History

Friday, December 31, 2004 9:35 PM CST

Hi Everybuddy!

Chris had an awesome day today. He actually awoke at about the same time as Dad; the two went downstairs to have breakfast with Grandpa. He ate a fairly decent breakfast of Cheerios.

Not too much later, Aunt Jackie and Cousin Ryan arrived. Chris has been waiting to see Ryan for a long time. Ryan was a bit peaked as he is a "roadie" for the band in which his brother plays. They had a very late gig last night (and Ryan normally sleeps in late anyway). He was here for Chris bright and early though, and either watched Chris play a video game or played against him one-on-one. Chris enjoyed himself and the company.

After a bit, Grandpa went out and came back with one of Chris' most talked about subjects in New York: Papa John's pizza. Even Dad had to admit that it tasted pretty good today. Chris was in seventh heaven and ate most of two slices of pizza (a lot for him recently) and savored every bite.

After lunch, Chris said that he wanted to "do something." So he, Mom, Aunt Jackie, Ryan and Dad went off to visit the Children's Museum of Portsmouth. Unfortunately, even though we checked its website before we went (which indicated that it was open regular business hours), we discovered that it closed early. So, we made a quick change of plans and headed for a big, nice mall located in downtown Norfolk. We basically investigated stores that Chris wanted to visit. He went to a game store, electronic game store, dollar store, and a bookstore. He was very judicious concerning what he bought, which included a new "chapter book" which he hopes he'll be able to read even when medicated. (He has other books that he could read normally, but it's too difficult when he's on some of his heavier medications.) He walked from one end of this large mall to the other almost twice, and was very tired afterwards. Aunt Jackie and Ryan could only guess how much of an effort it was for him, but Mom and Dad knew. Chris maneuvered Mom and Aunt Jackie into sharing a nostalgic moment: he got an Icee to drink, and it sounded so good that both of them did, too.

One interesting thing was that Chris had a late dose of Thalidomide this morning (he normally gets it at night because it is known to have sedative effects). Dad wondered whether the reduced dose would make him drowsy, but it didn't. Chris was alert throughout the entire day. This was important because it meant that Chris was able to function pretty much like a "normal kid" throughout the day. Despite that though, it's very clear that Chris is still not his normal "bouncy" self. He tries, but he walks very slowly and deliberately, and he tires much quicker than usual. Nonetheless, we think that the change of environment and carrying on with family members in a normal setting has helped.

From a medical perspective, Chris had a very nice day. He had a few cramps that he worked through without any medication, until bedtime when he asked for Benedryl. He received some medicine for what he calls "heart hurt" (which seems to be gas or heartburn), and a Zofran for some nausea. However, he managed to keep things in order. He was alert throughout the day but not the effervescent person that Aunt Jackie and Ryan are used to seeing. He ate moderately well, which is a little bit more than he has recently.

Chris spoke on the phone with our neighbors, who gave Chris a "Genie and Hooch" update. Later he talked very briefly with Uncle Ed and Aunt Debbie. He hasn't seen them in nearly three years. Admittedly, he didn't remember them until Dad reminded him about having worked on their boat one summer. He then remembered them quite well.

Joke of the day -- (from Uncle Tom -- for Aunt Jackie) -- What did the judge say to the dentist? Do you swear to pull the tooth, the whole tooth and nothing but the tooth?

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

We wish all of you a very happy, healthy and safe New Year!

Love,

Chris, Alison and Pat

Friday, December 31, 2004 0:08 AM CST, late posting for 12.30.2004

Hi Everybuddy!

Chris had a very long day since he had an early start at the clinic to ascertain how his blood counts and all were. Although for a little while, there was some concern as to whether Chris might wind up back inpatient again, everything checked out well enough to allow use to get a car and drove for almost eight hours (it took about 2 hours just to clear out of the city and its industrial surroundings in New Jersey) in order to visit grandparents in Norfolk, VA.

The good news was that Chris' white blood cell, ANC, and red blood cell levels were pretty close to normal, while the platelet level was 30. The latter was high enough to preclude needing a transfusion. The concern though was that at the clinic, Chris had difficulty staying awake (probably due to starting the Thalidomide). Because Chris had a similar problem not too long ago when his blood ammonia level was too high. If that concern were substantiated, Chris would most likely have wound up inpatient again. Although the ammonia level was above normal, the thought was that it might be improved by lowering the dose of the Thalidomide initially, then increasing it every three days. Chris was so tired, he went into the day bed area of the clinic while waiting for the blood test results to come back from the lab. In true reaction to the Thalidomide (just as he did before when he took this medication), Chris suddenly woke up right after gaining the bedspace. Go figure. Chris was then given the "thumbs up" for the trip.

The trip is an important step in reenergizing Chris' morale, in part simply because it gets him out of the City so that he can feel like he is not simply a medical pin cushion or robot. The drive itself actually went pretty well, especially once we got going on the New Jersey Turnpike. Chris spent most of the time either reading, playing a game, or watching a video on his new electronic "Juicebox." He was a "happy camper" and even his voice got stronger the further south we went.

Still very sleepy upon arrival (it was nearly midnight, so being sleepy was a normal reaction), Chris was immediately greeted by Grandma and Grandpa's dog, with whom he is still guarded. He's very sweet but he's big, and his tail alone could knock Chris down if he's not watching for it. Chris doesn't assert himself like he does with Genie. He went to bed quickly, with no protests even though he wanted to hangout with the grandparents for a bit.

From a medical perspective, Chris had another "sweet" day, although he is still taking in more fluids than he is eliminating again. His energy level was pretty low throughout the early morning, but picked up a little after about 10:30 a.m. There was no need for pain medication, no complaints about stomach cramps (although his tunny is getting bigger), and he ate a little bit more throughout the day. He was definitely very sleepy throughout most of the early part of his clinic visit.

Joke of the day -- (from Uncle Tom) -- Two atoms are walking down the street and they run in to each other. One says to the other, "Are you all right?" "No, I lost an electron!" "Are you sure?" "Yeah, I'm positive."

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, December 29, 2004 9:52 PM CST

Hi Everybuddy!

Today was a much more pleasant day than yesterday at the clinic since Chris really didn't have anything to do until his appointment with the psychiatrist. We visited the clinic
later than usual as we were unsure of whether or not blood needed to be drawn from Chris' mediport. It wasn't needed today, so the morning remained relatively quiet. Chris bumped into his old treatment pal, Michael, but the two boys were headed in two different directions.

Chris and Mom ended up visiting the "adult recreation area," where after passing the "age restriction test" (Chris is still a little young to go in there, but in light of his maturity level, he has permission to go there), he made a beautiful stained glass angel out of "sea glass" (it's actually trash from old bottles left behind at the beach but is polished by the ocean's waves and cleaned by staff before being used at the hospital). A volunteer there actually did most of the work, because Chris did not have a lot of energy. Still, Chris picked out the glass pieces by color (dark and light blue) and shape. The volunteer did a nice job of making Chris feel like he was part of the process of bending the metal around the glass and teaching Chris how to solder it all together. It looks very nice. Who knows: maybe he and Granddad (who used to do stained glass artwork) can work on such projects together in the future.

Meanwhile, Dad remained in the Pediatric Day Hospital (clinic) in order to coordinate some more medical things. We were able to talk with an oncologist before Mom and Chris headed upstairs. Dad expressed some concerns about the scanner used to scan Chris during the quarterly scans. Although the MIBG scanner did show new tumor development in Chris, neuroblastoma activity in the left lobe of Chris' liver is apparently masked by what is considered to be normal "uptake" of the MIBG isotope (this is sort of like not being able to hear a primary sound when it is being "drowned out" by a lot of background noise). We made some good observations that the oncologist said that he would investigate. The oncologists were to have their tumor board meeting this evening, so hopefully we'll have more information tomorrow.

Chris started taking Thalidomide again tonight in hopes that it will deprive his cancer cells of new sources of blood supply. Because this is a very tightly controlled drug (it's the same drug that was given to pregnant mothers in the 1950s and 1960s for nausea that caused terrible birth defects), Dad had to participate in yet another survey before the prescription could finally be written. Dad also followed up with our medical team in Florida and coordinated the transfer of more information concerning Chris' remaining frozen stem cells. We really do like our Florida hospital, which has always been responsive to situations such as we find ourselves now. Once that coordination was completed, Dad linked up with Chris and Mom, dropped off the prescription at the hospital's pharmacy on the way to the psychiatrist's office, which is located a few blocks away from the main hospital.

The visit with the psychiatrist went quite well; he did an excellent job of leading Chris through the session, yet making Chris feel like he is "the boss." He believes that Chris is suffering from what is called "major depression," but that it is probably of more recent origin (as opposed to a long term build up). He thinks that it is more than simple homesickness or something of that sort, but that it seems to be due to the seemingly never-ending stay here this time. Chris is tired of treatments, but we also discovered that Chris is still on board for trying to go for "the cure." Chris elected to have Mom and Dad remain in the consultation room, but we only spoke when additional information was needed. We think that Chris felt better after the session and is scheduled to meet again with the doctor on Tuesday.

Once again, Chris' liver issue is complicating matters because most medications that could help elevate Chris' mood could tax his liver, given the rest of Chris' circumstances. So, for the weekend anyway, we are supposed to continue to try to distract Chris from his worries to the extent that Chris can handle distraction. Chris' energy level needs to be considered as we continue doing what we have been doing: trying to get him out and about and/or thinking about other things. Doing more than Chris can handle can cause extra stress, and right now, Chris is especially sensitive. The doctor hopes to have a firmer plan in place by Tuesday, one that might include things like "talk therapy," art therapy and/or music therapy, in order to strengthen Chris' coping skills. He definitely got Chris' attention (in a positive way as only 10 - 11 year olds can truly appreciate) when he said that he wants to find a way for Chris to let off steam in "emotional farts."

Once we finished there, we stopped back by the hospital pharmacy to pick up the Thalidomide only to encounter a problem. The Thalidomide is very expensive, and the insurance company wanted only to pay for it from a Florida pharmacy. Mom went into action and had the pharmacy look toward our secondary insurance as back up. Pharmacy management determined that it should be added to Chris' hospital bill in order to avoid any delay in dispensing it. After a little wait while they worked the billing issue, we received the medication so that Chris could begin taking it tonight.

On the way back to the RMH, we called Chris' former teacher, in order to put in place the details for an early dinner with her. Chris' second wind had petered out early during dinner, and he was quiet throughout most of it. Still, he listened and kept up with the conversation even if he wasn't a big contributor to it.

From a medical perspective, Chris had another pretty good day, although his energy level was pretty low throughout the day. He endured two sessions of stomach cramps, only one of which required Benedryl to handle. He had no "ear problems" as he did yesterday, nor any vomiting. There was no need for pain medication. He is eating a tiny bit more now throughout the day, but not close to his "normal" levels. Ever so slightly though, his food intake is growing, and that's good news. Urine output remains relatively low, and his belly is beginning to "grow" again. At least it doesn't seem to be swelling as fast as it has previously. He has now gone an entire week without being hospitalized, and that, too, is good news. We are expecting an increase in sleepiness, particularly in the morning, now that he has begun taking Thalidomide. That drug has sedative effects, and it did make Chris sleepy the last time he was on it.

Chris received a couple of short calls. He spoke with his friend Greg, who asked Chris some questions from his new game, "The Worst Case Scenario." Chris knew the right answer to Greg's question about how best to eat a worm (boys!). He also briefly spoke with Grandma and Grandpa. He has received a number of emails and messages to his webpage, and we are very grateful for all of the encouragement, prayers and other support that you all are providing.

Joke of the day -- (from Uncle Tom) -- A neutron goes into a bar and asks the bartender, "How much for a beer?" The bartender replies, "For you, no charge."

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, December 28, 2004 9:36 PM CST

Hi Everybuddy!

It was a looonnngg day for Chris at the clinic, most of which he had to remain "NPO" (no food or drink). His 2 p.m. "tummy tap"
procedure was moved up to 1 p.m. due to what was thought to have been a cancellation, then moved back to about 2:30 p.m. because of a series of delays with other patients in the special procedures room. Whew! We also received the results of the four bone marrow biopsy sites: every one of them indicate the presence of neuroblastoma, although to varying degrees. Additional news was that Chris' bilirubin edged back up to 12.4. In other words, there was not a lot of good news.

There was some though. The "tummy tap" allowed for the drainage of another 1.6 liters of fluid from Chris' abdomen. That procedure was followed by an albumin transfusion, which in turn was followed by Latix. Together, those generated even more fluid loss and made Chris feel more comfortable afterwards. In addition, in consultation with the doctors, we have decided to restart Thalidomide again tomorrow in order to try to at least maintain status quo on the most recent spread of disease. The idea is to try to stabilize Chris' worsening condition in order to conduct a tougher battle against the disease in the near future. At first we were concerned that the Thalidomide might compromise entry into possible clinical trials (e.g., the neuroblastoma vaccine that is being created in Texas with Chris' own cells). Fortunately, we learned tonight that it won't jeopardize Chris' possible entry into the vaccine study.

Our ever vigilant oncologist in Tampa came up with some needed information concerning the quantity of Chris' stored stem cells. There are more such cells than we had realized, although these stem cells (harvested fairly early in Chris' treatment history) are contaminated with disease. Yet, the medical consensus is to have these stem cells available to "rescue" Chris' bone marrow, if necessary due to treatment, and battle the known now-frozen neuroblastoma cells that are mixed with the stem cells rather than lose completely against the extent of disease that Chris now has. These stem cells might be needed if Chris receives either the MIBG therapy (infusions of higher doses of the same radioactive material used to perform the scans with the intent of killing the cancer with it), which could occur at Childrens Hospital Of Philadelphia (CHOP) or what is known as "hot antibodies" (the same antibody treatment that Chris has previously received here at MSKCC, but loaded with radioactive material designed to "fry" the cancer cells where they are and stimulate the immune system.

Chris' situation is complicated, primarily by the still high bilirubin and the recovery of his liver, as well as by the timing of these clinical studies. Clinical trials, particularly at the Phase 1 level, are strictly controlled, with set "openings" and "closings" as well as certain general health requirements in order to be considered for entry. The doctors here believe that if Chris is going to have any chance at pulling through this, then we've got to get it right on the very next shot. Otherwise, the disease is likely to pull ahead of whatever reserve of strength Chris has left. So, the goal is to get Chris ready for the next available reasonably strong "punch" with which we can hit his disease. Part of getting Chris ready is trying to at least hold the spread of his disease in check until the first available good choice clinical trial becomes available (the ones that we are considering are each due to open within 2 - 4 weeks) and to still allow Chris' liver to heal and strengthen. Thalidomide seems to be the best possible drug for Chris at the moment because it usually has little or no reaction on liver function.

In other news, Chris was in better spirits today, although he was still tired and not his usually upbeat self. He spent most of this very long day in the clinic waiting area, either reading a Simpsons comic book or playing on his Nintendo DS. He bore the NPO (no eating or drinking) order very well. When he finally got out of the recovery room, Mom had some Wendy's chicken waiting for him (at his request); he did a fairly good job eating. (That's something we're really trying to encourage because, aside from the belly swelling, Chris is pretty skinny right now. He still has some "meat on his bones," but he really could stand to bulk up a bit more before his next tough battle.) After the procedure, Chris also developed a bad case of hives. He was fortunate enough to have several nurse practitioners and a very good nurse standing nearby. The nurse got the word to give Chris some Benedryl (they were thinking about giving it to him in pill form, but Chris was thinking about IV form). Despite not being hooked up to an IV, the nurse carefully injected the Benedryl, then carefully flushed it into him through his mediport. Thanks Sharon!

We left the clinic late this afternoon (about 5 p.m.), after Mom signed the informed consent paperwork to begin Thalidomide tomorrow. We walked right into a cold wind and snow flurries. It was cold! We stopped to buy some essentials at the drugstore along the way before proceeding straight back to the RMH. Chris spent some of his time playing a video game and with a small "Neopet" toy before he and Mom made a periscope from a kit for Dad. It works, too.

At dinner time, we decided to stay in since Chris had developed some head congestion that was affecting his ears (he was "hearing himself too loudly"). Dad went out for some pizza, and bumped into Chris' former teacher. We're going to get together soon for dinner. Chris ate fairly well although despite the head "congestion."

From a medical perspective, Chris had another pretty good day. There was no need for pain medication, nor any vomiting. Chris' bilirubin inched up again and, although no one was particularly happy about that, the thought still seems to be that he remains on a downward trend. We met the psychiatrist today, who introduced himself in the waiting room, but Chris' session isn't until tomorrow. Dad had dropped off some background information on Chris' treatment, his "Bio sheet," as well as some other information that we
hope might be useful so that he can make the most of tomorrow's appointment.

While in the waiting room, we received some neat telephone calls. The first call was from our next door neighbors, who reported that Genie is having a wonderful time with their son's dog, Hooch. Chris' friend Greg also called; they exchanged some "Santa information" and developed a strategy as to how to best investigate their new games and such. We also spoke with Cousin Lisa in Germany. It was so nice to hear from her, but unfortunately we had to cut her call shorter than we would have liked because of the arrival of a member of the medical team. Once back at our room at the RMH, we received a call from Grandma and Grandpa, as well as from Chris' oncologist in Florida, who had worked up the information needed concerning the status of Chris' stem cells.

We are very grateful for all of the words and prayers of encouragement that you all have been sending Chris' way. It means a great deal.

Joke of the day -- (thanks Uncle Tom) -- What makes the leaning Tower of Pisa lean? It doesn't eat much.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, December 27, 2004 9:51 PM CST

Hi Everybuddy!

Today was a long clinic day; Chris went in fairly early without having eaten or drank anything (NPO) just in case he was scheduled for a scan that we weren't told about (it's happened before). Dad asked around and wasn't told of anything so he eventually got Chris a doughnut. In accordance with Murphy's Law, Chris was soon called to the exam room. Although Chris had done a good job this weekend and wasn't too "off" on his inputs (what he drinks) and outputs (what he urinates or otherwise secretes), he still has some fluid that could be tapped from his abdomen. As luck would have it, there was a spot available. However, because Chris ate a quarter of his doughnut, he couldn't be scheduled for that available spot. He basically kept his waistline down and lost some weight. That was the word from his first examination. Chris' platelet level had dropped to 12 but the surgical team elected to wait until tomorrow before transfusing him.

Not too long after Chris' first examination by the surgical team, the neuroblastoma oncology team indicated that they'd like to see Chris, too. We waited a long time to be called in. Finally at about 1:45 p.m., we got Chris a peanut butter and jelly sandwich to eat (of course he needs nutrition, but he also has pills that need to be taken with food). He was able to eat 3/4 of the sandwich. While waiting, Chris also had the opportunity to have a one-on-one session with the visiting karate instructor, who taught him a new self-defense move. She told him that it was obvious that he had had a lot of martial arts experience and tried to reinforce that it was ok to "kick" or "punch" the bad feelings away. Chris' movements were weak compared to what he has done in the past, in part because he hasn't done them in a while and in part because his mood was son low. Nonetheless, he did it. When we finally got called in to see the doctor, we received some good news (his bilirubin has dropped to 11.4 and salt level appeared to be pretty good at 137) along with some bad news: Chris' cancer has spread into one area on each of his left and right legs. In addition, the preliminary indication from last week's bone marrow aspirate is that at least one of the sites from which they withdrew the marrow sample was "full" of neuroblastoma. This might explain why Chris has needed more transfusions lately than before the surgery and an additional theory for his fatigue.

Subsequent discussions focused on the very few options that might be available to him -- when his bilirubin drops to a lower level. Chris was understandably not enthralled by the news but he, Mom and Dad vowed later to keep on fighting. Chris' morale has been down for at least a month, and does not seem to be improving. In fact, he sobbed several times with Mom that he feels like he is in the dark, he feels lost and is only holding onto hope by a thread. He said that only recently has it really dawned on him that he's been in cancer treatment for more than 5 years and that he doesn't feel like he's getting anywhere. It keeps coming back. Chris also said that up until recently, he's always felt happy no matter what, but that he just feels empty and sad inside. Mom told him that it was ok for him to cry because he really has been through a lot, especially over the past couple of months. It doesn't help for him to be away from home, too. She asked him to pray about it and to hold on at least until Wednesday, when he'll meet with a psychiatrist to help him. She also promised Chris that even if he feels like he's in a dark tunnel, he only has to go around the bend in order to see some light again, and that we can hold his hand to help him get around the bend. Chris is actually looking forward to meeting the psychiatrist because he knows that this must be what depression feels like. Although Chris obviously did not want to hear that the cancer is back and is spreading again, it did not seem to be the primary source of his sadness. Those feelings preexisted this most recent news. When asked, Chris said that what he wants more than anything else right now is "a plan." He wants to be included in the discussions, but he wants someone to come up with a definitive plan to help him; he wants stability. We can say that it is very difficult to watch a child who has fought so hard for so long "slip away" to intense feelings of hopelessness, but we ourselves are hopeful that the psychiatrist may be able to help Chris with perhaps some medication but also with coping mechanisms.

Despite these very undesirable setbacks, we immediately began gathering information that we will need to go the next length. One thing that we're working on is determining how many stem cells Chris still has in storage. We know of one "bag" of frozen stem cells that are known to have neuroblastoma in with it (the neuroblastoma cells were harvested at the same time as the stem cells were). Even with that, the oncologist feels that it is probably a lesser threat to reintroduce neuroblastoma through the stem cells than it would be to exclude options that may require a stem cell rescue but may be capable of overcoming the reintroduced neuroblastoma. Reading between the lines, this means that it is better to try to take as hard of a punch at the neuroblastoma as Chris can tolerate now than to do nothing (or some option that is so gentle that it almost is "nothing"). The MSKCC oncologists are going to discuss the situation tomorrow, and we'll be getting with the oncologists in Florida, Philadelphia and Texas for their opinions as well. There may still be some additional scans necessary to accomplish what needs to be accomplished. Once again, time is of the essence.

After another memorable clinic day, we braved the cold and wind in order to head back to the RMH. It was mostly a game day back in the room, but for Mom who had some work to which she needed to attend. Chris played with his new EyeToy for his Playstation, which he received for Christmas. This particular one gives the sensation of riding on a hover skateboard. Chris, Dad and eventually Mom competed; we learned that some of the jumping required to make some of the moves was a bit much for Chris. He eventually settled down to a single player game.

At dinner time, we decided to eat at our favorite local Chinese restaurant. Chris ate fairly well although he did have a few sad moments. He is not happy about the setback, he's homesick and just "sad." On the way back to the RMH, Dad started everyone working on a new plan concerning New York City. Admittedly, we all want to go home; however we all have to accept that it might not happen for a bit. Instead we are now focusing on the good things that we can do while in New York. We have friends in and around the area and there are a lot of things in the area to do, many of which we have already done, but can do again. As we've been coming up to New York City over the course of five years, planning what to do that's new and exciting make take some effort and we journey out of the city. We really need to get a handle on Chris' morale; his positive attitude has carried him so far, but he can't see that right now.

From a medical perspective, Chris had another pretty good day: he did not need any pain medication, there was no vomiting and no use of Dilaudid. Chris' yellow look was misleading; his bilirubin has again declined. Despite the concern about input and outputs, Chris wasn't too out of balance in terms of his fluid levels. It is obvious that Chris' morale is sagging but we hope that his visit on Wednesday to the psychiatrist will be able to help him cope and maybe even lift his spirits again.

Joke of the day -- How do you fix a broken pizza? With tomato paste.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, December 26, 2004 9:34 PM CST

Hi Everybuddy!

We hung around our room throughout most of the day. It was cold and windy day, so any prolonged outings were put on hold. Despite the cold, there was a foray to church and then back to the room. Chris spent most of the day reading and watching television, rather than playing with his new things. Not too long after returning from church, we ventured out to the movies. Enroute to the theater, we stopped off at the nearby Burger King at Chris' request so that he could have some chicken strips. Although most of the walk there wasn't too bad, when we turned the corner onto 2nd Avenue, we got a face full of very cold wind. We were never so happy as to go into the Burger King just to get out of the wind.

The movie theater is only three businesses away, so it was a quick blast of cold when we were finished with lunch. Chris finally got to see the movie, "The Polar Express." All of us enjoyed this charming movie, which seems to have the makings of a new Christmas classic film. After the movie, we stopped off at the bookstore, where Chris spent some of his accrued allowance on purchasing some comedy and spy adventure books.

We came right back because of the cold. Chris does not deal as well with cold weather as he used to, so once we got back, he dove under the blankets, where he read and watched TV. We also received a couple of nice phone calls today from Grandma and Grandpa and from Aunt Jackie. In a way, it is just as well that we stayed in New York this weekend. The residents of Norfolk are now enjoying six inches of fresh snow that was unforecasted. So now, both sets of grandparents are residing in winter wonderlands.

Medically, Chris had a pretty good day and did not need any pain medication. There was no vomiting and no use of Dilaudid. Chris still looks more yellow than he has in a week and he tires very easily. Our chief concern remains Chris' fluid intake and outflow ratios; urination levels remain low. Another concern is Chris' sagging morale. He had a couple of very weepy periods today. One time occurred in church, so we remained there for an extra 10 - 15 minutes so that he could just unburden himself and cry it out. Then right before taking his shower tonight, Chris grew very weepy again. That time, he said that he wished that he'd just go ahead and die to get it over with. Mom asked him to explain, and Chris' real fear seems to be a combination of homesickness along with not understanding why his treatments never seem to end. With respect to the treatments, he was talking about it from two perspectives: 1) his current fatigue levels (it wasn't so long ago that he was running around at home, so it's frustrating to feel so weak all of the time), and 2) the length of time he has been fighting cancer. Mom talked to him a long time about how far he's come recently (he made it through a long weekend without having to go into the hospital) and over the years and reassured him that he will not be in New York forever. Chris asked the most sophisticated questions that he's ever posed to Mom about what exactly is neuroblastoma, why do some cancers kill and others seem to go on forever, and how do new treatments get developed. They even got into a discussion about what oncogenes are and how vaccines are developed (to the extent that Mom can explain them). In the end, Chris seemed to be much better and went to bed without any problems. He just seemed to need time to vent his fears and frustrations.

Joke of the day -- What fur do you get from a skunk? As fur as possible!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Our thoughts today go to Cousin Ned who has started his journey to join our forces in Afghanistan. We wish him and his soldiers the best of luck.

Love,

Chris, Alison and Pat

Saturday, December 25, 2004 10:12 PM CST

Hi Everybuddy!

It was a quiet but very nice Christmas for Chris. He actually awoke this morning at 3:00 a.m. and saw the outline of a bunch of presents under our "Christmas chair," but he acted liked he was averting his eyes until he fell asleep again. Thanks to the generosity of our families and some of the people of New York (and Santa, of course, with a little help from the Tooth Fairy -- more about that later), Chris had a very fulfilling Christmas. It was an amazing match between what Chris enjoys and what he received. The only wish that Chris didn't receive was to get home to Florida ASAP.

After falling back to sleep, Chris didn't awake again until midmorning, when he found Mom and Dad waiting on him. He was awed by the generosity shown him today: lots of video games and other electronic items (like a Juice Box), a board game and a cool SWAT team t-shirt from a real police force in Florida, etc. Chris also received a golden pocket watch from Santa that can hold a photo (like a locket) and was engraved with "Lucky Becker." That is the item which involved the help of the Tooth Fairy. Over the past weekend, another one of Chris' teeth fell out. Before he went to bed that night, he wasn't feeling very well and had taken some Dilaudid. Nonetheless, he wanted to write a note to the Tooth Fairy so that she could take it when she took his tooth. That note asked the Tooth Fairy to pass a message ASAP to Santa that what he wanted more than anything else was a pocket watch that could hold a photo (he liked the locket idea, but lockets are "girlie") and was engraved with "Lucky Becker" along with a smiley face. This was a tall order to be placed with Santa considering that there was less than a week until Christmas -- and Chris was hospitalized again. Nonetheless, somehow Santa found one at a shop in upstate New York. Once it heard about Chris' story, the shop shipped the watch overnight (without charging for the shipping) in order to try to allow time for local engraving since it couldn't get the engraving done before Christmas. The local engraving shop did the work that it could (it didn't have the capability of engraving parenthesis, so it couldn't do the smiley face) within hours, after hearing the story. Chris did not seem to notice that the smiley face was not there, but we hope to be able to add it in the near future. He did however have absolute faith that Santa would deliver this particular gift. As a result all of this, we now have confirmation that the Tooth Fairy does in fact have the capability of sending instant messages to Santa Claus.

It's funny how Chris sees so many "Santas" come visit the RMH and/or the hospital and understands that they are not the "real" Santa. But he has never (not even when drugged up on pain medication) indicated that there is no "real" Santa. He seems to inherently know that Santa is in the heart. The same seems to be true for the Tooth Fairy. In any event, Chris has more than enough games to last him through quite a long hospital stay, if that should be necessary (although obviously, we are hoping otherwise). Just when we thought that things were finished, Dad opened the door to put out the trash and found yet another bag of gifts for Chris hanging on the doorknob, complements of the RMH.

Chris was very happy to learn that Mom liked the ring that he gave her. It's an enormous (the equivalent of at least 6 or so carats) teardrop shaped cubic zirconia stone in a nice white gold-like setting. Although it's about 1/4 size too small and is a tight fit (Mom will see what can be done about that soon), it looks great. Mom told him that it made her feel like a movie star. She actually had escorted him to the hospital's gift shop a few days ago. Chris was upset that he didn't have anything for her and didn't have an opportunity to do anything about it. So, on the way back from a scan or something along those lines, Mom said that she'd go to the gift shop, then step back in order to let him shop privately. Chris had some money set aside for the project, so Mom only stepped forward to the cash register to ensure that the transaction was completed properly after Chris had the bag in his hand so that she didn't see it then.

Once all of the packages had been opened, we went downstairs to find a very nice hot breakfast buffet set up in the dining room. Thereafter, Chris went off to a later Mass than usual. He enjoyed it, although for a brief moment, Chris shed a tear because he was not home. That homesickness passed quickly and did not reappear for the rest of the day. Not long after his return to our RMH room and eating a few snacks so he could take his medicines, Uncle Brian arrived for a visit. The salt tablets are still tough on the tummy, so Chris sat quietly for a little bit in order to avoid vomiting. He was successful and even managed to get through some mid-strength stomach cramping and pain with only one dose of Benedryl. Within a half hour, all four of us went down to a beautiful Christmas dinner put on by the RMH staff. They have a wonderful set of volunteers, many of whom have served here for years. One volunteer sat down at our table to eat after having ensured that everyone else had been served, and we had a pleasant conversation with her.

During the dinner, some items were raffled off; Chris won a three foot tall gingerbread man. We couldn't imagine what to do with that much gingerbread and were trying to figure out what was the best way to use it. When asked, one of the volunteers mentioned that another little girl had been hoping to win one but didn't. With the help of the volunteer (the gingerbread man was heavy because it was so large), Chris took the gingerbread man over to the girl, much to her delight.

At the end of this wonderful dinner, Santa again arrived. This time he, with the help of Mrs. Claus and a couple of elves, presented gifts to the individual children who were expected to be staying here over Christmas which were donated anonymously by certain New Yorkers. Over a month ago, Dad had filled
out a form with the premonition that he and Chris would be here over Christmas. But in all of the turmoil since that time, Dad had pretty much forgotten all about it. The anonymous New Yorker assigned to Chris hadn't; he or she provided gifts that were tailored exactly for Chris to help keep him occupied.

After all of the festivities, we all headed back to our room, where we all shared a phone while Mom and Uncle Brian called in to their parents. Chris also played with his new video games and ate a small dinner of a slice of leftover pizza from yesterday's adventure to Pizza Hut (he intentionally did not eat much downstairs at the Christmas dinner because he wanted to save room for the Pizza Hut slice). It was the first slice in weeks that he ate completely to his usual standards. We also had the opportunity to speak with Grandma and Grandpa earlier in the evening. Uncle Brian stayed as late as he could (he even played a spy board game with us) before he had to head back to Staten Island. It's a long trip back and forth, and we really appreciate all of the time that he takes to spend with us here, especially over the holidays.

Chris had a small stretch of rough time tonight since all six of the dressings from his tummy taps and bone marrow sites had to be removed. Some of the stuck to his skin pretty tightly. Ouch! Other than that and the afternoon salt tablet incident which he was able to control, Chris had a pretty good day. There was no vomiting and no use of Dilaudid. Chris still looks more yellow than he has in a week and he tires easily. Interestingly, his belly looked fuller last night than it did this morning, but by bedtime again, it seemed to be fuller again. We did not take a measurement (perhaps we should have), but it seems to be about "half full" compared with when he was extremely bloated. At least his legs, ankles and feet seem to be in pretty good shape, with virtually no swelling and resolving rash. Our biggest concern currently remains Chris' fluid intake and outflow ratios. He did not urinate much at all today, and occasionally (as in about once a day for the past couple of days) Chris complains of burning sensations when he feels the urge but not much comes out.

Joke of the day -- What does Santa suffer from if he gets stuck in a chimney? Santa Claustrophobia.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Merry Christmas to all, and we especially think of our friends whose loved ones are not with them this year.

Love,

Chris, Alison and Pat

Friday, December 24, 2004 9:50 PM CST

Hi Everybuddy!

Chris had an exceptionally good day today, with only a few speed bumps. We thought about trying to visit grandparents in Virginia, but the timing just isn't right yet. Although we had received offers from our friend Barbara and her husband, as well and from Uncle Brian to lend their cars, Chris just isn't up for such a trip yet, even though he wanted to go. He seemed to be more yellow (jaundiced) today than he has in the past few days. Chris also tossed up part of his breakfast this morning and has generally felt fatigued throughout the day. All of those together, combined with his unstable medical condition since the surgery on November 8th to ensure a medically safe Christmas in the Big Apple this year.

After sleeping to midmorning and picking his way through breakfast, Chris rested in the RMH room while Mom and Dad tidied up the place a bit after arriving back here from the hospital yesterday. (Because we arrived in time for last night's RMH party, we pretty much just plopped stuff down in here last night, but we put things away this morning.) We then left for an adventure to visit Uncle Brian at his (new-to-us) home on Staten Island. We walked a couple of blocks then Chris helped to hail a cab to take us to his first granted wish of the day: lunch at the Outback Steakhouse. There is no Outback restaurant on Staten Island, so we went there first since Chris is trying to recapture his tastes from Florida; Outback is one of them.

Our trip to the Outback went well and were quickly seated. Chris was again treated royally by our server, who even made him a special cherry coke. He ate fairly well under his current conditions, but not as well as he usually does there. Since it was a cold and windy day, we opted to take a cab south to the Battery Park area and the Staten Island Ferry Terminal. The terminal building is currently being renovated but looks as though it will be very nice once it is finished. Chris grew very tired, having to climb a long flight of steps to the debarkation platform. As he rested while waiting for the next ferry, he was amused at watching about a dozen birds flying around inside the terminal building. Chris was able to sit for the entire ferry ride over to Staten Island and was able to see Ellis Island and the Statue of Liberty pass by. Once we disembarked from the ferry, we met Uncle Brian, who was waiting with his car at the bottom of the stairs (argh!), just outside the doors.

Chris has been homesick for foods from home. The Outback was a nice way to deal with that, but there were two things on Chris' mind lately: a Slurpee and pizza from either Papa John's or Pizza Hut. None of those appear to be available in Manhattan. Uncle Brian, who hasn't been on Staten Island for very long, was unclear as to whether any of them might be locally available. As luck would have it, we passed a 7/11 store enroute from the ferry terminal to where Uncle Brian lives and works. Needless to say, Uncle Brian made the stop for Chris, who truly relished his cola-flavored Slurpee. Then we looked diagonally across the street, and there was Pizza Hut. We came back there later for dinner.

Uncle Brian's school is on some of the most open and forested land on Staten Island (probably most of New York City). Chris thought it looked more like "home" than anywhere else he has seen in New York City. It was a nice looking school and so is Uncle Brian's apartment. After arriving at his home, Chris rested by laying on the bed and watching a movie while the adults talked.

Unfortunately, we didn't have time to stay there long since we knew that we had a long trek back to the RMH, and we don't want to wear Chris out. Uncle Brian helped mitigate some of the effort of getting back to the RMH by offering to drive us back to Manhattan. We took him up on his offer, which was greatly appreciated, but came with just a tiny bit of
difficulty since he hasn't driven on Manhattan too often, much less at night. (Dad doesn't care to do it either.) On the way back, we made one stop at that Pizza Hut, where Chris'
third wish of the day was granted. He ate fairly well (1 1/2 slices). We also did a fun thing while all of us were together on Uncle Brian's car, we called Grannylin and Granddad. We were thinking about calling Grandma and Grandpa, too, but Chris fell sound asleep. Thanks to Uncle Brian, Chris was able to sleep all the way back to the RMH. Thanks Uncle Brian!

Medically, Chris had a fairly good day, probably because we tried to match Chris' pace. He moves very slowly, and tires easily. But he didn't need any pain medicine until bedtime. His legs and ankles did not appear to be swollen today, and the new "rash" seemed to be stable in size and appearance (it didn't seem to be itchy today and the little blisters seemed to be drying up). This afternoon, Chris seemed to have lost his ability to burp, which was both funny and a concern at the same time. When he was still having some problems with it this evening, we gave him a "gas pill," which helped. The bigger concerns though were Chris' more yellowish appearance and the belly that appeared larger today than it did after yesterday's "tummy tap." We will be cautious with him throughout the weekend and hope that he can make it until Monday, which is his next outpatient appointment at the clinic. If so, then it will be the longest break he will have had since his surgery. One day at a time . . .

Joke of the day -- What happens to you at Christmas? Yule be happy!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds. We think especially of these families throughout this Christmas time.

Love,

Chris, Alison and Pat

Thursday, December 23, 2004 10:01 PM CST

Hi Everybuddy!

Chris has done it again: His bilirubin rose again to 16. Dad suggested that the bilirubin rise may related to when Chris receives red blood products, but the doctors aren't so convinced. The good news is that Chris has been discharged and the surgeon said that he didn't want to hear from Chris before Monday! Whether that happens or not depends on whether Chris can remain stable over the weekend, but nonetheless, this is good news.

It was another weird day for Chris in that he was NPO (no food or drink allowed) all morning, and he got called for his very long MIBG scan just as he finished a platelet transfusion and as his teacher walked in for class. She bade him farewell as Chris made his way to the scanner in the Nuclear Medicine Department.

The MIBG scan does not require Chris to be NPO. He was in that status because he also needed to undergo another "tummy tap" and the bone marrow aspirates. So that meant that he was hungry all during the scan. To add insult to injury, Chris has "grown" big enough so that the staff there had to add an additional twenty minute scan segment to his already long scan in order to make sure that his entire body is recorded in the scan. He wasn't happy about that but he did it. He said that he thought that being a "big boy" would be an advantage rather than a liability.

Chris arrived back in his room with just enough time for our fine nurse to hang a saline bag for Chris' next procedures: the "tummy tap" and aspirates. Today they drained over two liters of fluid from his belly, and then extracted bone marrow samples from four hip bone sites. Amazingly Chris doesn't even seem sore. Mom was waiting in the hallway outside the procedure room while this was taking place. At one point, she heard Chris howl in pain, but then no more sound. About ten minutes later, one of the doctors came out and reported that Chris was still undergoing the aspirates, but that the scream was not the result of actual pain. Chris remained completely knocked out throughout the procedure, but the scream occurred with the doctor was cleaning up excess Betadyne (a yellowish-brown antiseptic). It was strange, but when Dad heard about it later, he said that he remembered Chris doing something like that before. Chris had no memory of this incident at all, so nobody mentioned it to him.

Once back at his room again after those procedures, Mom went to get him lunch while Dad started packing up our stuff in the room; Chris was told that he could go "home" to the RMH. Unbeknownst to Chris, Dad had been speaking to the mom of one of his favorite older patient/friends; they finalized a link up with Chris at his room. Chris couldn't leave right away anyway because he still had to receive albumin and Lasix (which together pull fluid away from tissues and increase urination). Toward the end of the reaction time to the "Lasix period," Dad came up to the room with Kate and her family. Kate is about six years older than Chris but has always treated him almost like a peer or something of the like. He has always been very impressed by her, and we have been able to visit them on several occasions. They also have a son of whom Chris thinks very highly; he is also older than Chris but they share certain commonalties, including a love of video games. Chris had a great time and they restocked his depleted gag material (they really know Chris!). They were also kind enough to give Mom and Chris a ride home from the hospital as it was raining. They're a special family.

Once back at the RMH, we had barely time to unpack some of the stuff that got wet on the way back from the hospital (Dad walked all the stuff back on Ronald, Chris' stroller). There was an excellent event this evening sponsored by the Deutsche Bank. The Deutsche Bank has been a long-term supporter of the RMH; tonight it made available to every room in the RMH a Playstation, a Nintendo Game Cube, and a DVD player. It will also build a game and DVD library for the RMH. All of the children also received a gift bag from Santa. It also provided a wonderful dinner. Chris hit it off right away with the girlfriend of one of the bank employees; the two talked like old friends throughout the evening. Chris also saw another friend from a few years ago who was here for treatment for almost a year and a half. She is from the Tampa Bay area, too. All-in-all, he had a wonderful day (even while being in-patient).

Medically, Chris' girth had grown and his weight increased overnight, but we didn't really anticipate another 2+ liters coming out him again. His legs and ankles look much better although they are still a little swollen. This evening we noticed a new rash that is on both feet, is a little itchy and has a red streakiness about them. Mom thinks that it looks like a drug reaction. We've marked the boundaries with ink and will check it tomorrow morning to see whether it is spreading or not. There are no other obvious drug allergy symptoms at the moment (e.g., breathing problems), so we'll see how things are tomorrow morning. Chris was supposed to be seen by a renal expert but that person didn't visit Chris -- again (last night, the surgeon said that he had been consulting with the renal expert, but it was our impression that the specialist was supposed to visit Chris). Chris was very tired tonight, but had the typical Dilaudid reaction when it begins to wear off of talking a lot, feeling a bit insecure and making mountains out of molehills. Fortunately, that doesn't last for more than a couple of hours. It's too soon for us to be able to predict what's going on for Christmas since we have to see whether Chris can remain stable or not. We'll take tomorrow as it comes.

In other news, Mom briefly represented the Candlelighters Childhood Cancer Foundation on CBS' "The Early Show." A toy distribution company made a large donation of toys to Candlelighters, and because Mom was already in New York and familiar from personal experience with Candlelighters, she agreed to appear on camera to accept the donation. The original plan was for Mom to be able to explain a little something about Candlelighters and how families deal with childhood cancer in 30 - 60 seconds. However, her spot was cut short due to other issues related to live news reports. Still, she was able to receive toys that were donated to that organization. She held a sign with the Candlelighters webpage (www.candlelighters.org) and a personal message: "Merry Christmas Chris." Chris and Dad were able to watch it on live TV this morning. Mom's segment was filmed outside the CBS studios (at the southeast corner of Central Park). She found it interesting that although there is a small TelePrompTer connected to the camera, they still do things the old-fashioned way: cardboard posters with prompts for those on camera. (The prompts, by the way, are only hints, not word-for-word scripts.) So, that was an interesting glimpse at behind the scenes for live television.

Joke of the day (thanks Kathy) -- What kind of bed does a gingerbread man sleep on? A cookie sheet.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, December 22, 2004 9:05 PM CST

Hi Everybuddy!

Chris has done it again: he appears to be back on the road to recovery, although there are some troubling things still going on. His bilirubin dropped back down 12.5, but his hemoglobin fell from 12.0 to 8.1 for some unknown reason too. Therefore Chris received a red blood transfusion. He also still has diarrhea, but it seemed to be improving by this afternoon.

In a repeat of yesterday, Dad got him up early today so that Chris would be ready for his lessons today. Today's class was special in that his teacher was accompanied by her supervisor, who was doing some sort of assessment. Chris read and did math. After a bit, the supervisor departed and the teacher seemed rather satisfied with class period.

After class, Chris really didn't have much to do today other than get an MIBG injection for tomorrow's MIBG scan. In true hospital style, the patient escort arrived to take Chris to Nuclear Medicine for the injection only minutes after Chris' lunch arrived. Chris was not happy about going down to that department, not because he minds the injection or the people who work there (let there be no doubt: Chris is well known and well loved there, where he is warmly greeted by everyone who works there immediately upon arrival), but because he is dreading having to lie still for a long time during tomorrow's scan.

He was supposed to be seen by a renal expert but that person didn't show. The surgeon came by late this evening to check up on Chris. He still thinks that although Chris has had a rough time of things, that Chris is well on the road to recovery. In fact, if all goes well tomorrow, Chris may be released after all of tomorrow's procedures. Chris is scheduled for a MIBG scan, bone marrow aspirates, and possibly another "tummy tap."

Chris' belly is growing again, but at least it is smaller than it was two days ago, and his ankles appear almost normal. He was walking fairly normally today, and although he had his moments, Chris was also generally feeling better too.

Chris' most recent roommate was an adult. He and Chris have seen each other on and off for years but it has only been lately that they've been "roomies." They complement each other well while roommates. Sadly, he has been transferred to another ward this evening and we'll miss him. Chris' new roommate has just arrived: a 5 year old with whom Chris has shared a room only about a month ago.

Chris' appetite is still a little bit off but he did a pretty fair breakfast of bacon and Cheerios. Chris almost lost his breakfast but Dad had him do some breathing exercises while Dad got him a Zofran and after five minutes, Chris was able to continue eating.

Chris had some social activity today, too. He was visited by Father Steve, who tried to persuade a nurse to bring Chris a Slurpee tomorrow. Chris has never been a huge Slurpee fan, but they were easy to come by in Florida. Here in New York, they apparently are not available on every street corner like they are down south. The nurse lives in Queens, so Father Steve "egged" her on to go look and see whether Slurpees might be available over there. Chris and Father Steve seem to get along pretty well. Aside from receiving Communion, Chris also had Confession. Mom stepped out of the room for a while. When she returned, she learned that the two of them had a pretty sophisticated conversation based on a question that Chris had regarding the comparison of a certain Old Testament story to a counterpart in the New Testament. Chris also received a phone call from his beloved former New York teacher, from Grandma and Grandpa, and his friend Greg. It sounded like Greg and his brother played Christmas carols over the phone (Tommy plays trumpet and Greg plays trombone). Grannylin and Granddad tried to call several times today, but either got busy signals or Chris was out of the room. Chris played "phone tag" with them; maybe tomorrow will be better in that regard.

Medically, it was a pretty good day. Chris seemed more upbeat (although still a tiny bit moody). His color is also looking much better. The oncologist is gathering consensus as to whether or not Chris could begin taking the chemo drugs Thalidomide and Temodar in the next day or two. The drop in hemoglobin was unexpected and as of yet, unexplained. Chris is tired of all of the diarrhea but they won't let him have any Immodium until some test results come back.

In other news, Mom will be acting as a substitute representative of Candlelighters Childhood Cancer Foundation tomorrow morning. At some point during the 8 a.m. hour, she will briefly appear on CBS' "The Early Show" in order to receive toys that are being donated to that organization, which is a "national non-profit membership organization whose mission is to educate, support, serve, and advocate for families of children with cancer, survivors of childhood cancer, and the professionals who care for them." Mom happens to be in New York at the moment and is obviously familiar with what it is like to deal with childhood cancer. It is expected to be a very brief appearance, but she hopes that a tiny bit of the "in-the-trenches" experience of dealing with childhood cancer can shared with the general public. The segment may also wind up on CBS's webpage tomorrow.

Joke of the day (thanks Uncle Tom) -- Early one morning, a mother went in to wake up her son. "Wake up, son. It's time to go to school!" "But why, Mom? I don't want to go." "Give me two reasons why you don't want to go." "Well, the kids hate me for one, and the teachers hate me, too!" "Oh, that's no reason not to go to school. Come on now and get ready." "Give me two reasons why I should go to school." "Well, for one, you're 42 years old. And for another, you're the Principal!"

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, December 21, 2004 8:55 PM CST

Hi Everybuddy!

Chris' unpredictability is becoming legendary. His bilirubin rose today to 17, thus breaking his downward trend. Dad woke him up early this morning since Chris was scheduled for a 7:30 a.m. "tummy tap" procedure, which drained another 1.8 liters (the equivalent of most of a 2 liter bottle of soda). Chris visibly appears to be "thinner," both in the abdomen and around his ankles, although he still is "larger" than before the surgery.

As a result of receiving more albumin and Lasix, Chris urinated quite a bit more today. Chris and Dad battled this urge to urinate throughout the wee hours of the morning; the urge comes on so swiftly that Chris had two "accidents" even though Dad was awake especially to try to ensure that it wouldn't happen. To the extent that we have any control over the situation, we don't want the Lasix at night again. It's too hard to deal with it and it disrupts Chris' regular sleep cycle. Chris also received albumin and Lasix during the day but Chris and Mom were better able to handle the onslaught then.

A new problem that has developed has been diarrhea. Initially there had been some confusion about whether it could have been a drug reaction, but ultimately it was determined that it probably was not caused by medications. Finally, at the end of the day, someone requested a stool sample for analysis, which Chris dutifully provided. Determining the cause is important because if it's an infection like "C. diff.," Chris could wind up being here at least another 3 days.

Chris was more comfortable today, and only received Benedryl for the cramping that started whenever he ate. He threw up at breakfast almost immediately after taking the first salt tablet, but he did not appear to lose any of his other medications (which had been taken a little earlier). However, Chris was a little disoriented late this morning, after he woke up for the second time (post "tummy tap" procedure, during which he received anesthesia). He asked several times what happened and what time was it and what was going to happen next. Chris' blood ammonia level was much closer to the high end of the normal range, so it was thought that his short term disorientation was related more to the sleep disturbances and the early morning anesthesia. He took a 1 1/2 hour nap after lunch and seemed to be ok afterwards. Chris is still not his usual cheerful self yet, but he was at least reasonably comfortable today.

Even though we helped decorate for the Christmas party held in the playroom, Chris was unable to attend since he is inpatient. Some of the Christmas merriment did move to the inpatient side of the hospital. About a dozen "elves" preceded Santa by singing Christmas carols. Santa came along, too, handing out backpacks full of stuff. Right about that time, Father Steve came by to visit Chris, who was not in a particularly cheery mood at that time. Father Steve got a smile out of Chris by checking him out for "hives" with Chris' "hive-checker" (a make up compact mirror that Chris uses during transfusions and antibody treatments to see whether itchy places are really hives or not). Chris' hive-checker happened to be sitting out on his table and Father Steve used it to try to draw Chris out of his shell. It worked, and with good timing, too since the elves were arriving.

Joke of the day -- Why should you never tell a joke to ice? Because it will crack up.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, December 21, 2004 0:01 AM CST (for 12.20.2004)

Hi Everybuddy!

Chris kept up his unpredictable trend today. He awoke around 7:30 a.m. in order to have plenty of time for breakfast and to finish about 5 homework questions before heading off to the clinic for the usual blood tests and to see what else was needed. However, Chris really didn't feel good; although he tried to make do, he simply could not eat breakfast nor could he urinate. The net result was a very uncomfortable boy. His tummy measured as large as it ever has, with a waistline measurement of about 82 cm (32.3 inches) -- very large for a 10 year old boy. His poor skin appears to be stretched impossibly tight, and his ankles are still very swollen.

Chris wound up throwing up the couple of bites of breakfast that managed to go into his mouth. For the same reason, he was not able to hold down his medicines. However, by the time he arrived and settled in at the clinic, Chris was able to eat part of a doughnut, which was enough to allow him to get his morning medicines down, too.

Nonetheless, he was not feeling well, and was quite drowsy. He continued to have difficulty raising his legs in motions needed to climb into a chair or bed, or to climb up stairs. All of the above, combined with the couple of fevers that Chris had experienced over the weekend and the unusual sound that the nurse practitioner heard through her stethoscope earned Chris some extra tests and ultimately another inpatient stay.

The first new order of business after the many blood test tubes were filled (no wonder why he needed both red blood and platelets today!) were a couple of chest x-rays. There is some concern about Chris' lower right lung, which indicates some sort of a problem but has not yet been determined to be either early pneumonia or related to Chris' huge belly or even some other kind of problem related to Chris perhaps breathing too shallowly. The medical folks are keeping an eye on that, given the couple of recent fevers. So far, he has not received any particular treatment for that yet, but we'll see.

Afterwards, Chris was thoroughly examined by a neurology fellow (a couple of hours later, the pediatric neurologist herself came to see Chris, too). The idea was to try to get a better view of what's going on with Chris' legs. Chris' situation is rather complex right now, and we don't know whether there is something truly neurological going on, or whether the mere weight that Chris has to carry around is the cause. Both neurologists noted some weakness in his legs, but as of now, the cause is uncertain. They will keep checking Chris' potassium levels because apparently low potassium levels can cause similar effects. The leading theory was that Chris' swelling may be pressing on nerves that run down the length of his legs. They ordered a MRI for a better view of Chris' pelvic area. That scan was performed this evening; Chris was called away for that only minutes after his dinner tray arrived, so there went that opportunity for him to try to eat.

Although he fully cooperated, Chris was in no mood for the neurological workup. He was drowsy and somewhat irritable, and mistook the simple questions that the fellow asked (in order to check for signs of Chris' mental clarity) as insults to his intelligence. He did everything that was asked of him though, and he did not complain directly to them (the complaints were whispered to Mom while they wrote their notes).

Eventually, Chris moved into the Pediatric Day Hospital's (PDH or "clinic") outpatient bed area during the mid-afternoon. He needed platelets, red blood, albumin and lasix. That was way too much stuff to be transfused/infused during the three more hours that the outpatient clinic was due to remain open. The decision was made to place Chris inpatient once again in order to allow for the completion of all of those requirements, but also to allow for the following: scheduling of the MRI, scheduling of the next "tummy tap" (to take place at about 7:30 a.m. tomorrow morning) and bone marrow aspirates, and to have Chris available for neurological and/or renal follow up. As it turned out later, the renal expert will not be able to see Chris before Wednesday, and the bone marrow aspirates cannot be done tomorrow at the same time as the "tummy tap" because of previously scheduled procedures for other people, so the aspirates will likely take place on Thursday. There may be other tests scheduled as well since it's time again for Chris' quarterly scans and we're looking ahead to an anticipated day when we can start going on the offensive against the cancer again.

Another factor that's being monitored is Chris' high ammonia level in his blood. It measured at 73, and although we don't have the exact normal range for that figure, we think that it should be at or under 45. Chris' number is high enough to attract medical attention and it could be the culprit for his drowsiness. Apparently it's related to the fluid retention and his inability to urinate properly. He tries, but very little comes out, and what does is very dark in color.

A couple of days ago, the surgeon mentioned the terms "ascites" and "cholestasis" as descriptions of Chris' currently predominant problems. Ascites is basically the abnormal accumulation of fluid in the abdomen. One cause can be low levels of albumin (which Chris has) can cause improper fluid exchange through the tissue membranes. Cholestasis refers to reduction or blockage of proper bile flow through the intestines. That can be caused by several different factors, some within the liver and some without. In any event, Chris has a situation that cannot remain in its current status quo forever because it's putting quite a strain on his body, so every day we hope to see some improvement. The only improvement that we noticed today was that the 9 salt tablets per day seemed to have done the trick for Chris since his sodium level remained stable at 135 today.

The bottom line is that we still don't know what exactly is going on inside Chris, but the effort to learn seems to have been redoubled. Let's see what we learn tomorrow.

In other news though, there were some bright spots. Mom took some time to shop at a particular store located about 1 1/2 or so away. Ordinarily she would have walked that distance, but it was bitterly cold outside so she took a taxi there and another one back. The driver on the return trip dropped her off at the hospital, then refused to take either the fare or the tip; he merely said that he wasn't going to charge anybody a fare for going to the hospital during Christmas week. Although that was incredibly generous of that man, Mom hopes that she is his only fare who needs a ride to a hospital this week; that sounds like a surefire way to make sure that he doesn't get paid this week. Besides, here's hoping that as many patients as possible can be discharged to go home in time for Christmas!

Also, our friend, Jen, was still able to come over and visit with us this evening. We had planned to celebrate her MBA graduation with dinner out tonight, but she came to us at the hospital tonight instead. Chris adores her, but he simply could not stay awake and thus missed most of her visit. That's ok though since Mom and Dad were able to "catch up" with her. Chris will just have to catch up with her at a later date.

Joke of the day -- Why should you never tell a clock a secret? Because time will tell.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, December 19, 2004 8:43 PM CST

Hi Everybuddy!

Today was not quite the day for Chris as was yesterday, but he did enjoy going over to his friend Simon's house and having a very good time, at least until medical issues reared their ugly heads. As a matter of fact, we are on fever watch again.

Chris' day started out much like usual but for eating a little less during breakfast; he only had some buttered Italian bread and half of a slice of ham. Soon afterwards, we were
picked up by Simon's dad, who took us on a neat scenic tour of Brooklyn. Chris liked the feel of that place better than Manhattan because it's "home-ier." Once at Simon's house, Chris took a little time to recover from the drive (he fell asleep en route), and then Chris and Simon went down to Simon's "fun house" in their lower floor and had a great time (we could tell by the sound of their laughter). After an hour and a half, the boys came back upstairs and rejoined the party. A little later, everyone sat down to a wonderful Christmas dinner, during which Chris' medical status started to slide a bit. Simon's mom was really nice and made Chris a peanut butter sandwich despite a meal loaded with some favorite food items.

Chris sort of faded out and then started to experience some chest pain (probably due to gas). He was also battling pain while he walked due to his swollen feet as well as a bout of abdominal pain. Additionally, Chris noticed that another tooth suddenly became very loose (it eventually came out at the RMH). Simon's family was very flexible with all of this (Simon and Chris went through some of the same treatments together a few years ago). Simon's dad took Chris home after he felt a little better. The bottom line was that we had a great time sharing Christmas with Simon's family and Chris was disappointed that his "medical issues" interfered with the day a bit.

Once back at the RMH, Chris took a break and settled in under some Army blankets. He started to feel better after about an hour or so. Dad went on a quest to find a new print cartridge shortly before the second part of Chris' "Fun Sunday" began. When Uncle Brian arrived, Chris was still feeling a bit down. Soon after Dad got back, Chris also said that he felt "hot." Sure enough, Chris had a fever above the threshold and Dad ended up speaking with the surgeon again. Although they discussed the possibility of bringing Chris back to the Urgent Care Clinic, the end result was that Chris would receive some Tylenol and then keep checking Chris' temperature throughout the evening. Shortly after getting the Tylenol, Mom and Uncle Brian came back from getting some pizza and Italian bread. Eventually Uncle Brian was able to comment on how much more lively Chris seemed. After dinner and Uncle Brian's departure, Chris and Mom even went down to the kitchen to retrieve "Chris' Flavor Boosters" (small cups of frozen Mountain Dew, Koolaid, and Diet Coke which are added to drinks as if they were plain ice cubes). Chris basically thought that today was another super day and capped off a great weekend, even if he did get tired.

Medically, Chris got by with one dose of Dilaudid for that pesky low abdominal pain. Chris' energy and pain came and went again throughout the day; he and Simon had a really great time before Chris' medical (and dental) issues sprang up. Between visiting with Greg and Simon and Uncle Brian's visit, it has been one great weekend. Chris clearly enjoyed his day. One thing that's sort of weird is that Chris sometimes cannot move his legs as well as he usually can and may need some help positioning them. This isn't always the case but it has happened a few times during the last week. It appears to be related to the swelling.

Joke of the day -- Where do Santa's reindeers like to stop for lunch? Deery Queen.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, December 18, 2004 9:10 PM CST

Hi Everybuddy!

Today was what Chris has described as his best New York day ever. This was because that he received a big package in the lobby this morning. In it was his friend, Greg, who along with his mom, came all the way up here to New York from Florida to visit Chris. The look on Chris' face was priceless! Chris was called to the lobby to receive the large package, which was "placed" next to the Christmas tree. Chris and Dad went over to investigate and unwrap, while Mom stood back slightly in order to try to photographically capture the event (we'll try to have the pictures on the webpage soon). Both of the boys were so happy to see each other!

Shortly after the "unwrapping," Chris took Greg on a kid's tour of the Ronald McDonald House, which meant that they headed directly to the playroom of course. Chris, being the "celebrity" that he is here, was allowed to enter the playroom before it opened this morning so that he and Greg could play while it was being cleaned. Predictably, they played a Playstation 2 game for while, until Chris began to feel fairly intense stomach cramping. Chris wasn't able to concentrate on playing anything for a while until a little bit after he was able to take a dose of Dilaudid. Greg did a wonderful job of waiting for Chris to feel better.

Not long after the excursion to the playroom, we all wrapped ourselves up to brave the cold but clear weather and headed off to see the new movie, "A Series of Unfortunate Events." Getting right into the New York swing of things, Greg hailed a cab. The movie was a broad adaptation of the first three books in the series, which Chris really enjoys reading. Despite straying from the books on occasion, it was a very entertaining movie; we all enjoyed the film even if not all of us had read the books.

After the movie, all five of us walked four blocks to an electronic game store (this is quite an accomplishment for a boy with very swollen feet and ankles, but this was his idea). After shopping there for a bit, we continued the walkabout for another four blocks to Mom's favorite barbecue place, we enjoyed a great lunch. While at the restaurant, Chris and Greg planned a spy mission to be executed at the RMH. The planning paper was not for adult eyes though; any time a parent eye even accidentally glanced in the direction of the planning document, the boys diverted our attention elsewhere. After lunch, Chris and company walked yet another three blocks to a store near the RMH, where Chris and Greg shopped for a bit. By then though, Chris was in need of a rest and a pain killer, so he really wanted to get back to the RMH.

Upon our return to the RMH, the two boys began their mission preparation for their spy mission by packing up the gear that they thought they might need (video games, snacks, walkie talkies, etc.), but then at the last moment decided to walk off and leave most of their equipment behind. Whatever works! After the mission, the boys rejoined the adults and hung out in the room. Chris sort of faded out toward the end of Greg's visit. But he clearly enjoyed his day today, and even declared it to be his best day in New York ever.

After Greg and his mom left, Chris got a little more rest, his energy level picked up again. He made a bracelet for Mom that changes color in the sunlight (a science teacher sent him the experiment). It really does work, too. Chris and Mom also went down to the kitchen to retrieve Chris' first ever "Chris' Christmas Xmas Extra Surprise" (a small cup of frozen cherry Koolaid) from the freezer. Later in the evening, Chris dined on some pizza and buttered Italian bread. Also this evening, Chris said hello to several members of his extended family who live in Kentucky, who were together today.

Medically, Chris got by with two doses of Dilaudid for that very low abdominal pain which he says feels like a "hot knife" and "knows" that there is something "real" down there. Chris' energy and pain came and went throughout the day (as did his moodiness, which Chris clearly tried to control during his friend's visit), but Greg was very sensitive to Chris' ability to have fun. Chris is still having some difficulty in urinating out enough fluid to match what he is taking in by drinking. His belly, legs, ankles and feet are still very swollen, and as a result he has trouble bending down, climbing stairs and some walking. Despite some moodiness and fatigue, he clearly enjoyed his day.

Joke of the day -- Why was Santa's little helper depressed? - because he had low elf esteem.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, December 17, 2004 10:14 PM CST

Hi Everybuddy!

Chris had a very long day as he headed into the clinic early for two reasons. The first was that he was in some real pain and the oral Dilaudid wasn't cutting the pain, and the second reason was to be in position for today's "draining" procedure. As soon as the guys arrived at the clinic, the staff could tell something was wrong so they put Chris in an outpatient room. Soon afterward, he received some IV Dilaudid which finally cut the edge on the pain.

Chris became so normal that shortly afterward, his teacher came by and they were able to have some uninterrupted class time. She came out periodically to speak with Dad as Chris needed something to moisten his tongue as he was NPO for today's procedure. Chris spent most of the morning comfortably relaxing while waiting to be called forward to the procedure room for the "tummy tap." This was done a little earlier than expected; Chris went in at about 11:30 a.m. The procedure drained about 1.2 liters from his abdominal area. He now is sporting a pressure dressing at the site. His belly is still much larger than it usually is, but at the same time appears to be a little smaller than it was before the procedure.

One thing to remember is that not all of the fluid is just sitting in his abdominal cavity "loosely," so to speak. A fair amount of it has been absorbed into Chris' tissues, which have swollen as a result. That's why his belly has not flattened out and also why his legs and feet look like overstuffed sausages (Chris' feet and ankles are so swollen that he cannot comfortably wear his regular shoes, and is temporarily wearing another pair of sneakers that are a bit bigger than the regular pair). So, the "tummy taps" relieve some pressure, but they cannot release all of the accumulated fluid. Another thing to remember is that Chris has not been urinating very much. As a result, there is more fluid in his body than there should be if he were excreting it normally. The "tummy tap" competes with the urinary system as a means of disposing of this excess fluid, but the ideal way to get rid of it is through urination since that's the way the body is designed to operate. So, Chris' abdomen gets "tapped" as needed, but the surgeon does not like the idea of leaving a drain in for any extensive amount of time so that Chris' body can get used to operating the way it's supposed to.

After the procedure, the surgeon came out to speak with Mom and Dad; he reported what he did and that a sample of the fluid would be sent to the lab. He also discussed getting some appointments set up for other general medical support in order to broaden the expertise working on identifying Chris troubling post-surgical problem. He also mentioned that the most current CT scan showed several active cancer nodules that have grown in the left lobe of the liver. Of course there is nothing that we can do about that at the moment until after Chris recovers better than he has so far.

In spite of his complications, Chris seems to be on the road to recovery. It has definitely been slower and more difficult than expected. On the other hand, Chris has been exposed to a great deal of previous heavy duty treatment for his cancer over the years. For example, one adverse effect of all of the transfusions has been an accumulation of iron deposits on Chris' liver. Over time, as those build up, they can weaken and damage a liver. Chris has rarely been a "textbook" patient (which is why he doesn't generally follow treatment protocols exactly), but it is possible that his slow and laborious recovery might be, at least in part, due to some of his previous treatment.

During and after today's procedure, Chris received two doses of albumen, which was followed by a dose of Lasix. Unlike yesterday, this process didn't produce the output of urine that yesterday's effort developed. We are hoping that's because the "tummy tap" drained some of that fluid away, rather than the possibility of other problems developing, but we'll just have to see what happens next. Chris couldn't leave right away, but instead had to wait around until the results of another sampling of blood tests came back. His bilirubin is still slowly declining and is now 12.7 (normal is: 0 - 1.0 mg/dl). Chris' sodium level had somehow managed to dropped to 129 (normal is: 136-144 mEq/L). After the procedure, Chris' waistline was measured again; it "shrunk" down to 76.0 cm (29.92 inches) and his weight is now 34.6 kg (76.28 lbs.), which is still suspected to be higher than his generally skinnier appearance would indicated but less than yesterday due to draining some of the abdominal fluid. Basically, he lost at least 3 lbs. and 1.5 inches due to the fluid removed as a result of today's procedure.

Chris was finally released at around 3 p.m., and we to Chris' new favorite Italian restaurant for his first real meal of the day (he had tried to eat some snacks while waiting to be released, but lost some of them a half hour later). He ate, but with a suppressed appetite. At Chris' request, we then shopped for a few foodstuffs before heading back to the room. All went well until Mom and Chris went down to yet another Christmas party. As it began, Chris developed midlevel intensity lower abdominal cramps. After taking a Benedryl, Chris and Mom returned to the party. Shortly afterwards, Chris needed some more pain medicine (unfortunately while on the phone with Greg). He received another dose of Dilaudid, and at Chris' request, Mom checked for a fever. He had one (generally at about 100.5 F), so we're now on fever watch. When called tonight, the surgeon said that Chris could take some Tylenol for that (Chris usually cannot take Tylenol for fever without checking in with the medical staff first, just to be sure that it doesn't mask the effects of a more serious condition). For now, it seems to be doing the trick.

Medically, Chris again needed two doses of Dilaudid for that very low abdominal pain which he says feels like a "hot knife" that is still there despite the effort to drain more fluid today. Chris is a bit disappointed that his belly didn't get much smaller than it did today. For a kid his size, a 76.0 cm waist is still quite large. Because of the Dilaudid, Chris also had his share of anxious moments today. Typically, he becomes agitated over what would normally be a small issue, then he follows that with profuse apologies and "I love you's." It can sometimes be difficult to get him to focus in order to show that whatever is bothering him at the moment is a "molehill" rather than a "mountain." It also makes him feel somewhat drowsy, but he often fights off the urge to nap, which doesn't give him the rest he needs. Nonetheless, way down underneath all of that lies a heart of gold. He still tries to do the right thing, even if it's difficult for him to focus on it. Chris (ok, Mom and Dad, too) is looking forward to what we hope will be a very enjoyable weekend. He doesn't know it yet, but Mom and Dad are aware of what should be a very big surprise for him tomorrow morning. We hope that he sleeps well and feels good in order to enjoy what should be the "biggest" surprise he's ever had -- one which should raise his spirits a bit. Stay tuned tomorrow for details.

Joke of the day -- Which of Santa's reindeers needs to mind his manners the most? Rude-olph.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, December 16, 2004 9:33 PM CST

Hi Everybuddy!

Today had a hectic beginning in that Chris still had a little homework to do and right at the end of breakfast, he had some super abdominal cramps that Dilaudid wasn't doing too much to remedy. We made a hasty departure and headed for the clinic. As is oft the case, as soon as we got there, his pain became more manageable and the "emergency" turned into a more routine event. Chris and Mom were actually able to finish Chris' homework before the teacher arrived. During this class, Mom actually stayed in the classroom while the teacher attempted to conduct class, but there were numerous interruptions -- then and later when she returned to try it again at Chris' bedside.

We are glad that part of the discharge arrangement were daily blood tests and exams. Not only is Chris' abdomen growing daily, now even his legs and ankles are swollen. Chris' platelets also dropped to 9, which guaranteed a platelet transfusion today, and his hemoglobin is hanging right above the transfusion point for red blood. His bilirubin is still slowly declining and is now 14.2 (normal is: 0 - 1.0 mg/dl). Chris' sodium level had somehow managed to dropped to 127 (normal is: 136-144 mEq/L). His waistline is now up to 79.5 cm and his weight is now 36.0 kg, due to fluid retention. All of this all earned him a bed in the outpatient clinic, a visit from the surgeon, a platelet transfusion, an infusion of albumin (which makes the body consolidate fluid for ultimate discharge), followed by a dose of lasix (which induces urination -- which Chris did). It also earned Chris a trip to the procedure room tomorrow, where again his tummy will be tapped in order to drain his abdominal fluid buildup. At the moment, there is no intent to replace a drain again, but we'll see what happens tomorrow. After all of the infusions, Chris' blood was retested to ensure that his sodium was at an appropriate level (it is although still below normal at 131).

Chris had a platelet transfusion without incident (well, related to the actual transfusion) but he did get a bad case of cramps that we handled readily. All of this medical activity has Chris moody, emotional, and edgy for much of the day. He was very specific during his discussion with the surgeon about what and where his pain was, his concerns, and what anesthesia he expected to get tomorrow. The surgeon commented that Chris was "a man who knows what he wants."

Medically, Chris again needed two doses of Dilaudid for that very low abdominal pain which he says feels like a "hot knife." The surgical team thinks that it is not specific to anything in particular but is probably due to retaining too much fluid. Although the medical staff didn't set any criteria for how big that they'll allow the measurements to climb, whatever they thought after today's exam was enough to trigger them to schedule the procedure during which they will again drain his abdominal area. Dad seems to be the only person who can smell a peculiar odor about Chris; Mom every once in a while catches a whiff of it, but it's not enough for her to put her nose on it, so to speak. Chris is looking forward to getting "smaller" again after tomorrow's "tummy tap." His belly is so enormous that Mom and Dad both marvel at how well he can function at all, even if he is somewhat on edge.

Joke of the day -- What do you get if you eat Christmas decorations? Tinsilitis.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, December 15, 2004 10:06 PM CST

Hi Everybuddy!

It was nice to return to the RMH as there is certainly more freedom, but it does have its drawbacks. After a nice dinner at Chris' new "favorite Italian restaurant," the guys got back to the RMH just in time to hear an all male acapella singing group. Unfortunately, although they were quite good, Chris kept dropping off to sleep. The guys left the concert and went up to get Chris cleaned up and to redo his mediport dressing. Chris was so tired that he kept nodding off during his phone call to Mom.

All went well until 2:30 a.m.; that's when Dad awoke because Chris squawked out "Help" from the bathroom. He had very severe abdominal cramps that some Benedryl and Dilaudid finally addressed. It was a rough time waiting for those drugs to take effect. It is a little more difficult trying to comfort a kid and reassure him that the medicine is going to help him without the reinforcement of a good nurse. Chris is pretty trusting and thankfully the medicines finally did their job. Chris has really been through a tough recovery (and it's still ongoing).

Since Chris didn't finish his homework yesterday, he got up a bit early to do so. He awoke in a great mood. His breakfast appetite dropped off and he only ate two pieces of ham. It was a bit challenging this morning since some time last night the heat had gone off in our room (it was temporarily fixed later in the evening). The trip to (and from) the hospital was inhospitable (due to the cold and very windy conditions) for everyone, much less for two guys from Florida. Brrr. At the hospital, Chris got a lot of things done. His first task after checking in was to go to class. He had a really good class; and he and his teacher had some good discussions about the Age of Discovery. He also showed her some card tricks with some cards she had given him. He then had some blood drawn and his mediport dressing redone. Chris then volunteered to be a teacher's assistant for the kindergarten through second grade class and helped one kid learn his alphabet. He then had a physical exam where we learned his waist had grown again as did his weight but his bilirubin had dropped to 14.4 (normal is: 0 - 1.0 mg/dl). His salt was 131 (normal is: 136-144 mEq/L). Chris is not really sure that he's making progress though.

Chris' final "big thing" for today was to demonstrate the Sony "EyeToy" game for the PlayStation and how cool it would be for use in something he calls "FUNical therapy." The game doesn't use the PlayStation controllers but rather the physical action of a kid. The kid's image is projected on the TV and into the game. Chris thought of it after playing with his friend Michael when they were roommates. There are several different games and "dance" routines. The idea was a big hit and the chief child life therapist will be getting one by the end of this week. To prove how simple and useful it is, Chris had two kids who have never played it before do so and even their parents decided to get one (it is really good exercise, even if you're stuck in a bed).

Chris then ate a McDonalds lunch in the waiting area, where he was soon ambushed by clowns. One clown, "Dr. Swami," then sat down with Chris for about a half an hour and taught him two new card tricks. It was rare and awesome and Chris really learned the card tricks (and played one on Dad).

Once back at the RMH, Chris experienced yet another bout of cramps just as he started talking to Grandma and Grandpa. We cut that talk short; after about thirty minutes, the medicine kicked in enough to call them again. Chris is learning to play the card game Hearts yet he is already challenging Grandma to the "Card Game of the Century (we think that he picked this up from our friend, Les, who had better start practicing Hearts if he wants any chance of beating Chris at their next challenge).

Chris then started on his homework, which he mostly finished. Today there was a big party at the RMH so Chris didn't get to finish it before the party. The party was grand and the food was very good; Chris ate enough although it was mostly buttered bread (right now, we're more concerned about getting his sodium level and calorie count up). Chris somehow got his energy and motivation up and as was his custom of past, was the first kid on the dance floor. No sooner than Chris got on the floor and started dancing, about a half dozen other kids (mostly younger) rushed out on the floor to join him. Soon more were to join him. The dancing wore him out; Dad thinks that many of his muscles have atrophied because of being in the hospital for the past nearly six weeks. Afterward, Chris got into line to see "Santa" so that Mom could have a new picture of him. Santa was a great guy and is the very same Santa at Macy's.

Soon after taking a picture with Santa and our friend Barbara, Chris went back up to do his homework. He was doing a really good job summarizing some reading he did when Mom finally arrived, so he'll finish it in the morning. The summary so far is some of the best writing he's done; it's probably because Dad has him doing it on the computer where he doesn't really have to "write" the paper. He's using much more descriptive language using the word processor than he typically uses when handwriting. He is now writing more like he communicates orally.

Medically, Chris had a fair day save for needing two doses of Dilaudid for some sort of pain that he says feels like a "hot knife." It is a mystery as to the cause because nothing seems to have gone on in the area in which his says he feels the pain. His eyes are still yellow but Dad (and Chris) think that they're beginning to look a little "whiter." Mom agreed when she saw him tonight. His waistline is now up to 77.5 cm and his weight is now 35.5 kg, probably due to fluid retention as he isn't really eating all that much. Mom couldn't help comparing Chris' belly to that of a woman who is 9 months pregnant -- yes, he's that round. Mom also noticed that Chris' ankles are swollen too. The medical staff is beginning to set criteria for how big that they'll allow the measurements to climb. Chris is also more emotional (easily agitated and weepy) lately and has a more consistent problem with being itchy. He also has somewhat of an odor about him that is slightly reminiscent of the BMSO, used to preserve stems cells used for bone marrow transplants. He was definitely happy to see Mom though.

Joke of the day -- What do you get if you cross Father Christmas with a detective? Santa Clues.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, December 14, 2004 8:34 PM CST

Hi Everybuddy!

The guys are back at the RMH again. Chris had a nice day save for coming up with a new kind of abdominal pain that "stung" different from his usual abdominal pain. Morphine didn't help much so they gave him a dose of Dilaudid. After about twenty minutes of difficulty, the Dilaudid helped. Of course this had to occur as while his teacher was there. She helped out and soon after Chris got the Dilaudid, he was up from some school.

Once Dad saw how the medical team reacted to this new pain (no biggie), he asked Chris if he was ready to get out of the hospital. Chris said "YES" so when the doctors did there rounds Dad said that they'd like to get discharged if they could get Dilaudid as the new pain management medication for Chris. The doctors at that time agreed but said they have to check-in with the surgeon. The surgeon came by himself a short time later and gave his concurrence to the project. Chris kept telling him that once out, he was heading home to Florida (as a joke). Both Dad and the surgeon took a while to catch on to that one. Dad also made the request for a daily blood test until his salt situation resolved itself.

All is not outstanding as Chris' belly is a little bigger and he did have some stomach cramps but his bilirubin dropped (down to 14.7) and he was definitely very "Chris-like" even when in pain and on the Dilaudid. Everyone noticed again. The surgeon still believes that the salt shortage is due to the fluid in his belly and by increasing his dose of one medicine, he'll begin to shed some of this fluid buildup. We hope that he's right as Chris' belly is a little bigger even tonight.

One special event was the Musicians on Call came by and sang Chris a song. Chris was clapping and dancing in bed as it was an upbeat kind of song. The most special event was the surprise visit of Aunt Cathy who is up visiting in New York all the way from the Fort Lauderdale, Florida area. That was a big surprise but is was overshadowed by the largest happy face balloon Chris and Dad have ever seen (Chris named it "Tiny"). We learned how difficult it must be to control the balloons in the Macy's Thanksgiving Day parade by having that balloon tied to Chris stroller while going back to the RMH on a windy (and cold) afternoon. She also brought him a magnetic dart board he is eager to try out. Chris took Aunt Cathy on one of his walkabouts and gave her a very detailed briefing on the ward's layout and purpose. It was a very cool visit. Another neat surprise for Chris and Dad was to be invited out to Chris' friend Simon's house on Sunday. A day doesn't get much cooler than this.

Chris' appetite has picked up but frankly its limited by how much fluid he's retaining. We'll be glad when the diuretic medication does its thing. His urine output is down, too.

One downside today was a few days ago, some child life volunteers asked Chris if he'd like a Christmas tree for his room. He of course said "Yes." We learned today that Chris' tree (he named "Stump") was actually a loaner from the hospital. He was hoping to bring it back to the RMH.

Chris also got quite a few calls. He got calls from Grandma and Grandpa and Mom. He was very happy (but not surprised) to learn that Mom was selected for promotion to the rank of Lieutenant Colonel. He didn't get the part that it may not happen for a while but as soon as he could, he called Mom to tell her how happy he was for her.

Medically, Chris had a good day save for needing one dose of Morphine due to stomach cramps and one dose of Dilaudid for "new stinging pains" he said is at the site of a surgery of over two years ago. His eyes are still very yellow. His waistline is now up to 76.5 cm but the surgeon believes that with the adjustment in medication that he's ordered, that is will decrease along with Chris' bilirubin level and Chris' urine output should increase. We're still waiting for that part but Chris is pretty optimistic. His appetite has improved and he ate a nice dinner.

Joke of the day -- What is Beethoven doing in his grave? De-composing!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Congratulations and good night Mom!

Love,

Chris, Alison and Pat

Monday, December 13, 2004 6:24 PM CST

Hi Everybuddy!

Today was a nice day for Chris. His belly is a little bigger and he did have some stomach cramps but his bilirubin dropped (down to 15.4) and for the most part he was more comfortable and more "Chris-like" throughout the majority of the day. People noticed.

His first major event after a good breakfast of pancakes, bacon, and grapes. He then moved right into class focused mostly on science today. It was during class that he developed some stomach cramps that a little morphine had to help.

After class, he took a break for lunch and ate the majority of a McDonald's chicken McNuggets meal and yet more grapes (a lot). At that time, Dad talked them out of trying to prescribe Chris fifteen salt tablets a day. Chris breathed a sigh of relief.

Right after lunch, Chris started on his homework but that got interrupted by a visit from the karate teacher. For this class, Chris insisted on getting out of bed and doing kicks and punches. Towards the end of this class, his surgeon walked in and was impressed by Chris' activity. He said something about balance and for some reason (that later Chris could not explain to Dad), Chris began to weep a bit. Dad thinks that Chris is becoming "Doctor-shy." Yet, the visit went well and the doctor changed some of Chris' medications and decided to refer Chris to a renal specialist. The surgeon believes that Chris' problems are interrelated and are slowly resolving. His waistline should be on the decline soon.

Chris returned to his homework (he had a bit) and then took a break to do some online research (his school project is coming along) and to research slingshots. Of course during this research, Father Steve walked in and was wondering about the curiosity about slingshots. He eventually gave Chris communion and later told Dad that Chris seemed a lot healthier. Chris also had a visit from our friend Barbara who brought some photographs of the Golden Ribbon Christmas tree lighting in the Old Post Office building in Washington, DC. This tree is dedicated to children suffering from childhood cancer. It is a national event physically put together and run by one very special family in the area.

Chris also got quite a few calls. He got calls from Grannylin and Granddad and Grandma and Grandpa. Additionally, he got a very special call from his friend Greg. The two are planning and prioritizing things that they'll do once Chris gets back to Florida. The surgeon is very optimistic about this happening soon. We certainly hope so.

Medically, Chris had a good day save for needing one dose of Morphine due to stomach cramps. His skin is less yellow (but his eyes aren't). His waistline is now up to 76 cm but the surgeon believes that with the adjustment in medication that he's order, that is will decrease along with Chris' bilirubin level. His appetite has improved and he ate a nice dinner of meatballs and grapes. Dad's hoping that his diet will decrease the dependence on slat tablets soon.

Joke of the day -- What do call it when you get struck by lightning? A shocking experience!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

Sunday, December 12, 2004 9:34 PM CST

Hi Everybuddy!

Chris spent the past 20 or so hours in Memorial Sloan-Kettering Cancer Center's Urgent Care Clinic, where he waited for an in-patient bed. He finally got one: it's the same exact one that he was last in, and he has the same roommate (who is healthier than he appeared a few days ago when Chris checked out of the hospital).

When Chris arrived at the Urgent Care Clinic last night, his sodium level was very low at 125. As a result of additional salt tablets, it increased to 132. While waiting for bedspace, someone got the idea to see whether Chris could keep his sodium level levelized for a while. The answer was a resounding "no," because it fell right back down to 125. (Low sodium level can cause seizures, so it is important to keep it in the normal range.) Chris' belly is still swollen with fluid retention. It was x-rayed yesterday, but Dad didn't know whether it revealed any new and interesting information or not.

Cooped up in a corner throughout the night and day, Chris passed his time sleeping (tough to do when he kept being awakened to take salt tablets and be subjected to other medical matters), and watched television. Dad couldn't leave to go back to the RMH to get any of our hospital anti-boredom items because Chris was still in Urgent Care; he could have moved somewhere during the time that Dad might have been gone. Chris tolerated it pretty well under the circumstances though. He doesn't particularly like being in the hospital right now but he's ok with it. He's also still somewhat hypersensitive to certain medical discussions or routine practices that used to just bounce off of him. For example, Chris had complained at one point about how his abdomen felt. The resident was talking to Dad about a wide range of possibilities, including whether the surgical incision could be splitting. That unnerved Chris, even though he can just look down and see that his belly was in one piece (no one said that it's even a remote possibility, it's just that Chris' "selective hearing" picked up on it and got him a little rattled.) Chris ate reasonably well at all meals (he's on an official high salt diet now -- before it was still the "regular" diet but we selected higher salt items).

At one point today, Chris was munching on some pretzels just preceding a new dose of salt tablets so that he'd have a little something in his tummy before loading it with only salt. While doing that, he noticed that one of his teeth was loose (the Tooth Fairy must really be his friend, because she has visited him a lot this year). Moments later, out came the tooth, along with a lot of blood. There was so much blood that he needed a barf bin and a lot of gauze and Kleenex with which to clean up. His platelet level had been tested earlier to be 18, but someone had written orders that he be transfused at 10. That's very unusual since typically he's transfused at 20 and MSKCC sometimes transfuses even higher than that. Fortunately, the platelets were available to begin a transfusion shortly thereafter.

Once he finally arrived at his room, Chris went to the playroom to use its computer. He was trying to look up Papa Johns Pizza webpage to see how far away the closest restaurant is from the hospital, but he didn't get to finish his search (Mom had already checked it out -- there are none within walking distance) because he needed to return to his room. Aside from having a taste for Papa Johns, Chris has discovered that he may actually be getting a little tired of Dr. Pepper (probably not forever though). Right now, he's enjoying more apple juice and lemonade than Dr. Pepper.

Understandably because he was stuck in Urgent Care for so long, Chris received no telephone calls or visitors today. Mom told him though that people have definitely been checking on him down here in Florida: in person, by telephone and by email.

Joke of the day -- (from Uncle Tom) -- Doctor, Doctor, some days I feel like a tee-pee and other days I feel like a wig-wam. You're too tents.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, December 12, 2004 7:09 AM CST (Late for 12.11.2004)

Hi Everybuddy!

This is a late update for yesterday, Saturday, December 11, 2004. It's late because right around bedtime, Chris returned to Memorial Sloan-Kettering Cancer Center's Urgent Care Clinic, where he remained throughout the night as he awaits an in-patient bed (again) because, among other reasons, his sodium level has fallen, his abdomen is swelling and he has low urine output again.

Saturday started out fine though. Chris was allowed to sleep in a little late. When he awoke, he ate a decent portion of ham and brown bread for breakfast. Afterwards, he worked on some of his homework, including his research project before he (compliments of "Ronald" the stroller) and Dad headed over to the movie theater to watch, "Christmas With the Kranks." They thought that the movie was just ok, but the ending was good. Chris ate about 1/3 of his popcorn while there. When it came to eating for a hotdog though, Chris claimed that it didn't taste good so he only nibbled on it. Chris also began to say that he did not feel well. As a result, Dad brought Chris back to the RMH (rather than getting out and about some more in order to try to give him a sense of normalcy).

Over the course of later in the afternoon, Chris received social visits from his current hospital teacher and Uncle Brian. In fact, the visits of two of them overlapped a bit. That was a nice afternoon and games were played.

As evening arrived, Chris began to run a low grade fever (37.79 C or 100.04 F). Eventually, Chris asked to go back to the hospital. Chris is an experienced patient, so Dad agreed. At about 9:30 p.m. last night, they reported to the Urgent Care Clinic because of the following symptoms: low grade fever, cramping that Chris said became more regular as time when by, his belly has noticeably grown in size again, he is no longer able to walk erect (he walked that way while he was in-patient before and frankly did not completely snap out of it until he received a dose of dilaudid when the last "belly tube" was removed), low urine output (only about 100 ml about every 5 hours), and Chris' complaint that his calves make him "walk wobbly."

So, Chris and Pat spent the night in the Urgent Care Clinic. Lots of medical folks (residents, fellows, nurses, etc.) came by to check on Chris throughout the night. Mom, who is still at the moment in Tampa, only knows that the sodium level was at or below 125. Under Chris' circumstances over the course of the past couple of months, that earned him a new admission ticket to the hospital. He is only awaiting bed space on the pediatric floor. Again.

Chris and Dad gave Mom a quick call last night to let her know that they were heading back over to the hospital, but at that point in time, Mom did not know how serious the situation was and did not want to unnecessarily worry his friends and family by posting the update without more information. That's why this update is being sent out this morning, rather than last night. Aside from the above symptoms, Chris was doing fine. We'll see what develops today.

Joke of the day -- (from Uncle Tom) -- Doctor, Doctor I feel like an apple. We must get to the core of this.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, December 10, 2004 7:32 PM CST

Hi Everybuddy!

It was a good day for Chris but not a great one. At one time, Dad had to give him some pain management medicine for some abdominal cramps. Chris also had some "stinging" along some of his incision scar that some Hydrocortisone cream helped. Also, Dad measured his waistline and its growing in size again. Sometimes he was a bit moody but mostly Chris was still mostly "normal." His walking is still a bit awkward.

Dad let Chris sleep in a bit until Dad remembered that they had forgotten to do Chris' homework because of all the "celebration" of the night before. They got through all the "morning stuff" and a breakfast for Chris of buttered brown bread and ham and then headed off to the clinic where Chris dug into his homework. He made a good dent before the teacher showed up and Dad took the heat for not giving him time to do his homework. It was during class that Chris needed a pain medication. Chris was able to finish his homework and do his science assignment. The teacher also presented him with a Monopoly game at the end of class. He loves Monopoly. She still hasn't seen Chris as his totally cheerful self. Other than getting some more sodium tablets, there was no contact with the medical team today. The guys ended up staying there for a while as the pharmacy misplaced his prescription for a while.

The guys next stop was to the RMH. Since it was raining, they decided to stay there, have lunch, and then do his homework for the weekend. Chris had some ham and macaroni and cheese that Dad made but Chris' appetite was a bit subdued. Chris did make short work of his homework though.

While trying to do his homework, Chris had some pleasant interruptions. He got a call from Grandma and Grandpa, a couple of calls from Mom, and finally a call from his good friend Greg. Chris is really eager to get back and hangout again with Greg.

Chris and Dad went to meet with Chris' former teacher to take her out for a Hanukah dinner (OK, it was at an Italian restaurant). The two had a good time that they call "Closet time" (Chris' last "classroom" was a closet in the playroom). At one point they spoke about Chris' helping Dad develop the volunteer program for his school. They also about other aspects of school and Dad mentioned that with all the time he has missed, that Chris might be held back in fifth grade. Chris melted when Dad said that but between what Dad said to reassure him that it was only a possibility and the fact that his teacher of many years explained that he's been keeping up with his work and would get a report from his current New York teacher, he finally settled down. Its rough explaining possibilities and Chris said that he's tired of hearing "popups" or what he calls incremental reports of bad news. He's right. He has been keeping up with his classwork though and an hour spent one-on-one with a teacher goes a long way. That notwithstanding, Chris ate a half a loaf of Italian bread loaded with butter and a third of his piece of cheese pizza.

Once back at the RMH after dinner, the guys headed off to a special Christmas Party put on by a nice group but Chris wilted pretty quickly and wanted to go back up to the room. He played his GameBoy for a bit and unlike the last three weeks, he was really into the game, was animated and was making his usual "commentary."

Mom's come up with an interesting theory. She believes that there might be something wrong with Chris' only remaining adrenal gland (he lost the other one in 1999). When you look at some of the symptoms for such an event, there is a lot of commonality. Dad repackaged the information she sent in to an e-mail to his doctors in the hopes of investigating this on Monday. It is the one organ/gland that Dad hasn't received any reports back on lately post-surgery.

Medically, Chris' day started well but had a few speed bumps. He did require a pain medication today and his waistline has grown possibly indicating that he's retaining fluids that he shouldn't be. Some things like attitude, maneuverability and bowel movements have noticeably improved. This is a really tough time for Chris as there has been a great deal inconsistency in his recovery and the doctors still can't put their fingers on what is exactly wrong that's been impeding his recovery.

We were sorry to learn that one of Chris' big New York supporter's son has got pneumonia. Chris is working on something to cheer him up already. We wish him a quick recovery.

Joke of the day -- (from Uncle Tom -- one for Grandma) -- Doctor, doctor I keep thinking I'm invisible! Who said that?

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

Thursday, December 9, 2004 8:22 PM CST

Hi Everybuddy!

Chris is back! Amazingly, twenty minutes after they pulled the abdominal drain Chris was back to "normal" and cracking jokes, walking vertically (not hunched over), and was feeling pretty chipper.

The day started with Chris NPO save for a few medicines. The reason was that Chris had an abdominal CT scan to see if it was safe to withdraw the drain to his abdomen. The scan was quick and went quite well as Chris was back with the "old crew" who has been scanning him for years. Best yet, he didn't have to drink any oral contrast. It doesn't get much better than that.

They also drew blood again and Chris' bilirubin dropped down to 19.7 and his salt rose to 131. The comparisons for fluid from his drain and urine showed that his urine was decidedly doing more to eliminate bilirubin than his drain so all of the teams voted on removing the drain. This was done late in the afternoon and a very nervous Chris learned that he would be awake for it all but he was pre-medicated with some Dilaudid first. If anything, the drain removal "tickled" and then they arranged for Chris to hangout in the bed area until the effects of the Dilaudid wore off. Thing is, that happened within about twenty minutes after the procedure and what was left was "Chris." He was back to wisecracking, dancing, and doing karate moves. He was also set on going to the Outback Steakhouse. Everyone that saw him earlier in the day couldn't believe that it was the same kid. Of course Chris just had to call Mom right away to report that he was back to normal (albeit the same color as Spongebob). Chris was also seen by one of the oncologist who didn't have anything new to add and was basically catching up with Chris after a few years.

Chris had a nice class day with his new teacher but they had to reposition from the classroom to a warmer part of the day hospital. Chris was even wearing a blanket that she had procured for him. When he got called in to the surgical team for an examine, he was shivering in front of the surgeon who then ordered his mediport cultured in case it was an infection. He's been unusually cold intolerant lately. That seems to have subsided some as on the walk to and from the Outback, it was cool and drizzly and Chris didn't have a problem with it at all. Its been really weird lately.

The surgical exam was neat as Dad looked at all of the scans over the surgeon's shoulder and Chris' liver is indeed growing back (measurably so). We did notice some Neuroblastoma, too so the Nb team is still in the search mode for something to do for Chris as soon as possible. We also decided to hang around MSKCC a bit longer until it becomes clear that Chris' liver is healing. Chris' case has been unique for the surgical and Neuroblastoma team and they've been communicating with a lot of liver specialists. We don't want to impede progress in that effort. Having said that, the surgeon also decided that Chris' platelets were high enough and his bilirubin downward trend sufficiently strong as to preclude him from doing anything "medical" at the clinic tomorrow. Chris will still be heading in for an hour of school tomorrow at ten.

Chris' appetite is seemingly on the rebound although he did loose his dinner a couple hours later. He had nothing at the start of the day (and was desperately thirsty throughout the wait for his scan). He ate two chicken McNuggets for lunch but had fifteen salty fries. After walking twenty-three blocks in a cool drizzle (OK, he rode most of the way), Chris had four heavily buttered slices of bread and ate about a third of a huge bowl of macaroni and cheese. Ordering was different as Chris "teared up" while the server was taking the order. Dad explained that he had been wanting their macaroni and cheese constantly throughout his three week (+) hospital stay and since he's still yellow, she sort of guessed something was wrong. Actually it was a combination of him being very happy to be there and an after effect of the Dilaudid. She treated him like a king. He gave her a happy face pin (and sent one back to the chef) and she gave him a glow-in-the-dark frog pin that she'd earned. Chris told her that it was his best day in New York right after dinner and spoke eloquently to her manager so she could be awarded another pin for customer service.

Chris got calls from both sets of grandparents and from our friend Les. Les' call was while Chris was at the Outback and by then, he was down right cocky (much to Les' regret). Anyone who spoke to Chris after the drain was removed has seen the return of Chris. Chris also has bumped into a family that's been here for a lot of treatment. The boy has gotten much bigger than either Chris or Dad recalled and is doing wonderfully. They noticed, too. Chris also ran into an "antibody buddy" who is no longer the infant we recalled but is now a beautiful little girl.

Medically, Chris' day started OK and it got really good. We not euphoric (as loosing his dinner puts things back into the guardedly optimistic mode), but we are all quite pleased. We know that we really need to begin some offensive kind of things against that residual Nb evident in this last scan and soon.

Joke of the day -- (from Uncle Tom) -- What did the cannibal order to go? Pizza with everyone on it.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

Wednesday, December 8, 2004 7:56 PM CST

Hi Everybuddy!

There was a lot of medical attention focused on Chris today. As soon as we got into the clinic, none other than the surgeon policed Chris up for an examination. The new thought is that the drain has done about as much as it can do so the surgeon wants to remove the drain and "transfer" some of the output back to the urinary tract (in a way). Needless to say, Chris was OK with that. To do so requires coordination with two other teams and the outcome will be influenced by the results of a CT scan tomorrow morning (looking for blockages).

Chris' bilirubin dropped back down to 20.5 and his salt dropped a bit, too. They decided to increase Chris' salt tablet dosage (gag) and the medicine that encourages "secretions" in the liver. The chief of the Neuroblastoma team also noticed that Chris was getting a medication that leaches salt and they all decided to cut that back by 60%. They ordered a lot of blood drawn today and also a urine sample. One of Chris' favorite nurses policed him up and let him hang out in a back treatment room while waiting to do one thing or another (thanks Kim)! It has a bed and TV. All-in-all, it was a very productive day.

Chris' appetite is still surpressed yet he is trying. He started the day with one little doughnut, had three chicken McNuggets and eight fries for lunch, and had two fair sized, heavily buttered pieces of German bread and a quarter of a bratwurst for dinner. For the later, we finally went to a German restaurant we've walked past for over five years but Chris got a bit lightheaded while there so he didn't eat much.

Once back from the clinic, we took a little break and then went on a successful shopping mission assigned by Grandma and Grandpa. After that, Chris wanted to go to the Outback Steakhouse for some macaroni and cheese. Unfortunately, the address in the yellow pages is in the opposite direction of its actual location so we'll try again tomorrow if Chris is up to it. Coming back, Chris finally decided to try the German restaurant (mostly for the breads, Dad is sure). He was pleased with his choice although he didn't eat much of the "real" meal. Dad thought the restaurant was quite good. Chris wants to give Uncle Brian the address.

Chris got calls from Grandma and Grandpa and our friend Barbara. He also got a "challenge" call from our friend Les who setup the possibility of playing some online chess with Chris.

Chris had class with his new teacher and they had another good day in class and finished off all of the handouts sent to him from his Florida teachers. Tomorrow is going to be "Math Day." He is working on a research project of the state of Indiana, Grandpa's home state.

Medically, Chris is managing his pain well but did need one Codeine tablet for abdominal pain. He is still battling with those salt tablets and now is having to take two more a day. Amazingly, he didn't loose any meals due to them. He was so tired tonight (possibly due to the salt imbalance) that he fell asleep while Mom was reading to him over the phone (Dad had to pry it out of his fingers when he noticed that Chris hadn't made any of the usual comments).

Joke of the day -- (from Uncle Tom) -- Doctor, Doctor I feel like a spoon! Well, sit still and don't stir!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

Wednesday, December 8, 2004 5:48 AM CST, late posting for 12.07.2004

Hi Everybuddy!

Well, the guys made it back to the Ronald McDonald House despite a little rise in Chris' bilirubin, a drop in sodium, and a drain bag that just keeps filling itself up. Some theorize that the decrease in urine output is somehow linked to this. Chris and Dad are exhausted as last night Chris got a roommate that was having a difficult go of it due to mucositous (mouth sores and all) and was getting all sorts of antibiotics and pain medications. People were always coming and going, pumps were beeping, and the only one who seemed to sleep through it all was the teenager's Mom.

Dad also spent a good deal of the night working on a little problem that blossomed into a mess. Chris was supposed to have his needle changed yesterday (they normally replace the needle in his mediport every seven days). When the nurse went to deaccess him, Dad noticed some redness due to the tape and asked that Chris be left deaccessed for a few hours (a routine request). The nurse consented (thinking it a good idea) and "heparonized" him with a blue Heparin (usual used in kid's mediport for short duration). Several hours later when Chris asked the nurse's replacement about getting accessed again, she didn't know anything about it. Dad also stated that he had been heparonized with a blue instead of the universally used yellow dose (higher concentration and for longer duration). She didn't think that it was a good idea to leave it with just the blue dose but said that she would look into it. She did and said that although it is not the normal procedure, it was OK for Chris and his mediport should stay clear (if it locks up, that means surgery to replace it). Additionally, she said that there was no intent to draw blood samples from Chris in the morning.

Dad then went out to see the resident to talk about that as the bilirubin results have been a focal point in Chris' case management. Also, Chris was just above the transfusion threshold for platelets in his last CBC. The resident said that she would speak to the fellow. Dad overheard his response which was something like that it would have to wait until after midnight rounds. Dad sat up until well after when "midnight rounds" should have occurred and then went back to the medical staff station. Someone must have tipped the fellow off he was there as the fellow eventually came out and after a ten minute discussion, gave Dad the distinct impression that they would both access Chris again at 0700 and draw blood to have results back by 0900 (they were eager to discharge us apparently). Well, it didn't happen. Just as Dad was getting mobilized to take his case to the day crew, their doctors came in and basically said that everything that Dad had suggested needed to be done and would be done. Everything finally was put in order right after Chris' school class and they learned that Chris' bilirubin rose again, his sodium dropped, that he needed platelets, and they wanted to recheck his electrolytes. Now why would someone think he didn't need any blood work?

Chris had one visitor who was Father Steve who gave Chris communion again. He also got calls from Grandma and Grandpa.

As if last night wasn't bad enough, the trip back to the RMH was done during a cold, windy, and rainy evening. Ronald (his stroller) was loaded down with Chris, his school books and a couple of other bags hanging from the handlebar. Dad had his rucksack on, too. We sort of looked like street-people but we didn't care as we were finally free. Amazingly, Chris didn't get wet as he had a lot of stuff surrounding him.

Chris had class and then later a social visit from his new teacher. Chris had another good day.

Medically, Chris is managing his pain well and needed no pain medication. The drain sticking out of him is awkward and is still draining quite a bit. Dad hides it under his oversized T-shirts. He is still battling with those salt tablets but only lost one meal.

Joke of the day -- Why do you keep doing the backstroke? I've just had lunch and don't want to swim on a full stomach!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

Monday, December 6, 2004 7:44 PM CST

Hi Everybuddy!

Chris had some good news today; his bilirubin dropped again and is now in the high teens. He actually could have gone home today but neither he nor Dad were overly eager to do so as for some reason after one short walk his drainage bag filled up! The deal is that he can go back to the RMH but he must keep the drain in and he's not keen on doing that. Yet, we will be out of here tomorrow and do things outpatient until the bilirubin drops just a bit more. The surgeon was a bit surprised (as we had tried this two weeks ago) and conceded that the radiologist might have made a good call after all. The drain still keeps draining.

Chris and Dad also had a visit by one of the oncologist and basically there is nothing that can be done here until his bilirubin drops a bit more in terms of attacking his remaining cancer. He did say that he would call around and see if anyone has a protocol that Chris can do with elevated bilirubin.

Chris had several special visitors today and it seemed that most tried to come by as Dad was over cleaning the room at the RMH (in anticipation of going back there soon). One visitor was Father Steve who gave Chris communion. The surgeon came by. His friend Simon's Mom came by and dropped off a neat spy toy (yup, she knows Chris). He also got calls from Grandma and Grandpa and from his friend Greg.

He also had class and then later a social visit from his new teacher. Chris had another good day in class but dozed off because of the Morphine. The teacher was nice enough to break the class into two class periods today.

Medically, Chris is managing his pain well and needed just one dose of Morphine. The drain sticking out of him is a nuisance that he doesn't really want to take back to the RMH but Dad talked him into it rather than staying here any longer than we need to. He is still battling with those salt tablets and often looses part of the meal he is taking them with at the time.

Joke of the day -- Why did the chicken cross the road, roll in the dirt and return across the road. Because he was a dirty double crosser.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

Sunday, December 5, 2004 8:23 PM CST

Hi Everybuddy!

It was basically a boring day despite Chris being in the same room as one of his longtime friends from here; it was just a slow day for the boys. The two did get together a few times and play on Chris PlayStation. His roommate likes Chris' EyeToy in particular and it is a good video game that gets the kids moving as your body is what controls your action in the game. Chris is going to recommend to the hospital that they get some for its patients for therapy.

One bit of good news was that Chris' bilirubin dropped to "22." The drainage has slowed down a bit so maybe he may be out of here for a while on Tuesday or so. Chris didn't have any shoulder pain troubles today but his abdominal cramps came back once from their one day holiday. His waistline measurement increased a bit despite the abdominal drain.

Chris didn't have any visitors today but he did get a call from Grandma and Grandpa. They had a lot of good jokes for him today.

Medically, Chris is managing his pain and his pain center has back to his abdomen. He is still battling with those salt tablets and they won during dinner. He lost most of that.

Joke of the day -- Doctor, Doctor I think I'm a burglar! Have you taken anything for it?

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

Saturday, December 4, 2004 9:24 PM CST

Hi Everybuddy!

It was a good day that just got "cooler" as the day went on. Dad let Chris sleep in a bit and Chris awoke just prior to the visit of his surgeon. The surgeon apologized for yesterday and explained what happened and what we can do to get back on track. Chris nor Dad don't hold him responsible as he can't be everywhere at once. If this current experiment with the drain doesn't work, we'll either try the biopsy again with radiology or the surgeon will do it through another means. Chris was also told that based on the drainage over the weekend, he may be released to live at the RMH. He will then come back to the day hospital daily for all of the blood work and all. Basically, the surgeon and the liver specialists around here are stymied and what Chris has happens occasionally in adults. Time seems to be what improves the situation as most of Chris' other liver functions are nearly normal. The surgeon also promised to get the Neuroblastoma team looking for something that Chris can take to fight the remaining cancer despite the high bilirubin.

Chris and Dad spent a lot of the day walking, playing some games, and watching some movies. Later in the afternoon, Dad ran into Chris longtime hospital friend from here (who is also in-patient) and he invited him to the room. He and his Mom did come and spend about two and a half hours playing PlayStation and some video games. At one point, Chris officiated and Michael opposed his Mom playing some EyeToy games. The EyeToy system puts the player and the game on the TV screen and it involves a lot of physical activity. Michael was very surprised when his Mom beat him on several games as although she's not too good with game controllers, she used to play team soccer and it definitely showed in the game. Chris and Michael also played some head-to-head Lego racers. Both guys had a good time and the parents had some good laughs.

Chris kept experiencing shoulder pain throughout the day but despite that, he got to feeling much better throughout the day. By the end of the day, when Chris had his evening walkabout to do, he wanted to go by himself and he walked the hallway twice by himself while Dad made his bed. He really was feeling fine.

Other than Michael (who is soon to become Chris' roommate -- "sleepover," Chris had some visitors and neat phone calls (and a lot of mail). Chris spoke with both sets of grandparents. He listened to a lot of jokes from Grandma and Grandpa and then got to sing "Happy Birthday" to Grannylin while talking to her and Granddad. Barbara and her husband came by for a nice visit.

Medically, Chris is managing his pain although his pain center has shifted to his left shoulder (probably sympathetic-like pin). Chris ate well and didn't even lose his dinner because of the salt tablets. We're not sure if its good or bad, but he is getting a fair amount of drainage from his line.

Joke of the day -- Doctor, Doctor what did the x-ray of my head show? Absolutely nothing!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

http://www2.caringbridge.org/fl/chrisbecker/

Friday, December 3, 2004 9:09 PM CST

Hi Everybuddy!

Today was a very disappointing day in that the biopsy that was to occur got "turned" into another fluid draining effort. They did drain quite a bit of fluid (about two liters) but it wasn't what either Dad, Chris, nor frankly the surgeon expected. Basically, we still don't know anymore about his liver than we did two weeks ago.

Chris was NPO all this morning and both he and Dad were happy to learn that Chris was called to radiology early. Once in radiology, they learned that they were still about a half hour from going into the scanner. Dad also met with the anesthesiologist and learned that the objective of the procedure had been changed but both he and the doctor would learn more when the met with the radiologist doing the procedure. When they finally did, she confirmed the modified objective and said that she had spoken with the surgeon who had ordered to whole thing to begin with. Dad signed the consent form reluctantly and then headed back to the ward to determine if they had heard of any of the changes. The ward called the surgical team nurse practitioner and even she was surprised by the change. Eventually, the surgeon came to visit Chris after the procedure and Dad relayed what happened. The surgeon understood why the change (due t low platelets) but wasn't too happy about it all. To add injury to insult, the crew that came to pick up Chris and return him to the ward had no pain medications, no one did and for some reason no one sent any down from the ward. Chris was making some real noise (he was still waking up). Dad finally got him to control his anxiety about the pain and he moved from radiology all the way back to the ward without any "outbursts." Everyone was quite impressed and once back in his room, he pretty much caved in but fortunately, some morphine was made available soon after. Dad later talked to the surgical fellow and outlined his displeasure and concern about the whole incident.

Chris had several special visitors today. The first one was the hospital's priest who is keeping an eye on Chris. Chris and Father Steve are getting along rather well. He then had a "social" visit from his current New York teacher who helped distract him while he was waiting for some morphine once back in the room. He also had another long visit with the departing child life therapy who finished her internship today. The guys tried to talk her into getting a EuroPass and see some of Europe before searching for her next job. The big visit was from Uncle Brian who basically hung out and was there for Chris when needed. He stayed with Chris while Dad went out to get Chris some McDonalds. Chris was occupied much of the time playing with his new GameBoy DS that Grandpa and Grandma sent him. Its arrival was timely and it lured Chris out of bed and between that and a walkabout, both Dad and Uncle Brian witnessed yet more fluid drain from his drainage tube. Chris also got a call from Grandma and Grandpa and by then he just had enough energy to thank them. Chris had another good day in class.

Medically, Chris is managing his pain well and now has yet another drain sticking out of him. He was disappointed with the whole was "biopsy event." Chris ate a light dinner and had tried to pre-medicate with his special idea with dealing with the salt tablets but it didn't work again and he ended up loosing some of his breakfast but Dad couldn't see any of those pesky salt tablets yet again.

Joke of the day -- Why did the bees go on strike? Because they wanted more honey and shorter working flowers!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

Thursday, December 2, 2004 9:13 PM CST

Hi Everybuddy,

Today had yet another bit of a setback. Chris' bilirubin dropped only to 34.6 and his sodium dropped to 128 and that's with him on four salt tablets a day (gag)! The salt tablets are a biggie to him as they make him nauseous. As a matter of fact, he lost part of his breakfast this morning despite having taken "the Chris Protocol." We'll probably add Zofran to the lineup.

Chris had several special visitors today. The first one was the hospital's priest who is keeping an eye on Chris. Then the clowns from the "Big Apple Circus" finally found him (thanks to help from the Child Life Department) and they remembered Chris right a way. Chris and the clowns "sparred" playfully for about twenty minutes and you could tell that the clowns were actually having a good time, too.

Chris "New York teacher" (his first one) came for a long visit and Chris was a little less animated for her but was still active throughout her visit. She read his short essay from yesterday, too. Although he didn't joke around much with her (well, as much as with the clowns), he still likes just being around her (like through many of his previous treatments).

Chris also had a long visit with a departing child life therapy intern who helped him get his room changed to one with a working "entertainment center." She and Chris talked about a Star Wars movie that was playing and he liked that visit, too. Chris got another call from Grandma and Grandpa.

Chris had another good day in class and worked on some social studies focused on the Hopi Indian tribe and then some science. The teacher liked Chris' essay. Chris got more homework to do that he grumbles about but he secretly enjoys the distraction.

Medically, Chris was unhappy to learn that his bilirubin didn't drop much but that his platelets did. He is concerned that they will be too low for tomorrow's biopsy and that he'll bleed again (he actually did one time when they did a bone marrow biopsy with low platelets -- he doesn't forget things like that). He was so concerned about this that when the new fellow came on board for the night shift, Chris asked him about getting platelets in such an articulate manner that the doctor really took note. He then told Chris what his plan was for this and Chris was quite satisfied. His special idea with dealing with the salt tablets didn't work out as well as he hoped that it would. He ended up loosing some of his breakfast but Dad couldn't see any of those pesky salt tablets. Go figure.

Today was not without its rough spots and it focused around Chris and his homework. Chris and Dad worked through that. Chris then quickly changed the subject and asked how long he's been in New York (five weeks). He then cracked up Dad by stating that he's really saved quite a bit of allowance then and won't Mom be surprised when he spends it eventually (She keeps track of such things).

Joke of the day -- (From Dr. Bovine -- the clown) -- How do you make seven even? (Chris' response --"Hmm, that's odd!") The real answer is: drop the "S."

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

Wednesday, December 1, 2004 9:01 PM CST

Hi Everybuddy,

Well, Chris' bilirubin (dubbed William Rubin by a friend) has struck again and climbed back up to "35." This took the medical team by surprise so the needle biopsy canceled yesterday is back on for Friday at 1400. Chris said that he wasn't surprised and "Expected it." Chris' sodium held at "130" so he's still on four salt tablets a day (gag)!

The other big news is that Chris has moved again! He and Dad got permission to slide Chris' stuff to the other side of the room that he's been in so he now has a TV/DVD/VCR system that works. His has been out for over three days. Its been a boring stay this hospital stay.

Chris' teenage roommate had his very first dose of chemo today and he followed a lot of Chris' suggestions with good effect. They were so appreciative of all the insights that Chris and Dad gave them that they brought a DVD for Chris as a "thank-you." It was a cool one: "Spider-man 2." Their kid will do well as he did a remarkable job working to recover from his surgery and only felt sorry for himself for about two hours before he decided that he was going to beat his cancer. His parents took a bit longer but Chris and Dad thinks that they're now off to a great start. We wish them luck.

Chris had a really good day at school and today got lots of homework to do. After a lunch break and a walkabout, Chris and Dad set out to finish it all so that they could goof off for the rest of the afternoon. Chris had some science questions to answer, a cursive writing assignment, and then his essay. Dad showed him how to add pictures to a document so we went hunting for pictures of robots and Chris' story is about a super hero that makes robots "for the government." Our friend Barbara came by and read it and gave it a thumbs up. Chris had a very pleasant visit with her, too.

All sorts of people checked in with Chris throughout the day. First was a call from Grannylin and Granddad, then a visit from Barbara, all sorts of greeting on his webpage, a call from Grandma and Grandpa, a call from his "New York Teacher (who will hopefully visit tomorrow), and a call from his good friend Greg. He sounded a little more powerful (voice-wise) on each call. The nurses, priest and social worker all commented on how much more improved that he looks and noticed the return of his "quick wit" (that no one is safe from).

One of the maintenance ladies has especially become fond of Chris. She came in during dinner and sang a song to him and then phoned in to her church during which Chris got to speak with her pastor. When she heard that he was going to the "good side" of his current room, she quickly got everything together to get it cleaned so he could move over sooner.

Chris had a good day today although it started out with some bad stomach cramps that a couple of bowel movements, a walk, and then a few medicines finally got a head of. Ouch! He also developed a new "protocol" for taking his salt tablets (they make him nauseous). First he takes something like a "Gas-X," then a Benedryl and then his salt tablets a little later while he's eating. The nurse smiled but made it happened. As usual, his idea worked (possibly only because he was in-charge of the goings on -- who knows).

Joke of the day -- How do you find King Arthur in the dark? With a knight light.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

Tuesday, November 30, 2004 7:38 PM CST

Hi Everybuddy!

Chris had a rough start today as we knew that sometime today he was going to have a biopsy done on his liver so he was NPO (couldn't eat or drink anything). The ward staff had no idea when it was to occur and needless to say, Chris awoke hungry, thirsty, and missing Mom. Eventually, Dad went down to the radiological suite where they do the procedure and learned that Chris was not on their schedule. As it turns out, Chris could have gotten biopsied as the surgeon had some arrangements made but fortunately, Chris' bilirubin took a big drop to 27 so the surgeon canceled the procedure all together. He also canceled "draining" out Chris' abdominal area as yesterday's ultrasound didn't indicate much fluid residing there. Learning all of this took some time though.

Chris also awoke with some stomach cramps that amazingly got worse after a bowel movement. They eventually settled down with a combination of some anti-gas medication and a short walk. Learning that he could eat also helped and he had a sausage patty and a cinnamon bun for breakfast. A new nursing assistant also taught Chris and Dad a new way to do a warm pad using the hot water from the coffee machine. Chris and this nurse really got along well all today.

Before we learned that all of the procedures were canceled, we learned that this morning's blood draw for one test was bad so he had to get more drawn but this time through a peripheral site (wrist, hand or arm). These are one thing that he still hates. Dad sprayed the freezy spray while a doctor did the IV. Despite not liking them, he was relatively in control while one of the doctors poked him -- twice. Ouch!

Things started to settle down once his teacher arrived save for one more bout of abdominal pain that she alerted the nurse about. The two had a good class and are doing a project about Hopi Indians and also did some things in his Science book. Chris has been out walking quite a bit today and it seems that every time he went out he "melted down" a bit because Mom's departure and it always seemed to be when a doctor would walk by. The surgeon specifically added a "smiling face" as a precondition for Chris' discharge (that Chris is actively pursuing).

Since Chris was NPO this morning, both Chris' nurse and Dad thought that it would be a good idea for Chris to go back on fluids. The doctors agreed. Soon after he was told to start eating and drinking again, they took him off of fluids and the surgeon reminded Chris that eating well was also a precondition for his discharge.

Chris was hoping that the "karate person" would come back today. Yesterday, Chris had a bedside karate class with an instructor from the group "Kids Kicking Cancer." She was quite good and thought him a breathing exercise and then they did some punches, chops, and blocks -- all in bed. He really enjoyed it and she was impressed with his style. Maybe he'll go back to class when he mends more. It was a nice program but only offered in a few hospitals presently.

Chris did get to speak with Grandma and Grandpa and they exchanged jokes. He was much more animated than he's been in a couple of weeks. He also spoke with Mom in the morning and that was a little rough until she started talking about Genie and some mail that he's gotten back there.

Chris and Dad did play some PlayStation today with Chris being the indisputable victor in today's races. Although Chris won some Lincoln Logs during Bingo last night, he didn't want to build anything today but said that he would tomorrow.

During bath time, Chris' "humor" started to show up again. He thanked Dad for wiping him down using the Jim Carrey "cheek speaking" method (and we're not talking about the ones on either side of his face). It was gross but funny.

On a more serious vein, Chris new roommate is apparently 17 and newly diagnosed with a cancer in which the first step is to remove the tumor and then pursue chemo. He didn't take the news well (thinking that just the operation would handle the problem). After a bit he got more composed and had to walk through Chris' part of the room to get to the bathroom. Once out, Chris and Dad started talking about doing chemo and all and the guy gained a new appreciation of the effort and felt a little better about starting on his own adventure.

We've added some new pictures to his website.

Joke of the day -- What did the limestone say to the geologist? Don't take me for granite!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

Monday, November 29, 2004 7:50 PM CST

Hi Everybuddy!

Chris had another quiet day in the hospital and is even disconnected from his pole tonight. Save for the uncertainty as to what is causing the high bilirubin, we'd probably be sent "home" to the Ronald McDonald House. In a hopeful move, Chris' bilirubin count dropped to "37" which is still nothing to write home about but at least another decline. Dad did talk with the surgeon this morning and the surgeon asked that the biopsy not occur until Tuesday so that he could be there when it happened.

His sodium level did drop a bit today down to 131. They saw that Chris was doing a good job eating and drinking and despite the drop, continued with the move to disconnect him from his IV fluids. Chris did get disconnected and even got de-accessed (this needs to be done every seven days). He eventually got re-accessed in the evening in anticipation of tomorrow's test. They will reevaluate him and his fluids tomorrow.

The ultrasound happened today but it came as a complete surprise to everyone on the ward to include Dad who was out getting some macaroni and cheese to make for Chris for dinner at the time. When Dad got back from the market, he found Chris' empty bed. When he didn't find him in the playroom, he headed for the nurses station and learned that Chris and his nurse were at the test. It went well and the head radiologist was in the room during the test again. Chris had a smile when he saw Dad again. Actually, he had a lot of smiles as he was wearing a smiley face bandanna someone had sent him.

Chris was generally in a good mood today and joked around with several people one being the priest who came to visit and give him communion. Later, one child life volunteer asked Chris if he could get Chris anything and Chris replied "A check for a $1,000,000." The guy didn't get it and thought that Chris was serious. He eventually laughed when he "got" it. Chris also joked around quite a bit with Cate when she called this evening.

His "humor" came and went and he was quiet for his teacher's call and for the call from Grandma and Grandpa. He did have several funny moments and has found humor in some of the things he's heard from the other side of the curtain and his new teenage roommate. The surgeon came by just before bedtime and he got a good taste of Chris' humor as Chris subtlety suggested in a variety of ways that he thought that it would be good if the surgeon would discharge home. The surgeon didn't see it coming but eventually caught on and told Chris that he's have to eat more before he could go. He told Chris that eating was good for his liver.

There was also a downward "trend" with stomach cramps. He didn't require any pain medication but did get some other "stomach" oriented medication three times. He's been fladulating more today too (yeah, great).

Chris had a good class period with his teacher and they began working on a "big" essay about what super powers Chris would like to possess. His class in Florida is also working on the project. She also came by later in the afternoon to socialize with Chris. Chris also got to talk to his previous teacher so you can tell its a good bunch.

The major "speed bumps" of the day were associated with Mom's departure for Florida. He cried a bit when she finally left and then he cried a little later when we called home to see if the girls (Mom and Genie) had gotten home. Mom cheered him up when she told him that Les and Ingrid had gotten Genie a "makeover." That's one pampered border collie.

Joke of the day -- What's the difference between a dentist and a Yankees fan? One roots for the yanks and the other yanks for the roots!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

Sunday, November 28, 2004 9:17 PM CST

Hi Everybuddy!

Chris spent a quiet day in the hospital today. After negotiating with the doctor, Chris was to drink more fluids than he did yesterday in exchange for reducing the rate of flow of fluids through his IV; the net result was to have remained the same: reduced fluid intake combined with a high salt diet. The sodium level was nearly at the norm (133, with a norm of 135), so he did well in that regard, but he did not drink as much as he was supposed to have. Therefore, he did not urinate as much as he was supposed to have. If his body isn't too out of whack as a result, Mom suspects that a middle ground may be reached in which the rate of IV flow may be increased but not to yesterday's rate, while Chris may drink more than yesterday but not as much as he was allowed today. We shall see . . ..

Chris' bilirubin fell a bit today: from 45 to a little over 40; it is still much too high and Chris remains yellow. An ultrasound of his liver and abdomen was supposed to have taken place, but it did not occur today, apparently for scheduling reasons. The CT-assisted liver biopsy will likely take place on Tuesday because the surgeon wants to be present and he already has a full day of surgery tomorrow.

At least Chris did not hardly complain at all about stomach cramping. The cramping is suspected of being caused by trapped gas, and a large part of the itchiness was thought to be due to the high bilirubin. This morning, Chris negotiated with the doctor about his medicines. One of them, the powdered stuff that he does not like, is designed to reduce some of the processing effects of bile through the liver and the high bilirubin, such as the itchiness. But Chris really doesn't want to take it. Chris also doesn't trust the new gas medicine to work as well as morphine. So, the deal is: 1. If Chris feels the cramping, he is to try the new gas medicine first. If it doesn't work, then he can request morphine or some other more appropriate medication. 2. If Chris feels itchy, then he must take the powdered stuff (Cholestyramine) first. If it doesn't cure the "itchies," then Chris can request more Benedryl. Interestingly (and probably surprisingly to Chris if he stopped to think about it), he did not complain of cramping until bedtime. At that point, he received the new gas medicine and appeared to be falling asleep.

Chris did get his Benedryl though, not because of itchiness, but because he received a platelet transfusion and he always receives Benedryl and Tylenol before transfusions since he sometimes gets reactions to the transfusions.

He remained alert for most of the day, but sometimes grew a little agitated. The day passed by taking occasional walks around the floor, a long visit to the playroom during which he remained on the computer for about an hour, playing Pokemon with Mom and visiting with Uncle Brian, who came by for a visit. Chris also spoke briefly with our friend, Les (who has been kindly taking good care of Genie while we've been away) as well as Grandma and Grandpa.

Although he was not particularly happy about hearing the news, Chris took the news that Mom has to return to Tampa tomorrow better than we had expected. Maybe it helped that Mom said that, this way, she can trade out movies, books and games that he's had up here for a month for others that he has at home.

Joke of the day -- (Thanks Grandpa!) Why did the baseball player get arrested? He stole second base.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, November 28, 2004 2:17 AM CST

Late Entry from Saturday, November 27, 2004:

Hi Everybuddy!

Once again, Chris remain inpatient at Memorial Sloan-Kettering Cancer Center. Although yesterday Chris' bilirubin started to decrease slightly, it increased again today to a new personal high of 45, which is not the kind of record he is supposed to be setting. Needless to say, he remains yellow.

At least Chris' sodium level is coming up closer to the normal range. He will probably have to remain on the high sodium/restricted fluid diet throughout the rest of the weekend before addressing whether his body is able to maintain an appropriate level on its own. Right now, the fluid level is so restricted that Chris really can't drink enough throughout the day to make his mouth and throat feel completely satisfied, although it is certainly much better than being "NPO." Part of his fluid intake requirements are being used by the IV delivery of certain elements, such as salts, to maintain Chris' electrolytes. One option discussed by us and Chris' nurse was whether we can reduce the IV fluids and provide the salts through pills instead. For example, right now, Chris is taking salt pills to increase his sodium levels, and typically at home he takes potassium by mouth. We're now waiting to hear whether the doctors think that this might be ok to do. If so, then Chris would be able to drink more since there would be less fluid being infused through the IV system. One reason that it might not be medically sound is if it makes a difference in terms of how the salts are processed through the liver.

We're all trying to be as easy on Chris' liver as possible since no one knows what exactly is going on. The surgeon said today that, given the length of time that has passed since the surgery (Monday will be three weeks) and the fact that there doesn't seem to be any duct blockages or other "trauma-like" damage, he now is beginning to suspect that there may be some part of Chris' liver that may be failing. Thus, Chris remains a candidate for a CT-assisted needle biopsy of his liver early next week (Monday or Tuesday). The surgeon is also consulting with the hospital's liver experts for comparison of what happens with adults who undergo the kind of surgery that Chris underwent. The surgeon also wants another ultrasound done of Chris' belly, which may provide information on the liver situation, but also the fluid buildup that seems to be in progress in Chris' belly again. While Chris is asleep for the biopsy, his belly will probably be "tapped" again, and this time a drain may be put into place to help keep those fluid levels from getting too high.

It's frustrating, of course, to not understand what the source of the problem may be because it cannot be corrected until it is known. The bilirubin, fluid buildup and electrolyte issues may all be related, and once diagnosed, perhaps can be simultaneously corrected. The bilirubin is high enough to be responsible for Chris' itchiness, as it leaches out through his skin. However, the occasional morphine may be adding to that problem. Chris complained less of stomach cramping today, and he only received one small dose of morphine during the day. He complains of itchiness about every 4 hours, which is when his Benedryl wears off. So, he wants more Benedryl. The current plan seems to be alternating Benedryl with Vistaryl (a similar drug), but the Vistaryl isn't quite as effective. The cramping really does seem to be gas related because he does not complain so much about it if he is up and about.

Chris went to the playroom a couple of times; one trip had him on the computer for about an hour, during which he read through the Pokemon webpages and when he read a few of his emails. Chris also spent a fair amount of time in bed, but sitting up "crisscross applesauce" for a long while as he and Mom learned more about how to play Pokemon by its official rules (Chris has goofed off with Pokemon cards before and traded them with some of his friends, but he never really played the game in accordance with its official rules. So, he and Mom worked on that for a long while. He especially wants to thank his friend, Dora, who kindly made a special trip to a special store to get a couple of particular packs of Pokemon cards). Chris also enjoyed a relatively long (for Chris, anyway) conversation with Grannylyn and Granddad, but he wasn't able to talk with Grandma and Grandpa when they called. He also got a smile when he received a couple more cards and a pair of suspenders (thanks Cathy!) in the mail. Chris' attitude was generally better today, although he did have a few moody moments. Dad quashed that tonight though when he declared that there was only one grouch allowed in a room at a time and Dad wanted to be "it" for tonight. Chris smiled weakly and got ready for bed.

Joke of the day -- Did you hear the story about the germs? Never mind, I don't want it spread all over.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, November 26, 2004 9:04 PM CST

Hi Everybuddy!

Chris' day was spent as most of his days have been spent over the course of the past month: inpatient again. There was not much news. Chris' bilirubin began a gentle downward turn, reducing from 41 to 39.5. It's not much of a change, but it is at least heading in the right direction again. In addition, Chris' sodium level climbed a bit, as a result of the salt tablets and the higher salt/lower fluid diet. Chris' belly did not measure any larger today than it did last night, but it does look swollen again, albeit not as much as before. Chris will probably have to continue this added salt diet for a few days in order to bring the electrolytes back into balance; he has already commented that he misses plain ice water. If things don't show significant improvement, Chris will likely undergo a CT-assisted needle biopsy of the liver early next week, perhaps Monday (it takes time to clear the calendars of those who participate, and prepare the CT suite for such a procedure, so it must be scheduled in advance).

Chris continued to deal with itchiness and periodic lower digestive tract cramping. Although morphine is still an option for Chris, a new drug, better suited for gas buildup, is being tried in order to deal with the cramping. The hope is that Chris' pain can be controlled by something other than morphine. No one seems to believe that the morphine is at the root of Chris' problems, but since it can cause problems of its own, there is no reason to keep him on that drug exclusively. Chris also felt very agitated and irritable for much of the day. He tried to keep up his spirits, but he sometimes overreacted to ordinary things going on around him, such as touching if he did not see it coming first or comments to the nurse that his line is "occluded" (Chris has been around hospitals and IV lines long enough to know that an occlusion is merely the stoppage of an infusion, typically caused by simple things like an air bubble in the line or the end of the medication running through the IV; it is usually fixed very quickly and without any pain).

In order to combat the boredom and in an effort to get him up out of bed for longer time periods, there is now a PlayStation 2 in Chris' room. There is only one in the playroom, so there can be competition and/or waits in order to play with it, so it is better at this point (particularly since none of the familiar young faces are inpatient right now with whom to play) to have Chris playing his video games for longer time periods. He still walks around the floor at least 4 times a day, and he's getting much stronger in that regard. While in the playroom, Chris was visited by his longtime playroom volunteer friend, Dora; he liked that, especially since she knows where Pokemon cards can be found in this town. In addition, Chris spoke very briefly with his friend, Greg, who is trying patiently to wait for Chris' eventual return home.

Joke of the day -- What did Robin Hood say when he was nearly hit at the archery competition? Whew, that was an arrow escape.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, November 25, 2004 9:26 PM CST

Hi Everybuddy!

Happy Thanksgiving to you all! We are very grateful for all of your support throughout the years, and really hope that you enjoyed your holiday.

Chris spent his day inpatient again, with no possibility of discharge within the immediate future. He is playing "stump the doctors" again since he cannot seem to remain stabilized. Chris' bilirubin climbed significantly since yesterday: from 29.4 all the way up to 41 (normal is below 1). Yet most of Chris' other blood, liver and kidney factors are at or very near their respective normal ranges. The bilirubin is high enough now that the medical staff is beginning to show some real concern, and they want us to be especially on the lookout for unusual sleepiness or inability to remain coherent, as well as itchiness and bleeding.

Chris was itchy again, but it was controlled by Benedryl. He continued to have periodic lower digestive tract cramping, which was controlled by occasional low doses of morphine. At some point this afternoon, Chris started complaining of "heart pain." Once again, everything appeared to be fine with his heart, but an EKG was ordered, "just in case." So, the bedside machine was brought to Chris' room, and he was connected to all of the probes. He patiently lay still, but it turned out that the battery for that particular machine had not been properly charged, so it would not print. Chris then had to go back to the nearest monitor, which was located in the Pediatric Observation Unit (POU); he got there by riding on the IV pole which was pushed by Dad. He was connected again, but because Chris was not registered as a POU patient, at first the computer did not "recognize" him. So, Chris had to be temporarily registered as a POU patient long enough to get the EKG done, but he returned immediately to his regular hospital room.

In addition, Chris' electrolytes are getting out-of-whack again, particularly the sodium. This evening, Chris began taking a salt tablet, in addition to sodium and other electrolytes being added to his IV fluid. He will be allowed only limited drinking tomorrow: only fluids that contain some salt, and he will have to eat foods that contain a lot of salt in them (does that sound like fries, or what?) Speaking of fluids, Chris' belly is being measured twice a day now, and it appears that it, along with his legs, are retaining fluid again. So, he received albumin, followed by a diuretic (lasix) in order to help him urinate as much of the fluid out as possible.

All was not forlorn for him today though. Chris received a few visitors: our friend, Barbara, and a friend who went through antibody treatment with Chris a few years ago, Simon, and his family. Simon and his family, who live in the area, traditionally come back to the hospital to volunteer for the Thanksgiving party. While the adults set up and decorated the outpatient playroom for the party, Simon brought his computer into Chris' room and played games. Simon did most of the playing since Chris had received Benedryl not long before their arrival and was a little on the drowsy side. Still, he stayed awake and watched Simon, especially at one particular point in the game. Later, when the feast was ready in the playroom, Chris and Simon walked slowly together (along with Mom, who had the IV pole) there, and sat and ate a delicious lunch together. Chris wanted ham today instead of the turkey. He ate it, along with some fruit, for his Thanksgiving meal. The volunteer serving the ham has known both Chris and Simon for a very long time; he heaped on the cherries and pineapples onto Chris' plate. Chris ate a decent amount, considering how he's been feeling lately, but didn't exactly overstuff himself. He was dealing with stomach cramps and wanted to return to his room just as soon as possible. Simon came with him, and after Chris' cramping settled down, Chris went back to watching Simon play his computer games. It was great to have someone his own age come visit Chris. Later in the afternoon, Chris, Mom and Dad played a game of Trivial Pursuit, Junior. Chris also spoke very briefly to both sets of grandparents today, but he's still able to carry on much of a conversation. Still, the "Happy Thanksgiving" greetings were able to be exchanged.

The bottom line with Chris is that the doctors still don't really understand what's going on with him. So many things appear to be normal. But the bilirubin took a dramatic upswing today (and remained unchanged when it was measured again this evening), and Chris seems to be losing some electrolytes and retaining fluids again. Some of his irritability is returning, but we're told that some of that could be related to his current condition and/or medication. The surgeon did not come by today, but we've received word that he is considering doing a needle biopsy of Chris' liver to see if he can get a clearer picture of what's happening. Apparently this kind of reaction is occasionally seen after a major liver surgery as a result of clamping off the major liver artery in order to prevent unnecessary bleeding. That's why we've been told that time will probably be the biggest factor in healing Chris. However, some of the medical folks are beginning to look a bit perplexed as to the length of time it has already taken, and as to why Chris' body cannot seem to get on top of this problem, even as it appears that virtually all systems are in good operational condition. Once again, we must see what tomorrow brings.

Joke of the day -- (thanks Uncle Tom!) -- What happened to the turkey whose feathers were all turned the wrong way? He was tickled to death.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, November 24, 2004 10:20 PM CST

Hi Everybuddy!

Chris spent a relatively quiet day around the hospital today. The rain did not deter Mom from delivering the smiley face balloons that our friend, Barbara, sent over with Chris in mind. Those of course bring a smile to Chris' face. Later, he received a couple more packages of smiley goodies from new friends and old. Thank you all so much!

There's really not a whole lot to report. Chris remained inpatient, primarily for observational purposes. He is still yellow, but the bilirubin is still slowly decreasing. It was at 29.4, down from 35 on Monday. Chris received a large red blood transfusion today (the equivalent of about 1 1/2 bags of blood), due in part to the blood loss during yesterday's procedure (maybe even for all of the various blood draws from lab tests). He received albumin yesterday. Chris' appetite was only fair today, but he continued to have a bit of a sweet tooth. He seems to walk around pretty well now, but still doesn't like to do it. The biggest threat to his walking is the possibility of tripping over his adult-sized hospital gown (the child size is too small, but the adult size is floor length on him). The lab result on the "tummy tap" fluid did not reveal any conclusive information, but all systems seem to be functioning fine but for the liver. The most likely scenario with Chris still seems to be that his liver is still trying to deal with its surgical "injury." So, Chris remains in a medical observation mode, especially given how he failed to improve over last weekend.

He passed most of his time with his teacher (who came for class, then later returned to have lunch with him and to read, and to say good-bye just before she left for the day), as well as watching movies. Chris got up to walk around at least 4 times today.

He periodically complained of lower abdominal stomach cramping, and received very low dose morphine for it. He also periodically complained of "itchiness." That was the internal pain-kind-of-itchiness, so he received Benedryl to help deal with that issue. The itchiness could be the result of the high bilirubin, but even though he is receiving very low doses, the morphine could be adding to it as well. Chris was made aware of the morphine complication, and he said that he will stop the morphine as soon as he doesn't have bad cramping because he doesn't like the itchiness either. He was also told that he needs to get up and walk around since at least part of the cramping could well be the result of a lot of stored up gas (his surgery was 16 days ago).

We are getting concerned that some 38 days have passed since the last time that Chris had any kind of broad-spectrum kind of attack against the neuroblastoma. Although the surgery successfully removed the greatest threat to Chris' life, we must assume (especially based on biopsy results that indicated some neuroblastoma on Chris' remaining left liver lobe) that there is still neuroblastoma inside him. So, we are interested in starting whatever we can to fight that, as soon as wel can. Whatever disease is in him right now has sanctuary because it appears that we cannot treat him until the bilirubin comes down to the normal range (under 1). Thus, we are very interested in doing what is necessary to heal Chris' liver and body as quickly as possible.

Joke of the day -- (thanks Greg!) -- How do you stuff a turkey? You take it out for all-you-can-eat pizza and ice cream!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, November 23, 2004 9:36 PM CST

Hi Everybuddy!

Chris was not allowed to eat or drink anything this morning in anticipation of having his "tummy tapped." Thus, he was extremely thirsty by late morning, and a bit cranky as a result. We had been told to expect the procedure to take place at around 2 p.m., but thankfully the surgeon was able to move it up to 12 noon. Chris was very eager to get it over with so that he could get some ice water to drink. In fact, rather than wait for a wheelchair, Chris was in such a hurry that he walked as quickly as he could, tethered to an IV pole, to the procedures room (located in a different section of the same floor).

He didn't have to wait there long. With a little assistance, Chris climbed up on the table and received his propofol, the "sleepy medicine (also used for his bone marrow aspirates)," and was down for the count in about 2 seconds. Mom then left the room and only had to wait for about 20 minutes before she could go in to see him, already awake and asking for the ice water (she had it with her as she entered the post-procedure room). While he was asleep, a needle and small tube were inserted into Chris abdomen, which was used to drain about 1 liter (think of half of a 2 liter bottle) of fluid from his belly. That's a lot of liquid from one guy's belly!

A few minutes after Mom went in to see Chris, the surgeon came in and explained the above. He also said that the fluid looked like it had a lot of bile in it, but that he needed to see what the lab says about the fluid because Chris' current condition (very yellow jaundice). We were hoping to hear something by late this afternoon or early evening, but no word yet. While Chris was asleep, the surgeon had the steri-strips removed from Chris' large surgical scar. Chris was relieved to have heard that since he was dreading having to wait for it to fall off. The lateral part of the scar is still covered by the new bandage, which is protecting today's suture, which closes the site of the abdominal drain. Chris still doesn't want to look at his belly though.

Although Chris is still yellow, his bilirubin level is dropping again, this time to about 27. Chris felt better after the "tummy tap." He drank and ate more than he has been able to do recently, although he's still not up to normal levels. Interestingly, his sweet tooth has kicked in. He rarely eats sweets, so the sugar craving was more obvious in him than it might be in other children. Chris has also been burping and passing a little bit of gas, so some of the built-up pressure is beginning to be relieved. He asked for a little bit of pain medication a couple of times today, primarily to relieve lower abdominal cramping. His request was granted, but a leading theory is that the pain he is feeling is probably trapped gas that still needs to work its way out, one way or another. Chris' belly is still appears somewhat bloated, but the swelling is down enough that his belly button is visible again. We'll see whether the swelling continues to reduce overnight or not.

Chris was not allowed to get up out of bed until after 7 p.m. in order to allow for some recovery from the "tummy tap." So, he laid around and watched movies while eating and drinking. He did get up and walk a complete lap of the hallway (completely under his own power tonight, although still in somewhat slower motion) this evening, pausing in the playroom to pick out the next set of movies to watch. In addition, his teacher did a good job of overcoming Chris' irritability this morning when she distracted him from his thirst-related woes by concentrating on schoolwork.

Later in the afternoon, Chris volunteered to be moved to a new room. That was because he was paired up with an adult (yes, Chris is in a pediatric ward, but sometimes there are adults who, because of the nature of their respective cancers, need to be treated by the pediatric physicians, so they are admitted on the pediatric floor for the convenience of the medical folks who understand their diseases better than those who treat primarily adults) who received so many visitors that the room was always noisy, crowded, and even the patient bathroom was being occupied by the visitors. Although the nurse tried to deal with the situation, there were so many visitors that she had to repeat herself often. Chris is now in a somewhat larger semiprivate room. Although he still has an adult as a roommate, this new roommate is much quieter and does not have the traffic flow of the previous roommate. It is a better situation for Chris (and probably for the previous roommate, too).

Joke of the day -- Why did the Pilgrims' pants always fall down? Because they wore their belt buckles on their hats.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, November 22, 2004 9:44 PM CST

Hi Everybuddy!

In keeping with Chris' theme ever since he left home nearly a month ago, plans have changed again for Chris. Looking as yellow as ever and feeling bloated to the point that burping can be difficult (which should never be a problem for 10 year old boys, particularly after a major abdominal surgery), Chris found himself inpatient again today at Memorial Sloan-Kettering Cancer Center. In spite of all of this, Chris was feeling a bit more cheerful (although still weak) than he has been recently, so there was no psychological hurdle to deal with in telling him this news.

The bottom line is that we don't know exactly what is going on inside Chris, but his surgeon (as do we) wants to see Chris more stabilized before he travels home. Early this afternoon, Chris underwent another CT scan which focused on Chris' liver and the abdominal area. It did not indicate any particular bowel or bile duct blockages, intestinal "kinks" or anything else of the sort. However, Chris' bilirubin has climbed back up to 35 (it should be under "1"), which is nearly back up to his highest level a few days post-surgery and is significantly higher than it should be. In addition, Chris' magnesium and potassium levels have dropped as well, so his electrolytes need to be stabilized. Then there is the usual platelet issue; it was at 24 today, so he'll be receiving a platelet transfusion overnight.

Chris will not be allowed to have anything to eat or drink after midnight because the surgeon intends to do a "tummy tap" at some point tomorrow at a time yet to be determined. It will probably happen around 12 noon or 1 p.m, but is dependent upon his surgical schedule tomorrow. Chris' abdomen has quite a bit of fluid in it that is not supposed to be there. The "tummy tap" will allow for drainage of that fluid, which hopefully will provide some relief to Chris. But the surgeon is very interested to see what is in that accumulated fluid. If there is bile in there, it would apparently explain the continuing jaundice and it's something with which the surgeon can deal. So, we'll just have to wait and see what's in Chris' tummy tomorrow. Chris' only concern about the procedure is that he not be awake for it. His wish will be granted since the surgeon intends to perform it with Chris in a semiconscious state. As far as Chris is concerned, that's close enough to being asleep.

Otherwise, Chris was able to play a video game a couple of times in the playroom, and he spoke briefly with both sets of grandparents. After each thing that he did today though, Chris needed to take a little rest break. The powdered medicine that he did not like was stopped today, much to Chris' relief. Although it is designed to help ease the processing of bile through the body, its adverse effects (namely contributing to abdominal gas) was outweighing the benefits, at least at the moment. In addition, the surgeon stopped all of the complementary therapies, but for the multivitamin, in order to keep things easy on the liver,
to not interfere with the medications that he may prescribe for Chris, and to help him figure out what's going on inside him.

Until at least after results are obtained from tomorrow's "tummy tap," we don't know how long Chris will be in-patient this time. The important thing is that we get to the bottom of whatever his problem is so that it can be fixed and Chris can get well. So, we continue to watch, wait and pray for Chris' full recovery.

Joke of the day -- Why did the Pilgrim shoot the turkey? Because he was in a fowl mood.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds. We remember one of Chris' best friends, Allie, today in a special way; she would have been 12 years old today.

Love,

Chris, Alison and Pat

Sunday, November 21, 2004 8:50 PM CST

Hi Everybuddy!

Unlike yesterday, Chris didn't get to sleep in too late this morning. He had to go to church with Mom, and before that, he had to take his portfolio of medicines. He is still quite bloated and it's still difficult for Chris to wear pants. Mom "drove" him over to the church in faithful "Ronald" (his stroller) so it wasn't too hard on him getting there. Chris is still rather weak, so it was difficult for Chris to do much more than sit and kneel.

Chris and Mom returned to the RMH just as Dad was finishing packing one of the first of many bags for our trip home. After a brief stay in the room so that Chris could rest for a bit, as well as a quick call to his former New York teacher, we headed out to meet her for lunch. Lunch was a pleasant outing, although frankly Chris was a bit subdued. That in turn caused the usually very warm teacher/student interaction of old to be equally subdued. She's used to that response at times as she was his teacher during numerous painful cycles of antibody treatment.

Right after lunch, the parties went their separate ways; we headed toward "downtown" to go see the "Spongebob Squarepants" movie, with Chris traveling in "Ronald" style again. Chris liked it, Mom thought that it was OK and Dad fell asleep (that's surprising since he normally likes Spongebob). After the movie, we took a roundabout way back the RMH shopping at various places as we searched for a pair of suspenders to help Chris keep his pants in order. Hopefully he'll only have this need for a few days, but one never knows.

Not long after our return to the RMH, Uncle Brian arrived. After a short stay in our room (during which Chris dozed a bit), we headed off to the nearby Chinese restaurant for dinner. Chris ate even slower than usual but picked up the pace a bit after a brief visit to the bathroom. Unlike our last visit to this restaurant a few nights ago, Chris didn't feel inspired to write a new song. After dinner, we all headed back to the RMH, and shortly after that, Uncle Brian had to make the long trip back to Staten Island. Chris meanwhile started the long, slow process of showering, taking his medicines and otherwise getting ready for bed. Although he can do a few things, it takes him a long time to do them and it tires him quickly.

Joke of the day -- What sound does a space turkey make? Hubble, hubble, hubble!!!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, November 20, 2004 9:26 PM CST

Hi Everybuddy!

Chris slept in late this morning, well at least until it was time to take his medicines. Dad then got him dressed (it's difficult for Chris to wear pants because he is still very bloated around his waist, belly and hips, both in his front and back, so he pulls them up, then covers the unzipped fly with an untucked t-shirt) and going, then we all went down to the RMH's Saturday morning breakfast. A very droopy Chris ate a half a bowl of Cheerios and watched the TV along with many of the other inhabitants of the RMH. Chris is still taking a powder prescription drug that must be mixed with a fluid; it tastes so poorly that Chris said that he'd rather drink contrast (another nasty tasting drink used to prepare for CT scans).

After a short time in the room, Chris and Mom went downstairs to the playroom while Dad cleaned our room. There, Chris had to readjust to the noise level of the playroom (it was no different from usual, but he seemed to be more sensitive to it this time). Then he and Mom played "Shrek 2" on the Playstation 2. Chris did his best to keep Mom out of trouble on the game, which took some doings. After a little while, they returned to our room, then all three of us headed out to the movies. It was a good way for Chris to feel like he's doing "normal" things and to get out a bit without overtaxing him right now. We went to see two movies back-to-back: "The Incredibles" and then "National Treasure." It was a bit of a walk to the theater so Chris rode in his trusty stroller, "Ronald." Both films were universally enjoyed. Chris even managed to stay awake during both movies, although he was getting tired of sitting upright by the end of the second film. The movies had plenty of excitement and humor.

After watching the films, we walked a few more blocks to Mom's favorite New York barbecue restaurant, where Chris usually gets some shrimp. On the way there, we stopped at an electronic game store, where Chris learned that a new gaming device will be released for sale beginning tomorrow. Due to the backlog, he will have to wait until we get back to Tampa before he can shop for one. At the restaurant, Chris noticed that the menu had changed but they still had a shrimp on the menu. He slowly made his way through five good sized shrimp. Chris did a good job of slowly walking a considerable flight of stairs down the restaurant's restrooms. His muscles are still weaker than they usually are, so he needs a handrail and someone to "spot" or hold his other hand especially when on the staircase.

Unfortunately, it was raining by the time we were ready to leave the restaurant. Fortunately Dad's coat has two layers, so Chris was zipped in the outer layer and given an umbrella as he sat for the 3 block walk "home" in "Ronald." That way he stayed warm and dry.

Once back at the room, Chris began working on taking his considerable portfolio of medicines. He seems to be always taking the powdered one that he has to take mixed in some sort of drink; it's required three times per day.

As promised yesterday, the words for Chris' newest song "The Yellow Blues" are attached below. It follows a blues rhythm, so just imagine of the Blues Brothers singing it.

Joke of the day -- What would you get if you crossed a turkey with an evil spirit? A poultrygeist.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

The Yellow Blues

By Chris Becker

My name is Chris whatever,
and as you can plainly see,
I have a tale that�s worth telling,
about what�s happened to me.
It�s all about how I got a case
of the Yellow Blues.

I went to the doctor,
to see what he could do.
�I can cut your liver
up right in two.
but then you might get a case
of the Yellow Blues.�

I woke up after surg'ry,
feeling a little bit sadder.
The doctor said, �I got half of your liver,
as well as your gall bladder.
You�ve now got a bad case
of the Yellow Blues.�

Yes, I woke up
feeling my stomach itchin�.
I lifted my shirt,
and saw all of his stitchin�.
Oh, I knew I had a bad case
of those Yellow Blues.

The doctor had me in stitches,
But I couldn�t laugh.
In order to get better,
He said I had to pass gas.
Then I knew I had a bad case
of the Yellow Blues.

Right after I awoke,
I went on an ambulance ride,
Me and Dad in the back,
and then down I was tied.
And I had a really bad case
of those Yellow Blues.

In a maze of tubes and wires,
of those I�m no fan.
I thought someone had conspired
with the Spider-man.
Oh. I had a terrible case
of those Yellow Blues.

Once I awoke,
I had to pee.
But Mom said, "don�t worry,
just look down and see."
That�s when I knew I had a bad case,
of those Yellow Blues.

After several days,
I spoke with the surgical fellow.
She said, �You�re back to your old ways,
But you look kind of yellow.�
Yes, I had a really bad case
of the Yellow Blues.

The doctor told me,
That my liver had shrank.
Then he talked to my dad,
about some armored tank.
And I knew that I had terrible case
of those Yellow Blues.

He has some nurses,
who are as good as can be.
They do what he says,
to take good care of me.
But in spite of them,
I still got the Yellow Blues

Finally the day came
to go on back home.
The doc wore a coat and tie
and told me to roam.
Yes, he said �go� with my bad, bad case
of the Yellow Blues.

Friday, November 19, 2004 10:36 PM CST

Hi Everybuddy!

After being left reasonably alone by the hospital staff throughout the night, Chris awoke and ate a decent breakfast of cereal and two sausages. He enjoyed the sausages for a little while, but they came back up after a bit; perhaps his belly wasn't quite ready for sausage yet.

Chris' teacher arrived and started in on the schoolwork. Only about ten minutes into it, she was interrupted by Chris' surgeon, who came in to see how Chris was doing. The doctor told Chris that he'd be able to be discharged today. That doctor was treated to the biggest and brightest smile that Chris has had since the surgery. The rest of Chris' schoolwork seemed to fly right by.

Just as the teacher was finishing, Chris was visited by his long time friend, Dora. Mom got to meet her, too, this time. Dora and Chris went ahead to the playroom, where Chris got back onto the computer to play a Harry Potter game. While he was there, our other friend, Barbara, also came to visit. Although both Barbara and Dora have been Chris fans for a long time, they had never met each other before. Eventually, Chris got tired and returned to his room to await lunch and his discharge orders.

It took a while for the discharge orders and prescriptions. The nurse came to de-access Chris' mediport, and a few minutes later, one of the residents came to remove the bandage over the site where Chris' chest tube had been. All of that looked fine, but Chris was very anxious over all of that activity. That is so unlike him normally. Later, Chris looked like he was going to cry and he told Mom that he was afraid to take a shower, even though the doctors have told him that it's ok now. The long line of steri-strips that cover the surgical wound scares Chris when he thinks about them having to come off. His previous surgeries took place long enough ago that he doesn't really remember what it feels like for those to come off, so he's nervous about it.

After lunch, Chris rested a bit in bed, after changing into street clothes. He is still swollen around the midsection of his body, so he cannot button or zip his pants. He just wore his t-shirt and jacket outside and over the open fly, then accepted a ride in his trusty old reliable stroller, "Ronald," which Dad brought back to the hospital from our RMH room. The other nice thing about "Ronald" is that it can be loaded with some of the other things that were also coming with us back to the RMH.

Chris was very happy to be out of the hospital, and it was his intent to go with the other kids on a RMH outing tonight to see "The Incredibles." First, though, he wanted to rest, so he watched TV and eventually fell asleep. When he woke up about an hour later, Chris said that he felt hot. Mom took his temperature, and sure enough, he was sporting a low fever that, so far, has been low enough to not require a return trip to the hospital. We're keeping an eye on it all night though. Chris said that he did not feel sick like he normally does when he gets a fever, but he remains feeling weak. He wisely decided not to go to the movie tonight. If he's up to it, then we'll see it tomorrow.

This has been a difficult hospitalization for Chris, who normally enjoys himself. Even at the RMH, Chris did not immediately spring back into his usually playful self. He grudgingly took his afternoon medicines, and he did not want to go to dinner. Mom wanted him up as much as possible, so she made him sit in a chair while he took his medicines, especially the bland powder that gets mixed into Gatorade -- he hates it, but can't drink it too fast because it makes him nauseated. So, he has to sit up for a while in order to drink it.

Then Mom wanted Chris to sit up through dinner (he had suggested that we bring in food, but that would have allowed him to lay down while waiting for the food to arrive). Dad agreed with Mom, and all three of us walked slowly about a half of a block and crossed the street to the Chinese restaurant. There, Mom and Chris shared a chicken and rice dish. Chris again looked anxious and said that he was worried about the fact that he still has no appetite. Mom told him that the appetite doesn't matter because it will come naturally as soon as his belly fully awakens and he gets stronger. Then Chris again shared his real fear: taking a shower and what to do about the steri-strips on his belly.

Eventually Chris relaxed enough to eat about half of what he normally does, but he looked like he was enjoying it too. At the end of dinner, Chris was feeling good enough to start joking around with Dad. One thing led to another, and all of a sudden, Chris was laughing and feeling inspiration for lyrics about this most recent hospitalization. He acknowledged that he felt blue a lot this time. Mom quipped about Chris really being yellow. Dad came up with bluesy kind of music, and "The Yellow Blues" began taking shape. Chris has a large part of it put together already; perhaps by tomorrow we might be able to share it with you (he wanted to stop on it as he started getting sleepy because he didn't want to have any bad dreams about it -- the song is actually pretty cute, but Chris is still too close to the situation to want to risk dreaming about it tonight).

Chris did take his shower tonight. He wanted Mom to remain in the bathroom while he did so, "just in case." As it turned out, Chris did feel better after taking a "real" shower. While he was wet, he asked Mom to get ready to take the bandages from him -- apparently he had misunderstood about the steri-strips falling off naturally all by themselves. It was a good thing that Mom was in the bathroom at the time because Chris was going to peel them off, one by one. She stopped him from doing so, and he looked somewhat relieved; that must have been the underlying source of his fear of taking a shower.

In any event, Chris went to bed later than usual (well, usual for home, not hospital) because of the medicines, etc. He still had to drink an other big cup of Gatorade with the bland powder, as well as a new prescription of something to help his body deal with the bile while his liver continues to heal. That new medicine's label said for Chris to take 1 1/2 capsules of the stuff per day. Well, it's difficult to accurately split a capsule in two, so Mom called the hospital for further instructions. It took a while, but eventually she walked back over there to get the leftovers of the liquid suspension that Chris had been taking at the hospital; that suspension is what we will use (at least until we get home) for the "1/2 capsule." Strange that the pharmacy didn't catch that practical problem . . .. So, Chris took one capsule and the appropriate amount of the suspension, per the hospital's recommendation, in order to get the correct dosage.

We are waiting for travel information from Corporate Angels Network now in terms of when we're coming home. It looks like we'll be in New York at least through the weekend. That's probably a good thing because it allows Chris to "decompress" and normalize his life (and hopefully avoid a higher fever), and allows Mom and Dad to get things in order before having to catch a plane. We are very grateful to all of you for all of the support we have received: tangible and prayerful. Obviously, it has been very successful.

Joke of the day -- Doctor, I snore so loudly that I keep myself up. What can I do? "Sleep in another room."

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, November 18, 2004 9:12 PM CST

Hi Everybuddy!

Chris' strength is growing to the point that he was even unhooked from all of his tubes, except for when he received his platelet transfusion today. He is improving in many ways: the swelling is still present in the midsection but is significantly reduced (especially in the groin area), he has greater mobility and even his stomach cramps are now coinciding better with imminent bowel movements. He is still quite yellow but his bilirubin is slowly declining. Despite all of these good signs, Chris still seems to be somewhat depressed. It didn't help when he found out that he was going to have to be subjected to another one of those long Nuclear Medicine scans. He really didn't want to do that again. Later, the surgeon came by for a visit and told Chris that he was going to cancel that scan. He asked Chris for a smile; he tried but it was a very weak smile.

After briefly considering whether the occasional morphine doses might be the cause (it was decided that those doses were probably too small and not frequent enough to be the immediate cause, although it is possible that they have contributed to the blues), the medical consensus seems to be that Chris has an ailment that he rarely gets: "hospitalitis." The best cure: get out of the hospital. Chris was told today that when he is allowed to leave is up to him. The requirements are that he not destabilize in any way, that he keeps getting up out of bed and moves around, and that he eat better than he has been doing. That information did not bring a smile to his face though; he's got a bad case of "hospitalitis." But he did dutifully eat pretty close to a normal portion of cereal for breakfast, ham for lunch, and when Dad brought in a slice of pizza for dinner, Chris actually said that he was hungry. He ate nearly the entire slice (New York slices are about the size of two slices back home). Chris is cooperating with taking his medicine. His biggest obstacle is getting out for his "walkabouts." He prefers to do his schoolwork in his bed (although to be fair, the teacher offered to take Chris to the reading room extension off the playroom, but Chris did not want to go there because the Wiggles were visiting in there at the time and, no offense to the Wiggles or their fans, but they are for a somewhat younger age group) to walking. He does it though, but with a frown.

On three of his walks, Chris stopped in the playroom, twice just to pick out new movies to watch, and once because Mom told him to stay and play. He got on the computer and played a Harry Potter game, then when the Playstation 2 became free, he moved over there for a little while. Despite his grumbling, he does improve while he's in the playroom, and that attitude carries over for a few hours later. As he and Mom returned from the playroom back to his bed for a little rest, our friend Barbara arrived for a little visit. They had a nice chat about scary things like the inside of Chris' closet. Barbara figured out why this past Tuesday was so tough, what with all of the scans and tests, etc. It was because it was Tuesday. Chris can't run and hide from "Terrible Tuesday." Although it was different from the kind of "Terrible Tuesday" that Chris usually has back at home, Tuesdays just seem to be his most chaotic days of the week.

Chris' roommate was able to check out yesterday evening before dinner. For some reason, that side of the room remained uncleaned throughout the evening, that is until nearly midnight. That was when a cleaning team burst into the room with the subtlety of a stun grenade. Without regard to the patient on the other side of the curtain (i.e., Chris), they flipped on the bright lights and moved with a clatter as the cleaned the other half of the room. They did not apologize until just before leaving. When they entered the room, Chris was genuinely scared. He told Dad later in the early morning (during a bathroom break) that he had a nightmare about someone crashing into his room. Such incidents like this only undermine the good works of the medical team. That just added to the severity of the "hospitalitis." Chris needs to go home where he only needs to worry about whether Genie is going to jump on him when it's time to wake up. So, with any luck, Chris may be discharged sometime tomorrow. We await further instructions.

Oh yeah, I forgot to mention that we received a copy of the Surgical Pathology Report and the Bone Marrow Report. The basic results are that the entire right and caudate lobes of the liver was taken, along with a tumor that measured 11 x 10 x 8 cm (about the size of a brick, I think). In addition, although we did not know it at the time, Chris' gallbladder was also removed. The surgeon today confirmed it and said that it was necessary and standard method of performing this kind of surgery. Also, the bone marrow report indicates that there is no evidence of neuroblastoma there, but that the marrow is operating at about 40% efficiency.

Joke of the day -- (Thanks Greg) -- Why are geese terrible drivers? Because they always honk.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, November 17, 2004 10:18 PM CST

Hi Everybuddy!

Last night was pretty exciting. It started out peacefully enough when Mom left for the evening (about 9:30 p.m.). Chris slept soundly, and but for waking up a few times to go to the bathroom, things were fine. His last such excursion was at 3:23 a.m., and since he was awake anyway, Dad checked that all was quiet at the nurse's station. Only about thirty minutes later though, Chris' nurse came into Chris' room and flicked on the lights as she told Dad that the room was needed for an emergency on the ward. Not one minute after that, two nurses showed up from the ward to whisk Chris away in a wheelchair, with Dad following with some of the bags. Once at the new regular hospital room, Dad lifted Chris into his new bed, then went back to the Pediatric Observation Unit (POU) room, to retrieve some more of our bags; Dad had the room mostly packed, having anticipated a move to a regular room in the near future. He got back to the new room just as the nurse was drawing a blood sample and taking Chris' vital signs. About fifty minutes later, the patient in crisis was still in his room where the staff needed to be working on him, and Chris' POU room still had not been cleaned for the new occupant. In other words, there did not appear to be a reason for the nurses to have created a crisis event at 4 a.m. for Chris; even if he had to move at that hour, there was time for both the nurses (and Dad, had they given him some advance warning) to manage and work the situation in an orderly fashion.

Since there was some confusion about Chris going from a monitored environment (in the POU) to an unmonitored environment (a regular hospital room that did not have monitoring equipment), Dad kept an eye on Chris while he slept; remember last night Chris needed supplemental oxygen blowing in his face while he slept. The chaotic manner in which Chris' care was transferred from the POU to the regular hospital room did not allow for the confusion to be cleared for a couple of hours. Fortunately, Chris is doing much better, so that turned out not to be an issue. Chris awoke needing to go to the bathroom at about 7:15 a.m. Shortly after that, Dad took a reluctant Chris on his first walk of the day. They headed to the playroom and signed out two movies. Dad took Chris the long way around back to his new room, so he walked about 100 meters. On the way back, the guys bumped into an anxious looking surgery fellow, who came to give him her morning exam. She thought that he had been somewhere. She smiled when she saw Chris walking so well and followed the guys back into the room. Dad then ordered breakfast for Chris. Chris' new day shift nurse checked in with Dad (she's good). Dad asked if she knew of any tests or scan that would preclude Chris from eating breakfast. Her answer was no. About twenty minutes later, just as Chris' food tray arrived, the nurse came into the room. While she was speaking with Dad, a patient escort came to the room to take Chris for yet another X-ray that neither the nurse nor Dad knew about. Chris just shook his head at Dad, got in the wheelchair, and the guys left a little perturbed nurse behind. Since the X-ray was a repeat of the one performed yesterday, Chris knew what to do before being told. The idea is to see what's going on with the fluid in his chest cavity. (Later, we heard that it seems better, there is no pneumonia, and no air got into the chest cavity when the chest tube was removed.)

Once back at the room, the guys relaxed a bit, watching a movie while Chris ate a pretty decent sized breakfast of 3/4 of a peanut butter and jelly sandwich. Mom joined them, and not much later, the neuroblastoma team social worker came in, too. She's a saint. She told Chris about how she can't keep up with him. She kept trying to visit him, but every time she tried to do so, he was either undergoing a test or moving around between rooms and even hospitals. While that conversation was going on, Chris' teacher stopped by to tell Chris when she could have class with him today. She also offered to bring him a pizza slice from an "outside source" (does York's Pizza sound familiar?), but Chris was cramping at the time and wasn't too responsive to that idea. The pizza class was postponed until Friday. The teacher did return later in the day and they worked on schoolwork together. Right at the end of that, Chris started cramping again and getting "itchy legs" (it's a type pain effect on the nerves, so pain medications do help). He settled down with a low dose of morphine. In fact, Mom let him take a nap, given how his early morning went. Chris missed phone calls from people checking in on how he's doing, notably from Grannylyn and Granddad and from his beloved but now retired teacher.

Two other times during the day, Chris walked to the playroom, too, and either played on the Playstation 2 or the computer for a little while. He also checked out a couple more movies. He is getting stronger, but he's still got a ways to go before getting back to his pre-surgical strength level. Chris is now able to get into bed by climbing into it then flopping over into the most comfortable position for him, but he needs help in sitting upright when laying down, as well as swinging his legs over and getting ready to "scootch" out of bed. He can also generally walk by himself without holding onto anything or anyone, but he's not secure enough to walk without having someone ready to catch him, should he get suddenly get weak. He's also not walking completely erect yet. Food and exercise should help with that, as well as the gastric troubles and the continued recovery of his lungs. Chris also seems to be a slightly lighter shade of yellow, including in his eyes, so the perhaps he is also beginning to recover a bit from the jaundice.

Because he was in-patient, Chris was not able to attend the big talent show put on at the Ronald McDonald House. Had he been up to it, Chris wanted to perform a couple of the songs that he has written over the years. He asked Mom to do it for him, and specifically asked that she read the "'Twas the Night Before Christmas" and the "Twelve Days of Christmas," both written Chris Becker-style (they're both included below). He wrote these a year or two ago. Although it's not quite the right season, he wanted the other kids to have the words so they can take it with them when they each return to their respective homes. So, Dad made sure there were enough copies to be distributed, but Dad stayed at the hospital while Mom returned to the RMH to "stand in" for Chris. Later, one of the other mothers asked Mom how old Chris was. When she heard, she couldn't believe that a then 8 or 9 year old could have done written this and made it rhyme so well, but it's true -- he did. It was a very nice show; Chris would have liked the juggling and magic acts, as well as the other kids singing. Mom wasn't the only adult out there though. This event was emcee'd by a comedian and catered by a wonderful Italian restaurant, and this being New York, some of its employees are very talented too. One woman's voice sounded a lot like Bonnie Raitt. Another gentleman had an incredible stage presence as he sang "Oh, What a Beautiful Morning," from the musical, "Oklahoma," and as an encore, he sang and danced just like Elvis Presley with "Blue Suede Shoes." It turned out that he has toured professionally throughout about half of the U.S. The youngest of the RMH residents here were always welcome up on stage to dance with those who were performing. It was a lovely show, and Mom will tell Chris all about it tomorrow.

Oh, there are more new pictures on the website of Chris during his post-surgery return to MSKCC. This time Chris not only looked like, but was with, Spongebob Squarepants.

Joke of the day -- What did the witch put in her hair? Scare spray.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

www2.caringbridge.org/fl/chrisbecker

The Night Before Christmas

by Chris Becker

�Twas the night before Christmas and all through the ward
Not a pump was beeping and all the patients were bored.
As my roommate and I settled down for some sleep
The door opened; into the room, a nurse did creep.
The IV�s were hung on the poles with great care
In the hopes that St. Nicholas would free us from there.
The windows were shut, the blinds were all drawn
It was so boring that I just had to yawn.

Soon there arose such a really loud clatter
that I sat up in bed to see what�s the matter.
and who, to my surprise, at my room should appear
but the child life therapist with all her play gear.
We started to play, we started to laugh
And all of our boredom was cut right in half.

Soon nurses arrived to tell us �be quiet!�
and before too long they joined in on the riot.
The doctor came in to put all in order
But she stayed, played, and we all adored her.
The social worker dropped in because of the noise
And said that the medical staff must maintain their poise.

Then there came a soft noise to all of our ears
Like the sound of a sleigh with eight tiny reindeers.
Everyone hid in the room really fast
And in came St. Nicholas with his visitor�s pass.
He carried a lot, a big bag of toys
And he put them on beds of all girls and boys
He left and left big stockings of sweets
But the dietitian came in and said, �Those you mustn�t eat.�

But we ate all the sweets, though it wasn�t right
And everyone said, �Merry Christmas to all and to all a good night.�
We�re hoping tomorrow there will still be great cheer
When housekeeping comes as a mess is still here.

Then the charge nurse switched off the light.

Twelve Days of Christmas

by Chris Becker

On the first day of Christmas my nurse gave to me.
One tube of Emla cream

On the second day of Christmas my nurse gave to me.
Two IV�s

On the third day of Christmas my nurse gave to me.
Three barf bins

On the fourth day of Christmas my nurse gave to me.
Four latex gloves

On the fifth day of Christmas my nurse gave to me.
Five pumps that ding.

On the sixth day of Christmas my nurse gave to me.
Six grape Popsicles

On the seventh day of Christmas my nurse gave to me.
Seven ET fingers

On the eighth day of Christmas my nurse gave to me.
Eight CBC�s

On the ninth day of Christmas my nurse gave to me.
Nine red blood bands

On the tenth day of Christmas my nurse gave to me.
Ten plastic urinals

On the eleventh day of Christmas my nurse gave to me.
Eleven hospital dinners

On the twelfth day of Christmas my nurse gave to me.
Twelve student doctors

Tuesday November 16, 2004

Hi Everybuddy!

Chris took some significant steps toward continued improvement (whether he wanted to or not), and spent a fair part of the day getting scanned. Overall, he is doing much better but there is still room for improvement. His attitude in some ways is better but his morale is a little sagging. We believe that is in the process of changing though for the better.

Once settled in the new room at Memorial Sloan-Kettering's Cancer Center's Pediatric Observation Unit (POU) after yesterday's move, it took a while to get Chris ready for bed and through taking all of his medicines, but it was worth all of the effort; he and Dad actually got some rest during the night (not always possible during a hospital stay). Chris did require one pain medication just before bed because of a pain center above his incision on his right side.

Dad wanted Chris to realize that he really is indeed getting better, so he woke him up and get him going at around 7:30 a.m. Dad learned then that Chris had to undergo another two hour scan, beginning at about 9:00 a.m. Chris was "NPO," meaning that he could have no food or water. The guys went on a walkabout of about fifty meters (nearly three quarters of the way to the in-patient playroom). Chris was not overjoyed with having to make the trek. Not too long after the walkabout, the patient escort came to take Chris to the Nuclear Medicine Department.

Arriving there was like homecoming for Chris. He even got his "special" technician, who has been by Chris' side during scan for over four years. She was quite happy to see him, as was he of seeing her (well, as much as he could, under the circumstances). Mom linked up with the guys as they were waiting to get called into the scanning room. She picked up where Dad left off in reading aloud the 5th Harry Potter book. Especially because he had undergone this same type scan a few days ago at New York Presbyterian Hospital, Chris knew that this was a very long scan, so he wasn't very happy about being there. The scan itself went well. It took over an hour, during which Chris had to remain perfectly still. About halfway through it, Chris began to cry silently before quieting himself. Afterwards, Chris remained still, but got antsy again about 10 minutes before it was completed. Finally, he was allowed to move his arms and squirm just a bit (there's not much room since the scanner bed is really only a padded metal "board"). Then it was announced that four more scans were also needed, but each of those only took five minute to complete, and Chris was allowed to move a little bit in-between those scans. After a few more tears, Chris shrugged it off and laid still for the additional thirty minutes (counting "squirm time"). After the prerequisite wait for the radiologist to review the data and confirm that the quality was good enough, he and the technician came back into the scanning room and told Chris that he'd would have to have another partial re-scan at about 5 p.m. Gulp. Even though we'd never meet this radiologist before, he knew of Chris and asked if he was the one who wrote the song, "Men in White." We were all surprised. The words for the song are below:

Men in White (of the MIBG)

By Chris Becker � (very loosely sung to the theme song of "Men in Black (MIB)")

The Refrain

Here Come the Men in White

Men and Women, they're quite a sight

Guaranteed to give you quite a fright

But they're going to treat you right.

They give you a nuclear injection

For a thorough inspection

Helping in your cancer detection

Take Lugol�s solution

To fight thyroid pollution

Or SSKI is their suggestion

It is for your own protection

All-in-all, its a good election

Refrain

Its just a little scan

but don't move your hands

It is sort of boring

And soon you'll be snoring

Maybe a few words is all you need

So maybe Mom or Dad to you might read

At the end you'll hear a little beep

That will wake you from your deep sleep.

Refrain

The scanner goes all around

So that all the cancer can be found

But don't get in a hizzy

Because you won't get dizzy

Its radioactive and could make you glow

But its not guaranteed to help you grow.

They don't have no neutralizer

But you can have an anestizer

Refrain

There's a doc in back

but she sure ain�t no hack

She looks for all that's white

to see what's wrong or right.

She reads the films and writes the reports

That causes the patients to do their last resort

Read her reports and you'll get cross-eyed

Try to say them and you'll be tongue-tied

Refrain

Here comes the MIBG,

Here come the Men in White

Once back at the room at around noon, Chris was finally allowed to eat, but not until after a little excitement. Just after Dad lifted Chris into bed, Chris' suction tube somehow "unscrewed" from his chest tube. The nurses were quite anxious, but the surgical team got them squared away; it turned out not to be too bad of an event. A portable X-ray machine was brought to Chris' bed in order to verify that no internal damage was done as a result of the tube dislodgment. Well, back to finally eating. Almost toward the end of lunch, the hospital's chaplain came to visit Chris. He also brought Holy Communion to Chris in bed. Well, almost . . .. No disrespect intended, but Chris didn't know the chaplain was coming, and Chris really had to take a bathroom break. The priest was kind enough to wait.

While doing his thing, Chris' teacher also arrived. So once Chris was finished and back in bed, he rapidly moved through Holy Communion, a farewell to the priest and then on to classwork. A watered, fed and "bathroomed" Chris was in a pretty good mood then and ready for a challenge, which his teacher was ably willing to supply. She, too, was interrupted though, but this time for medical reasons. After only just beginning with Chris, the doctor arrived to remove the chest tube from Chris. It merely required snipping two sutures and pulling out the tube from the interior of his chest. He did not receive a sedative because it should have only caused a tugging sensation as opposed to real pain. Chris has had his fill of medical procedures and was in no mood for this. Chris was anxious as he watched this procedure. The snipping part went well, but the tube was longer than he anticipated; he did feel some discomfort and "gross out" feelings as it occurred, so he started to tremble and hyperventilate a bit. He got that under control pretty quickly so it did not become an issue. His teacher, who had stepped out of the room in order to make a copy of some reading homework, returned as the assisting nurse was trying to get Chris to calm down by asking him about what he was reading with his teacher. The teacher picked up on this clue right away. After a little quip about Chris having forgotten already, those two got right back down to business to the point of finishing nearly all of the homework that Chris owed one of his Florida teachers -- all done in a little under an hour. It's amazing what can be done when the teacher to student ratio is one-to-one. On top of that, his teacher also helped Chris to remember to drink his "must drink" medication, which helps reduce the impact of bile processing through Chris' liver. She's pretty flexible and has been looking for opportunities to help out. She certainly did well today.

Afterwards, Mom insisted that Chris go to the playroom. He didn't think it was going to be worth the effort of walking the length of a couple of corridors, but Mom wanted him up out of bed in the hopes of engaging him in anything to get him back closer to his regular routine. Chris' walking was in fact, much improved, particularly as the day progressed. He still tires easily, but his physical strength is beginning to return. Chris made the walk down there, where he plopped in front of a computer. At first he played an electronic pinball game just to "do something" as opposed to truly doing it because that's what he wanted to do. Nonetheless, he managed to be the second highest scorer amongst those who have played the game before him, so he was able to enter his name into the computer's record of top five scorers. Because his heart wasn't really in it, Chris tired of that game fairly quickly.

No rest for the weary though. His nurse swept into the playroom (otherwise empty at that time, but ordinarily medical folks are not allowed in there because it's a "safe zone" where the patients can relax without getting poked and prodded), and hurried him out of there. It turned out that the doctor who removed the chest tube had ordered another chest X-ray in order to make sure everything was ok there, but she did not tell Mom or the nurse about it. So, the X-ray technician had brought the portable X-ray machine to Chris' bed, but there was no Chris there. The nurse made such fanfare over getting Chris back to his room and ushered him so quickly that Chris did not have time to protest about having to walk again. Once the X-ray was done, Chris didn't think that the playroom (which, by the way, is very nice and comfortable), was worth the effort of getting there. Taking a cue from his nurse, Mom just got him up and going. Before too long, Chris was there, and back in front of the computer. This time, he got onto the Internet and visited one webpage that has cartoons that are at the 10 - 11 year old boy level of somewhat crude humor. After a few minutes of that, Chris began to relax and even laughed a little bit. Finally, he seemed to be genuinely tired, so Mom escorted him back to his bed, where he was able to relax a bit before heading back downstairs for the second visit to the Nuclear Medicine Department.

Before going there, though, Chris had to visit Radiology. The radiologist apparently was not satisfied with the quality of the first X-ray taken after the chest tube had been removed. So, Chris had to go for two more X-rays, this time standing up in awkward positions. Chris, who had just taken a dose of Benedryl to help settle an upset stomach and relax him for his scan, was again not happy about having to stand, especially hugging the X-ray machine, which was wider than his arms could reach. He did it though. Then it was time to return to Nuclear Medicine, where he went into the scanner almost immediately upon arrival. By then, Chris was pretty drowsy from the Benedryl; he cooperated fully with this scan by lying down right away, and remaining very still as he dozed. He was not in deep sleep though, and was roused as he heard his "regular" helpers who work in that Department gather around him and serenade him with his own "Men in White" song. They truly love him, as well as the song he had written about them, and showed it when they sang to him. He smiled (he couldn't do much more anyway, since he was still undergoing the scan at the time). What a fan club he's got!

Speaking of fan clubs, another "fan" of Chris' came by to visit while he was undergoing the evening scan. Barbara left a delightful Spongebob Squarepants pillow on Chris' bed, which he found upon his return, along with several Post-it Notes that showed her love, and the love of her family, for Chris. He couldn't help but smile about all of that! But that's not all: Barbara had arranged for other surprises for Chris. There are a couple of new huge mounted posters (movie trailer quality) for Harry Potter and Yu-Gi-Oh, as well as a pair of cool packages. Knowing how much Chris likes smiley faces and hands them out to others, Barbara contacted a couple of businesses which specialize in smiley faces. So, awaiting Chris is a big box of goodies for Genie (including smiley face bandanna to wear), as well as a smiley face box of popcorn. That doesn't count the other smiley face things that Barbara has sent Chris' way recently. Wow!! Thanks a lot just doesn't even begin to cover it, but it is a place to start, so "thanks a lot!!"

In other medical news, Chris' bilirubin level finally fell a bit more today, from 33 down to 28. Maybe we'll have a less "yellow" looking kid tomorrow. Although Chris had oxygen blowing on him last night while he slept, Chris remained off oxygen throughout today. In addition, Chris' swelling is ever-so-slowly beginning to reduce. His groin area is still enlarged, but somewhat smaller than before, and more reddish in color than bluish. Chris' lower legs seemed to have been a bit swollen today, but not bad. Perhaps that is just some of the fluid from his midsection relocating as it begins to circulate, and hopefully disappear. Chris also vomited after eating dinner, but it turned out to be the result of thick phlegm. So, it was a good thing, even though it didn't seem like it at the time. Again, before bed, Chris required a small dose of morphine to help with some pain and "itchy feet." That, in turn, allowed him to relax as the nurses tried something new to help break up the chest fluid and help Chris be able to breathe more deeply and cough better: they used a small percussion device to beat on his back similar to the way that parents beat on the backs of babies so that they can burp after being fed. In fact, after telling Chris what she was going to do, the nurse left the room to go find the device; Chris was feeling well enough to consider pretending to burp when the nurse did that. As it turned out, he forgot to actually do it, but at least the prankster side of Chris is still in there somewhere. Maybe we'll see more of "him" tomorrow.

Oh, there are some new pictures of Chris post-surgery on his website. His yellow tint doesn't quite show out too well in the photos, but for a few days, Chris truly looked just as yellow as Spongebob Squarepants. His eyes are still that color, but his skin is paler than that now.

Joke of the day -- (thanks Greg) -- What was the turtle doing on the highway? About 1 mile an hour.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, November 15, 2004 6:45 AM CST, Late Posting for 11.14.2004

Hi Everybuddy!

There was some, but not a lot of medical change today, since Chris's current difficulties appear to be related to standard surgical recovery; he just needs time to heal. Chris
remains jaundiced but is the paler shade of yellow, as opposed to the "happy face" shade that he has been recently. It is most apparent in his eyes. He continues to move around a little bit more often, but still spends most of his time in bed. However, the length of time that he is alert is growing. He continues to take medication to help drain his body of excess fluid, so he has to urinate fairly frequently (in fact, within 30 minutes of each dose, Chris starts having to "go" about once every 20 minutes). Although Chris did not particularly like having to deal with a foley catheter to catch his urine, later in the afternoon he realized that it did have some benefit, in terms of not having to get out of bed each time. But by early afternoon, he was medically cleared for its removal. He really did not like the actual removal part, especially because he is so swollen down there. Chris' bowels are slowly reawakening, and by tonight he produced something pretty close to a normal stool (sorry for the detail, but it is an important part of recovery from surgery). Not only that, Chris' oxygen intake level was reduced, and he was completely off oxygen for about 3 hours.

Although Chris was not in the best of moods this morning, it again steadily improved as the day went on. His eating is also improving, which may account for some of the mood enhancement since a week is a long time to go without eating. He ate about 1/2 bowl of Cheerios for breakfast, about 2 ounces of chicken tenders for lunch and another 2 ounces of ham for dinner, along with a few raisins. He's drinking better, too.

After allowing for a rest after lunch and the removal of the catheter, Chris was awakened in order to start his walking journey. He asked for a wheelchair, but Mom and the nurse told him that he needed to walk the whole way from his bed to the door leading to the Neonatal Intensive Care Unit (NICU) and back (a combined distance of about 50 yards). He merely sighed and shuffled onward. Walking hunched over and gripping the handrail and Mom's arm, Chris completed the distance in short order, and was rewarded with sitting upright in a chair while Mom (ever so slowly -- on purpose) changed the linens on his bed. The idea was to keep him up as long as possible. Mom handed him the GameBoy, and Chris actually began playing it in earnest this time for about 10 minutes. When he tired of that, Chris switched to reading his Nickelodeon Magazine. He did a very good job of sitting up in the chair for at least an hour -- without complaint, almost as if he didn't even realize where he was and what a big accomplishment that was. (Not even Mom could drag out making the bed for an hour; Chris did not complain or comment when Mom sat down next to him in another chair and starting reading a magazine with him.) Finally, he asked to return to bed, a wish that was granted. It was time, too, since upon return, he was "plugged" in again to his oxygen saturation equipment (which measures the percentage of oxygenation that's going on in his blood); it had dropped to 89% and stayed at that level. He needed to get back to his oxygen supply.

Chris was still somewhat alert when he returned to bed, so Mom thought it would be a good time for him to say hello to a couple of people, knowing that these would be very short conversations. Mom dialed Grannylyn and Granddad's number for Chris, who left a very weak-sounding "hi, it's Chris" message on their answering machine. Next was Grandma and Grandpa's turn, but their phone line was busy. So, Chris then faintly said hello to Greg. By the time Grandma and Grandpa were called again, Chris fell soundly asleep. He speaks very weakly in person right now, so such conversations will just have to be very short for the time being. The most important thing right now is of course for him to build his overall strength again.

Uncle Brian stopped by for a visit while Chris napped, although Chris did wake up for him at one point. Chris acknowledged his presence, but still was not able to fully engage with Uncle Brian. The dinner tray arrived at about the same time as one of the resident physicians, who wanted to reposition (internally) Chris' chest drainage tube. Although daily X-rays are indicating that fluid remains in Chris' chest, very little fluid was draining any more from the chest tube. She likened it to a situation when someone drinking out of a straw in a glass filled with ice cubes and a drink tries to suck the drink through the straw, but the other end of the straw is up against an ice cube. No drink gets through the straw because the ice cube is in the way. Likewise, a similar situation occurred with Chris' chest tube ("straw") having been too close to the internal wall of Chris' chest cavity ("ice cube"). So, she wanted to withdraw part of the chest tube to get it away from the chest cavity wall so that more fluid could be vacuumed out by the collection matrix. Externally, this meant that a couple of sutures needed to be snipped, the tube pulled back a bit, then a couple of new sutures needed to be placed. Uncle Brian thought he was going to join Chris for dinner, but instead, he got to see a bedside medical procedure. Chris received a couple of different sedatives to help put him into "la-la-land," which worked beautifully. He was out of it for just the right amount of time; once the doctor had the tube repositioned and resutured (it worked very well again, and fluid began to drain again), Chris was just beginning to rouse from what he apparently thought was a very nice dream. In fact, he was full of smiles, and at one point asked if this was heaven.

As the drugs wore off, Chris ate his ham without complaint. Thereafter, he took his nighttime medicine (including a new chalky-tasting one that, despite being mixed in Gatorade, still did not taste good), was cleaned up and readied for bed. He fell right to sleep, after he urinated (again). Unfortunately for him and for Dad, the most-urine-producing drug was administered at dinnertime through his IV, so that the full effect was hitting in just as Chris was trying to settle in for the night. Hopefully it will run its course quickly tonight so that both of them can get some sleep at night.

Joke of the day -- (thanks Uncle Tom) -- What do you call a fairy that doesn't take a bath? Stinkerbell.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, November 14, 2004 11:14 AM CST

Late entry from November 13, 2004:

Hi Everybuddy!

This morning, Chris still looked quite yellow, but that improved somewhat during the day. He is now moving around a little more often, primarily to use to the portable commode. He made five trips there throughout the night, thinking that he had to go "number 2," but only really ended up "going" twice. He and Dad are getting quite proficient at moving all of the tubes and wires around quickly. Chris developed some new and relatively painful abdominal cramping throughout the night and morning. A stool sample was sent for analysis; the only thing we know for sure about that is that he's "negative for C. diff.," which is a bug that is commonly found around hospitals. He was in pain periodically but still managed to keep things in perspective. He also acquired a new roommate around midnight, which kept things busy in the room until about 2:00 a.m. After that, it quieted down, but for the few occasions that Chris awoke needing to go to the bathroom. The nurse ordered a new privacy curtain for Chris' part of the room since the original one didn't reach the floor. Some of the other nurses thought it humorous to be able to see Chris' "moon" from the hallway (Chris would have thought so, too, if he were in the proper frame of mind to appreciate it).

Chris' genital area is very swollen right now, probably as a result of having been in bed too long. Fluid has a tendency to accumulate at the lowest part of the body (which is why some people's feet swell up). Because Chris has been in bed so long, his feet have been up off the floor and his head has been somewhat elevated; that in turn has left his groin and hip area as the lowest part of his body for five days in a row. Several of the doctors examined him and weren't too concerned; they merely demonstrated how to fold and wrap a thick medical cloth in order to "prop and lift" the area so that it is no longer the lowest part of his body. It was still swollen when Mom left Chris tonight, but full recovery is expected as Chris gets up and about more.

Nonetheless, Dad started thinking about Chris' in-patient Kid's Olympics. He conceives of it as mostly walking, sitting, and videogame playing events. Chris approved of the concept, but not very enthusiastically. Dad asked the medical team to mount all of Chris' many pumps and bags on his IV pole and to round up a wheelchair for Chris' use. There is also a way to mount Chris' chest tube collection matrix, foley catheter (urine) bag, and oxygen tank.

Chris' mood was still rather angry this morning, primarily because of his abdominal pain, not at the incision site. Throughout the morning, he got up three times to use the portable commode. On the last attempt, Chris could not make it there in time without soiling his bed a bit. Like yesterday, that actually was a blessing because, after he finished his business and was cleaned up, Chris sat in a regular chair until his bed could be readied. He grumbled and looked rather unhappy about it, but sat there anyway. One of the medical students came in to see him about that time. Upon her questioning, Chris said that his tummy still hurt but that time, so did his incision site. In accordance with the standing orders, Chris received a one-quarter-of-a-normal-dose-for-his-weight of morphine to help him feel better (he had been receiving some other medications to help his digestive tract). He also received a second hospital gown so that both his front and backside could be covered. Then he was transferred to the wheelchair in preparation for his walk.

Once again, Chris was not a happy camper about this, but he grudgingly cooperated because it was the fastest way for him to get back to bed. It takes three people to safely help Chris walk: one to control the heavily laden IV pole, one to steady Chris, and another to push the wheelchair behind him, which carried the oxygen bottle as well as the chest tube collection matrix and the catheter bag. Because of his lower abdominal pain and the recent dose of morphine, Mom and the nurse took Chris to his "bronze level" walk. The hallway has a handrail along much of it that we're sure is no coincidence. Chris was slowly wheeled down to the starting point (about 25 feet or so). Then he was helped up, and he scooted down, holding on to the handrail with both hands. He started off on his tippy toes, but when it was called to his attention, Chris flattened his feet to the ground. When he got about halfway through his "course," one of the nurses congratulated him on being halfway finished. All of a sudden, Chris started speeding up a bit, trying to get to the "finish line" so that he could be finished with it. Again, he was rewarded with praise and the opportunity to return to bed. Like yesterday, Chris felt better afterwards. Everyday, we'll alter the walking course just a bit, just to keep things interesting. He will be moved to a chair draped with a sheet next to his bed so that he can sit there for as much of the afternoon as he can stand. Hopefully, he'll get into playing his video games again. Chris not playing any GameBoy games is a bit disconcerting as it has often been a way to "escape" the drudgery of hospitalization.

But, Chris did feel better after the walk. He remained awake for a couple of hours. He paid attention to a movie on television. He opened his GameBoy and played with it for a couple of minutes. He remained awake while he had a couple of visitors. He even, very briefly, spoke with his best friend, Greg, who called to see how Chris was doing. Mom had to hold the phone for him, but he did managed to very quietly talk (actually, mostly listen) with Greg.

Chris still needed his rest times today though as he continues to try to recover. Most of his blood test results are pretty close to normal (or at least normal for him) again, and even the bilirubin level is beginning to drop. He still has some fluid overall throughout the body, including in the abdomen and in the left side of his chest. That is expected to recover on its own, given no unforeseen complications. Because Chris is a little stronger and a little more balanced on the cellular level now, his doctors have changed his medications a bit in order to reduce the impact of his bile as well as the overall fluid retention. The effects were beginning to show by this evening, when he began to urinate "like a racehorse." Chris still appears yellow, especially his eyes, but it did start to look a little better by this afternoon. His attitude even started to improve a bit. He had a few smiles to share and he even pulled a prank on the medical student assigned to him. After his walk, she came to check on how he was doing. Chris' expression looked a little flat, but then he had received morphine not too long beforehand. At the time, she was checking his feet; she touched his toes and asked if he could feel her touch. Without changing the expression on his face, Chris mumbled, "no." The medical student began to wonder what may have happened to cause possible nerve damage, but experienced Mom saw a twinkle in his eye as Chris said that. Chris saw Mom looking at him and he couldn't hold that flat expression any longer -- he smiled. The medical student then looked relieved and laughed.

Chris tired out and remained in bed for most of the evening, but for getting up to use the portable commode. He was cleaned up for the night, and was able to resume taking most of his usual night time pills (albeit slowly because he's still not used to swallowing much). During one of his excursions out of bed to reach the portable commode, one of Chris' tubes got caught on the IV pole and the bedrail; it caused the needle that is stuck in his mediport to be pulled most of the way out. His nurse was going to change it tonight anyway, but that was not the preferred way of doing things. Fortunately, Chris was not really hurt by the needle coming out, and it was replaced shortly after he returned to bed. A little while later, two resident physicians and the medical student returned in order to remove the triple lumen device that had been attached to Chris during the surgery in order to provide more IV line access for him. That was good news because that's a few less tubes to have to worry about. This procedure only required snipping a couple of sutures, slowly removing the internal part of the tubing, and firmly maintaining pressure on the site in order to make sure that he didn't start bleeding there. It worked, but again Chris was not happy about it; he felt a little bit of pressure, but he was mostly nervous about what was happening.

Joke of the day -- (thanks Uncle Tom) -- Food for bad dogs is bought by the pound.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, November 13, 2004 10:44 AM CST

Late entry from November 12, 2004:

Hi Everybuddy!

Chris had a difficult, but not medically bad, night. His room now sports a little portable toilet that has already received a couple of workouts. Chris' nose tube was removed but he still has his foley (urine) catheter. Dad has taken advantage of several movement opportunities to give Chris a "makeover," including a shampoo with Chris' "space shampoo;" none of those efforts were able to scrub away Chris' yellowish color. Chris happened to be sitting up while using his new toilet, so Dad washed his hair and all as Chris' nurse worked around his bed. It wasn't up to NASCAR standards, but it seemed that Chris was up for the experience and felt better after getting cleaned up a bit.

Last night Chris just couldn't get comfortable because he hasn't mastered the procedure of coughing with the assistance of a rolled towel (his abdominal muscles are still sore). He finally got a small dose of morphine around 2:30 a.m. which finally let him drop off to sleep for a bit (the same thing happened again this evening). He's doing well but has a little "lung noise" or "rattle," so the intent was to increase his activity level today. An X-ray later in the morning confirmed that the fluid is draining properly in his chest, but there is a little fluid in the upper abdomen. For the moment, nothing needs to be done for it, but it will be monitored.

One surprise that Dad and the ICU learned of last night was that the Nuclear Medicine study performed yesterday was actually a two day study. The idea was to watch the "decay" of the radioactive isotope with which he had been injected in order to get an idea of whether there are particular problems, especially with the way bile is made and moved through his body. It was to take place at 8:00 a.m. this morning, during the nurses' shift change. Chris' daytime nurse learned of it last night before she went home, so she voluntarily came in earlier this morning in order to be able to take Chris to his scan. Like yesterday, Chris was brought down in his bed; there was the usual confusion involved in moving him from his bed to the scanner bed, but there was a method to the process. Chris felt some pain on the move to the scanner bed, but once wrapped up and firmly in place, he quieted down. Chris didn't make a peep thereafter. Dad read some of the 5th Harry Potter book (which he has been reading with Mom at bedtime) to him. After the scan, an alert Chris was moved back into his bed, which thankfully was painless. Chris had a little fun during the movement to and from the room; there is a long ramp that is a bit of a surprise at one point between the two buildings (this hospital is comprised of more than one building that are connected together). We had no problems and the ramp was a little fun.

Dad started getting the staff thinking in different terms today by asking if Chris could or should take his "usual" medications used to keep Chris safe from pneumonia and shingles. After checking with the surgeon, the answer was no because this post-surgery phase is a little different and he's being protected by another strong antibiotic. Nonetheless, the idea was to start looking toward eventual discharge (which cannot yet be predicted, but it is safe to assume that Chris will remain where he is through the weekend). Chris was also authorized to use his usual quick dissolving oral Zofran tablets, which work better for him than the IV variety that this hospital keeps in stock.

Chris was still pretty sleepy, so he fell asleep not long after Mom's arrival this morning. But his sleep throughout the day was not quite as intense as it had been over these past several days. He had three visitors today (his current teacher, his former teacher who has since retired, and a good friend whom we met as a volunteer at the RMH some 4 years ago); he opened his eyes ever so briefly for each of them. Throughout the day, Chris was still a little on the grumpy side and sometimes just closed his eyes to tune everybody out, but he generally did better as the day wore on. Although the bilirubin is still high (it didn't really change overnight), the ammonia levels in his blood have come down. Aside from the big surgery, the jaundice can be increasing his fatigue level as well.

By midafternoon, Chris was grouchy and yelled that he had to go "number 1." Again, he was told to relax and just let it go because he was connected to the catheter. He cried that he couldn't, but that he thought maybe it would be easier if he could just sit on the toilet so that it would feel more natural. Mom and the nurse started moving all of the tubes, etc., over and getting things ready for Chris to do that, but they just weren't fast enough. Chris wasn't aware of it at the time, but the sensation he felt was apparently to do "number 2." So, he didn't quite make it in time. Not to worry: he was cleaned up, as was his bed and the tubes that were in the way at the time. Meanwhile, that experience provided a good opportunity to sit him up in a regular chair for a little while. He was not particularly happy about doing that, but he did so anyway because it was "checking a block" off the list of things that he knew he needed to get done today. While he was sitting there, the nurse found an IV pole onto which to transfer most of Chris' pumps so that Chris could "check another block:" walking. At that point in time, Chris' chest tube drainage system had to remain attached to the vacuum, so he could only walk as far as the length of that tube. He really got angry about having to do that, too (he told Mom several times that he hated her), but at Mom and nurse's insistence, he walked it twice (probably only a combined total of about twenty paces). He was rewarded with cheers and permission to return to bed.

He dozed for about an hour, then woke up on his own again. In the meantime, the doctor had upgraded Chris' diet to "regular," even though he had not eaten anything at all. So the dinner tray arrived with menu choices that he did not select, the highlight of which was macaroni and cheese. Chris had absolutely no appetite and was not interested. (Mom tasted the macaroni and thought it was pretty good; Chris may want it tomorrow perhaps.) Chris was bored and tired of laying in bed, but also did not feel well enough to do much of anything. He asked for a magazine, but then didn't want to look at it. He asked for his GameBoy, turned it on, but couldn't focus on following the game. He asked for a video, which was started for him, but he fell asleep after about 20 minutes. When dinner arrived, he wanted no part of it. Since he was awake and there did not seem to be any danger of him choking on it, Mom persuaded Chris to just let little "mouse bites" of a saltine cracker dissolve in his mouth. He agreed. Of course, once they got in there, Chris started a little bit of chewing. He polished off a whole cracker and washed it down with some Dr. Pepper. Not much later, Dad arrived with some ham. Chris ate a little bit of that, and drank a few sips of fruit punch. It's not much to eat, but it is a start. Maybe it will turn on his appetite and awaken Chris' digestive tract for better action tomorrow. We can say that by evening, Chris was still fatigued, but he was in a somewhat better mood. There was even a little smile at one point. There is hope that "the real Chris" may be able to resurface for at least part of tomorrow.

Joke of the day -- (thanks Uncle Tom) -- Why didn't the hot dog want to star in the movie? The rolls weren't good enough.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, November 11, 2004 9:14 PM CST

Hi Everybuddy!

Mom got a bit of a surprise when Dad called her a little after she awoke this morning to let her know that the guys had switched hospitals again. They were again back at the Pediatric Intensive Care Unit (PICU) at New York Presbyterian. Dad's actually happy about the change since the PICU offers Chris more options and better response; that's what ICUs are for. This was not a step backward for Chris, but more like getting out of the fast lane of recovery and into a more "normal" traffic flow.

Chris went his CT scan last night, which necessitated replacing his naso-gastro (NG) tube down his nose since he wasn't able to drink the required contrast. Chris doesn't like NG tubes (he "lost" about nine of them during his two transplants). It is not a pleasant experience inserting one down the nasal passage into the stomach (nor is it so pleasant to have it come out, for that matter). He bore it like a champ. Now if that hadn't been enough, that tube was preceded by the replacement of the foley catheter, which is used to remove urine from the bladder. Dad asked them to "numb" up the area like with something like Emla cream, but they came up with another fine idea that worked. Nonetheless, it isn't a pleasant experience either. Last night's experiences weren't without glitches, so Chris handling both tube replacements is to be admired.

The CT scan was a "special" study, which involved an in-stream contrast infusion (which can make Chris puke -- a good way to lose a NG tube) and it required him to control his breathing, one time for twenty seconds. Dad got "suited up" in a lovely lead jacket so that he could ensure Chris was awake to follow the breathing instructions. They held hands and Dad told Chris a story. Chris did a great job of being awake at the right times in order to comply with the breathing instructions. A very pessimistic radiologist was quite pleased with both the study results and Chris' ability to be "in the game" at the right time (some of Chris grogginess is due to his liver's inability to purify Chris blood of wastes in its usual efficiency). The nurses who accompanied Chris from the Pediatric Observation Unit (POU) at Memorial Sloan-Kettering were duly impressed, too. The results of the CT scan indicated that the bile ducts and some blood instruments were a little swollen but not obstructed. Some fluid (probably not blood) was noted to be in his chest cavity.

Once back in his room, Dad received a blood test result that indicated that the ammonia content was too high in Chris' blood, so he received some medicine for that. One side effect that they didn't tell Dad about was possible diarrhea. Once things quieted down a bit, Dad was busy cleaning up the room and making Chris' bed more orderly when a nurse came in and started to help. While that was in progress, Chris said that he had to go "number 2." That sort of surprised Dad since Chris' bowels seemed to still be "asleep" from the anesthesia. Since there was a mess of tubes and wires again surrounding Chris, it took a few minutes to get him out of bed and heading to the nearby toilet. He walked to it assisted most of the way. As fate would have it, a rolled towel got caught up in two different tubes. Both the nurse and Dad let go of Chris just before he was to sit down. Chris walked lightly into the wall (like a cartoon character) and remained standing by leaning his head against the wall until the two of them were able to get him sitting down. He thought that it was funny but it was an eye-opener.

When he got back into bed, Chris' oxygen level in the blood dropped. No matter what Dad and then the nurses did, it would not increase. At that time, the decision was made to return Chris across the street to the PICU. The ambulance crew came in, along with the doctor who accompanied on Chris' first ambulance ride. They ably got him back to the PICU. Chris was awake for much of the short ride, so he should be able to tell his friend Greg about it (well, that is, if he remembers it).

The gang at the PICU gladly received Chris back and got him settled in. Dad learned that there wasn't the best exchange of medical information on Chris from one hospital to the next, so he told them about Chris' CT scan earlier in the evening and other minor details that were helpful but were not "charted." The docs got working on garnering that information. They repeated a series of test done at the POU and cultured his lines to check for infection (he had no fever though). Recognizing this as a form of respiratory distress, they then began planning how to drain Chris' chest cavity of the fluid that was building up around his lungs, especially on the right side. They
periodically updated Dad on their progress. During this time, Chris' breathing became a little more difficult, but he still had good values. Chris also had to have another bowel movement. For the first time in over five and a half years, Chris used a bed pan (he was almost tied onto the bed with so many tubes and wires). It went well and when Dad updated the surgeon about such things. The surgeon asked Dad what color it was. Hmm, well, it was green. That apparently is a good color at this time; it shows that his system is clearing itself of bile. The things we learn about hanging out at hospitals . . ..

As it turned out, one of the young doctors (this is a teaching institution) who has been attending to Chris over the last few days was present and performed the insertion (under the skin) of chest drain but waited about fours hours until all of the test results that she wanted were back. It was a good call. Her boss administered the anesthesia. Dad was able to remain in the room (unlike what had been explained to him) to help hold Chris' arms out of the way. It was sort of like combat lifesaver training, only with your kid -- not cool. Things were done right there in the ICU on his bed and were moving along carefully but well. Then the unspoken tension in the room sort of calmed a bit when Chris' surgeon walked in (like when a good leader shows up in a chaotic situation). He was checking in on Chris, and it must have been the first thing he did. Dad could tell that all of the doctors knew who he was, respected him, and that the "pucker factor" of the doc inserting the chest drainage tube increased just a bit. The procedure went quite well. The surgeon did a bit of coaching but clearly was going to let the younger doctor do her thing for Chris. After she siphoned out the first 30 ml of fluid from Chris' chest, her boss and Chris' surgeon left to talk about scheduling another study using a nuclear medicine scanner today. The doctor doing the procedure got the collection system primed, and it began eliminating about another 400 ml from Chris' chest. This allowed Chris to do some healthy coughing. He wasn't able to cough well before due to all of the fluid surrounding his lungs. Chris started breathing easier, too. Dad joked with the doctor and mentioned what he had noticed about the surgeon's presence. She smiled as she did feel his presence wanted to do well. She did. So, as it turned out, today Chris got out of the "fast track." He is doing a more typical recovery for his kind of surgery, and we think that he's in a great place to make that happen.

The big thing for Chris now is his elevated bilirubin level (it's an enzyme from the liver), which is responsible for his yellow appearance (jaundice). Chris' surgeon came back from his meeting with the senior PICU doctor to explain his plan for identifying and correcting Chris' bilirubin problem. Aside from blood tests, Chris was slated for another scan, this time one done in nuclear medicine that focused primarily on the gall bladder.

Chris was called for that scan at around 1:30 p.m. Although he traveled there in his own bed, it still takes a while to make that happen because his pumps and monitors have to be moved away from the walls and attached to poles for transport, the oxygen needs to be transferred to the bottled variety, etc. Then there is the move itself. This is a large hospital, containing several buildings that are connected. The Nuclear Medicine Department is located on another floor in another building, so it took some time to get there. Once there, Chris needed to get transferred onto the scanner itself, which again meant moving all of his accouterments onto and surrounding the scanner. He was a little uncomfortable during the move from the bed to the scanner, and a call was made for more morphine. Mom wanted to avoid giving him any more morphine if it could be avoided because we need to rouse him more than he has been. Fortunately, once Chris was tightly secured onto the padded metal board that is the bed of the scanner, Chris felt better and fell asleep again. It's a good thing too because this scan required him to remain still (at least his midsection) for two hours. He slept for the first hour, but then woke up because he got hot. (The "ceiling" of the scanner comes down within about an inch of his body. It's a big machine and Chris was tightly wrapped to keep him in place.) He was grumpy and let everyone in the room know that he was not happy about being in there. The technicians lowered the temperature to the point that Chris' accompanying nurse grabbed a blanket to wrap herself in; Chris was content though. A television and VCR were located, and the most mature film that was available ("Snow White") was started. Chris kept his eyes closed and tried to relax, but about every 15 minutes, he'd wake up and demand to be released. Mom just calmly talked him into settling down since he was more than halfway through the scan. He grumbled but complied because Mom reminded him that if we stopped, we would have to repeat the scan and start all over again. Chris got through it, and just as soon as he could (even before he could be transferred back onto his bed), he stripped off his sheet and the blanket that was used as padding, and raised his gown, basically "flashing" himself to the technicians and the nurse. Interestingly, he didn't seem fazed at all about all of the new stitches, catheters, tubes, etc. He was just hot and wanted to cool off. By the time he was ready to travel back to his room, he was ready to cover up again.

Although Chris was drowsy for much of the day today, he was more alert when he was awake than he has been since the surgery. The fact that he was grumpy was actually considered to be a good thing because it showed his nurse that he's ready to start taking some little bits of control over his life. Besides, he didn't really do anything except blow off a little steam. He rested a little bit in his room, but not for long. Uncle Brian stopped by for a visit. Chris was fully alert for part of Uncle Brian's visit, but he really wasn't in the mood to interact with anybody. So, Mom and Uncle Brian visited with each other right there next to Chris. The surgeon came by while Uncle Brian was there, reporting that the tests indicate that the probable reason for Chris' jaundice (and associated fatigue, etc.) was due to cellular damage or trauma to the liver as a result of the surgery. There was no indication of any infection or duct blockage, etc. That being the case, this will probably disappear on its own over the next few days. That includes Chris' swelling and bloating, as well as his elevated bilirubin. Although Chris started the day again with relatively low urine output, it increased as the day went on, particularly after he received a relatively rapid infusion of extra fluid to stimulate his urinary system. By around 5:30 p.m., he really started to "go." The urine gradually was becoming lighter in color, too. The same is true of the chest fluid, which had been red with blood mixed with whatever else was in it, but lightened up to an orangey color.

The surgeon also gave Chris the green light for clear liquids tonight, and if he continues to do well, for a light breakfast tomorrow. Chris gladly accepted his ice water immediately, and was satisfied with about 1/3 of a cup of the first liquid he's had in his mouth since Sunday night. The trade off though is that Chris has to continue working with his breathing machine. He's supposed to inhale deep enough to make the little ball rise up inside it. He can't do it yet, but once he was able to make it quiver a bit. That's progress. That effort had the desired effect: it made him start coughing. That of course hurt. Mom again asked to hold off on the morphine since the last few hours were the most alert that Chris has been, and she didn't want to lose it. There is now a standing order for Chris to receive 1/2 of the smallest typical dose for his weight, to be used if needed. For the moment, Chris hugged a rolled up blanket when he coughed, which was good enough as far as Chris was concerned. That effort though made him sleepy again. That timing wasn't great because Chris and Mom had discussed possibly making a very quick call to his friend, Greg, whose birthday it is today. Chris is not yet ready to carry on a real conversation with anybody yet, but he thought that if Mom dialed the phone and held it to his ear, he might have been able to simply wish Greg a happy birthday. But, we'll wish him that here in this update. We think that now that we have an idea of what's going on in him and are addressing his needs (including a new medication to help his liver recover better), Chris will become less lethargic and more inclined to start up with his usual pranks, game playing, and chattering.

Joke of the day -- (thanks Uncle Tom!) -- What did the toilet say to the other toilet? You look a little flushed.

Happy Birthday Greg! Happy Veterans Day!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, November 11, 2004 7:25 AM CST, Late Posting for 11.10.2004

Hi Everybuddy!

Chris again spent most of his day at the New York Presbyterian Hospital's Pediatric Intensive Care Unit (PICU). He was generally very comfortable, grimacing only a bit when he moved left or right. Once again he spent most of the day asleep. Part of this sleepiness was drug induced though since low dose morphine had been ordered for him in order to keep him comfortable during the day's movements. He was comfortable before he received the morphine, but the idea was, since he was due to have the rest of his tubes out and especially because he was going to be moved back across the street to Memorial Sloan-Kettering Cancer Center's (MSKCC) Pediatric Observation Unit (POU, pronounced "poo," a name that Chris' 10 year old sense of humor no doubt would have appreciated, had he been awake enough).

The urine catheter, the tube that was down his nose and the arterial line ("A line") were all removed around noon today. Because of the morphine, he stirred a little while each of those lines were removed, but otherwise did not seem to feel the effects of the removal. The oxygen remained in place because Chris' oxygen saturation level would not remain sufficiently high when he did not have the mask in place. He has a little machine that he is supposed to use in order to measure his ability to take a deep breath (inhalation), but he was not able to make the little marker move at all today, even though he tried a couple of times. He has coughed a bit today, trying to get rid of the "gunk" so that he can breathe easier, but his chest is still "rough," in the words of one of his nurses.

Twice, Chris got up at bedside in order to make use of the urinal. But the effort involved in moving in/out of the bed and standing there for a few moments, combined with the morphine effects, was enough to cause him to doze off again. Most of the time, he could be roused by calling his name and asking him questions, but Chris simply could not stay awake for very long. For example, a couple of times, he asked to look at his Nickelodeon Magazine. He flipped a couple of pages, then fell right to sleep. Another time, he asked for his GameBoy. He checked to make sure he had the game he wanted to play in place, was able to open the GameBoy, but fell asleep before he could turn it on. Yet another time, Mom asked him to find Nickelodeon on the television; Chris handled the remote (although not quite as skillfully as he normally does), found the station, then fell asleep before he could actually watch any significant part of a show.

Chris was transferred back to MSKCC's POU at about 5 p.m. Like the last time he was transferred, it was a bit of an ordeal. Although he lost a number of his tubes, he's still connected to others, which administer oxygen, IV fluids, and monitor heart rates, etc. So when he moves onto a gurney, all of those lines, plus the IV poles, oxygen tanks, monitoring devices have to move with him. So, it takes a while to get him out of bed and onto the gurney, then out of the gurney and into the new bed. This time, he traveled in the tunnel under the hospitals and the street. There is quite an extensive tunnel system under the hospitals, and one can easily get lost without a guide (we had an escort, so there were no problems in that regard). He pretty much slept through the transfer, although he scowled a bit about being moved from bed to bed. Chris cooperated as much as he could today, but he was a bit grumpy at times.

Our biggest concern with Chris though has been the fact that overnight his coloring has turned yellow. The whites of his eyes are yellow. In addition, although he has not had anything to eat since Sunday night, he has actually gained about 5 pounds, which has manifested itself as overall body swelling (as opposed to only in his belly). Chris has put out very little urine, and what there has been is dark orange. The urine color can be explained by its high concentration, as well as the trace amount of blood and the elevated bilirubin number. The doctor at the PICU seemed to think that these symptoms could be simply related to the liver's reduced capacity being in the process of absorbing bile spilled during the surgery, rather than something else more serious given the fact that Chris has not had a fever. However, once Chris returned to MSKCC, the surgeon wanted to investigate all possibilities, so he has ordered additional blood testing to check for things like hepatitis, as well as a CT scan to see how the bile ducts are aligned, etc.

In other news, this evening Chris asked for something to drink. That request has been denied, at least until Chris can remain awake enough to be able to not choke on it. In addition, because he doesn't have much in the way of bowel noises, there is concern that even ice chips or sips of water could make him vomit. Chris' last dose of morphine was at 2 p.m., but he was still having trouble staying awake this evening. The explanation for that seems to be that the effects are lasting longer because his liver is not functioning at its top capacity due to the recent surgery. Although Chris was supposed to have gotten out of bed to walk around a little bit, he simply was not awake enough to be stable on his feet. He will be out of bed tomorrow.

Joke of the day -- (thanks Uncle Tom) -- A little girl goes to see the doctor. She's got a pea in one nostril, a grape in the other, and a string bean stuck in her ear. She says to the doctor, "I don't feel good." The doctor replies, "The problem is clear to me. You're not eating right!"

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, November 10, 2004 7:36 AM CST, Late Posting for 11.09.2004

Hi Everybuddy,

Chris spent a reasonably comfortable day in New York Presbyterian Hospital�s Pediatric Intensive Care Unit (PICU). At about 4 a.m., the nursing staff tested his capacity to breathe on his own, and he failed. So, he remained on the ventilator. However, the decision was made to stop the sedative so that Chris could become a little more alert, which would probably allow him to breathe on his own.

The last dose of sedation was given at about 10 a.m. Chris continued to sleep throughout the day, occasionally stirring or twitching, but generally comfortable, until about 2:30 p.m. That�s when he woke up, pointing to his throat and gagging. Because he was a little more alert, Chris was also a little more active, and began making hand movements in an attempt to try to pull out the tube that was in his throat. He actually appeared to be fine, but felt the gag reflex as he tensed up. Nonetheless, he was awake enough to have the tube removed. Once that came out, he fell right back asleep, with appropriate breathing. He wore an oxygen mask though, just to make things a little easier for him.

Ever since arriving at the PICU, Chris was taking in more fluids than were coming out. So during the afternoon, he received medication to help him empty his bladder. Not too long after receiving this medication, Chris woke up, and through his weak and hoarse voice, whispered that he had to go and couldn�t hold it much longer. He was connected to a foley catheter but he didn�t realize it. Mom and the nurse told him to �just go,� but Chris was upset because he didn�t want to wet his bed. He fell right back to sleep, and relaxed enough to �just go.� And that was the end of that problem.

By around 5 p.m. or so, Chris was awake enough to begin rolling onto his side. He had been on his back (albeit on a hospital bed that allowed his head to be elevated) since yesterday. So, basically, he�d roll to the right side for about a half hour or so, then shift to the left side. Amazingly (given the size of the large brand-new scar), Chris did this movement pretty much by himself, holding onto the siderails to help pull himself into place. Mom, Dad or the nurse would help him a bit, move the tubes and wires to appropriate new places and place a folded blanket behind him to help hold him in place.

The surgeon came by in the evening and agreed that Chris seems to be recovering just fine so far. There has been no fever so far, the urine output was corrected, no fluids have been detected to be building in his chest or abdomen, and his chemistry (including liver factors) are where they need to be. This evening, Chris was to begin receiving Vitamin K to help with coagulation, and morphine. The morphine, of course, is to help Chris deal with his pain.

As good as all of the above information is, perhaps the best is that we learned today that Chris does not have any other tumors or spots that are visible on any of his recent scans. (The bone marrow results are still pending.) The official results of Friday�s CT scan indicated the presence of the large tumor that was removed yesterday, but aside from indications of some fragile bony areas (probably the bone marrow sites), nothing else was noted. The confusion was apparently caused by an email sent by one doctor to another. That email identified the patient by Chris� medical ID number, but was not in fact Chris� information. That brought us an immediate sense of relief, followed immediately by concern for the patient whose results to which that email referred. For those of you who pray, please remember this patient, who may not have even previously known about this information due to the medical ID number confusion.

All in all, we considered this to have been a very good day for Chris. If he continues on his current path of recovery, he will probably transfer back to Memorial Sloan-Kettering Cancer Center some time tomorrow. He may also have some or all of his remaining tubes removed. He will probably have to start getting up to walk around a bit tomorrow as well.

Joke of the day -- Have you seen the new hypnosis webpage? Yes, but it put me to sleep.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, and all of the other young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, November 9, 2004 6:41 AM CST (Late posting for 11.08.2004)

Hi Everybuggy:

Chris� day started at about 6:30 a.m., when he was awakened in order to get ready to walk over to the hospital to check in for his surgery. Because he was not allowed to have anything to eat or drink, we intentionally let him sleep late enough so that all he had to do was wake up, get dressed and go. He was in a very happy, relaxed mood this morning, patiently enduring the �hurry-up-and-wait� stuff that happens at hospitals. Finally, he was taken in his �white limousine� (promised to him by one of the Pediatric Day Hospital employees), which was of course a hospital gurney, down to the pre-operative holding area. He passed the time mostly by playing his GameBoy. Mom and Dad said good-bye to him at about 9:20 a.m. Chris did a good job of not getting too clingy � he just gladly accepted his hugs and went on in beyond the doors.

The first hour was spent on bone marrow aspirate procedures (along with probably a transfusion). Once again, Chris� hips were drilled into at four sites (two in the front and two in the back) in order to see whether there is disease in his bone marrow. Those results often take up to a week for the full report, so we�ll have to get back to you about that later. Then it was time for the surgeon to get started on the main procedure.

We received a call at about 3:30 p.m. saying that Chris was in the post-operative recovery room. So, we went there to see him. There was a bit of a delay because an x-ray was in progress. As it turned out, the surgeon came by while we were waiting entrance into the post-operative recovery room. He was able to remove the entire tumor, which was larger than we had thought. We don�t have the surgical pathology report yet, but the surgeon showed us with his hands the approximate size of the tumor: roughly the size of a small (toy) football or perhaps a small brick. Along with the tumor, the entire right lobe of Chris� liver has been removed. Although the surgeon was able to remove it away from Chris� diaphragm, there was a small puncture made in the diaphragm. The tumor was also large enough to have crossed the midline, and it was touching Chris� left (and only remaining) adrenal gland. The adrenal gland was �beaten up,� in the words of the surgeon, but he was able to save it and thinks that it will recover in fine form. While he was in there, the surgeon took a look around at the remaining portion of Chris� liver, and took a couple of biopsy samples. We do not yet have the pathology report, but it appeared to the surgeon that the mysterious �gray� or "ghost� area that has appeared in Chris� liver for at least a year may simply be fibrous material. (If it�s not cancerous, then we can deal with it.) Chris now has another large scar that extends from near the middle of his chest straight down then curves right until it passes the location of the liver (at the top of the abdomen on the right side, just below the ribcage).

Chris handled the surgery pretty well. He required some transfusions, but that was not unexpected: 1) there is blood loss in virtually any kind of major surgery, 2) the liver has a lot of blood vessels in it, and 3) Chris is a low platelet kid, so extensive bleeding is a risk. He generally was resting fairly peacefully, thanks to the post-operative sedation. His color looked good. Aside from all of the tubes (breathing tube in his mouth, another tube down his nose to help remove bile build-up, lots of IV lines, urinary catheter), he�s doing as well as can be expected after such a big operation. In fact, Chris gained another under-the-skin device, somewhat similar to the broviac he had a couple of years ago during the transplant era. So, in addition to his mediport (which is located at his upper right chest), Chris now has a �triple lumen� at his upper left chest, which supports additional IV lines for his medications, fluids, etc. It will probably be there temporarily. He is currently on a ventilator to assist with breathing, primarily because of the powerful painkillers he could be receiving. The idea is to slowly wean him off of that machine over the next 24 hours. The machine has been set to do the breathing for Chris if that�s what Chris wants � he�s been through so much today, but if Chris wants to take any unassisted breaths, the machine will compensate to allow Chris to regain that control, if that�s what he wants to do.

Although he has been pretty heavily sedated most of the day, Chris did wake up momentarily a few of times. The first time, he made hand-signals to Dad, indicating that he wanted to try to write something. During the few moments it took Dad to find sometime for Chris to write on, Chris fell back asleep. About an hour later, he woke up again, wide-eyed and pointing to his throat. Mom and the nurse reassured him that there was a tube there and things would be ok. Chris fell back asleep again. Then about two hours or so later, Chris awoke again. He communicated clearly with his hands and facial expressions that he was frightened because he couldn�t talk. Mom and the nurse again assured him that 1) there was a tube in his throat that passed through his vocal cords, which was the only reason why he couldn�t talk, 2) that he would be able to talk again after the tube comes out, and 3) in response to his hand signal, that the tube would come out just as soon as the doctor said that it could come out. He fell right back asleep again.

The surgery itself took place at Memorial Sloan-Kettering Cancer Center (MSKCC), but Chris is no longer there because that hospital does not have a Pediatric Intensive Care Unit (PICU). However, the hospital across the street does: New York Presbyterian Hospital; those two hospitals work together frequently for such pediatric cases. It�s quite an ordeal to transfer him over there: two paramedics arrived (to �drive� him over there), as did a pediatric fellow, who came over to assist in Chris� transfer. There are so many tubes, wires and hoses to from which Chris had to be disconnected from MSKCC�s equipment, connected to the ambulance�s equipment, then re-connected to New York Presbyterian�s equipment. At about the same time, a bag of plasma arrived, so he had to be connected to that as well. In addition, the new crew had to be brought up to speed on Chris� history.

Barring possible complications (such as bleeding issues, fluid building up in the abdomen, infection, etc.), Chris is expected to remain at New York Presbyterian Hospital for a day or two before transferring back to MSKCC. If all goes well, Chris could be released as early as this time next week. Depending upon how well he is able to recover, he may be able to start some sort of treatment as early as Friday. We don�t yet know what that treatment may entail because we have not yet had a chance to meet with one of the oncologists.

As successful as this surgery was, it is not the end of Chris� treatment. At a minimum, he would have needed some sort of �mop up� therapy to try to eradicate any unseen but present disease. However, something more than that may still be necessary. We learned after today�s surgery that the CT scan that was done this past Friday apparently indicates a couple of previously unseen spots: one on the para-spine, and one on a lung. These spots were not detected on any of the other recent scans. We have not yet had an opportunity to discuss what these spots may be with the oncologists, but we are experienced enough to know that we cannot rule out that this very aggressive and wily disease called neuroblastoma has spread (�metastasized�) to other areas, particularly in light of how big and quickly this liver tumor had grown. We will just have to wait for further information and see what needs to be done in a few days. Right now, Chris has earned a bit of rest; he has been through a lot today. We are very grateful to this surgeon and his team; in his typically humble way, he shrugged off the thanks and just pointed upward and said �that�s who needs to be thanked.� How right he is!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, and all of the other young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, November 7, 2004 8:44 PM CST

Hi Everybuddy!

Chris had a really slow day due to the fact that he had a tough time with all of the preoperative medications that he had to take. They made him nauseous and also tended to encourage bowel movements. We originally planned on going to see the new movie "The Incredibles," but rethought that idea because of the effects of the medicine and also because we were on the wrong side of the New York Marathon route. As Mom and Chris (and later Uncle Brian) found out, crossing First Avenue during the marathon is difficult at best. The effects of the medicine were so yucky and since they were related to his upcoming operation, Dad and Mom let him start on a new video game (it had been purchased to let him "escape" from the hospital during his recovery).

Just because it was a slower day than we thought that it would be doesn't mean it wasn't a nice day. Chris had several visitors and well-wishers. The first visitor was his favorite teacher in New York whom he hadn't seen in ages. She actually found Chris and Mom on the street while they were walking back from church. She came up to our room to visit, then Chris took her on a tour of the RMH (she's seen it many times though). He also got a visit from our friend Barbara and her dog Uno, which unfortunately occurred when he was having a very rough time with some of the pre-operative antibiotics. Mom went downstairs to see her; they finally got together after not seeing each other for about three years. Then Uncle Brian came over for a visit. Chris also had phone calls and e-mails from some of his local New York supporters. Chris checked in with both sets of grandparents, Aunt Jackie, and of course his friend, Greg.

Uncle Brian's visit was special. He came up from Staten Island and ran into the New York Marathon crowds. It was a beautiful day and there were a lot of partying, cheering, bystanders. Earlier, Chris and Mom had been cut off across the street by the wheelchair contestants as well as the fastest of the marathoners. Over the course of the day, we spent most of the time in the room, but Chris, Uncle Brian, and Mom did venture downstairs to watch the RMH's Sunday Matinee feature: the new version of the movie "Around the World in Eighty Days" with Jackie Chan.

There are some new pictures of Chris at the yesterday's charity fun run on his website. Dad was a little surprised to see that Chris hardly has any soreness from his run yesterday; his thighs "burned" a little bit this morning, but did not seem to be an issue once he was up and moving around. He ran most the way at yesterday's race at a pretty reasonable pace. He's been on so much chemo (some of which causes late effects) that he has a tendency to run on his tippy-toes, which is usually more tiring and stressful to leg and thigh muscles.

Tonight Chris picked this evening's meal; he decided to keep Aunt Pat about things and chose KFC for dinner. Just as Mom walked out the door to head toward that restaurant, she bumped into our friend Barbara, who had returned to see if Chris was feeling any better and whether he wanted something special for dinner (we do believe that if he had said quail's eggs, she would have found them for him). To her surprise, he stuck with KFC, so she and Mom made the trek together to the nearby KFC, catching up with each other along the way,

Joke of the day -- Why did the girl tiptoe past the medicine cabinet? Because she didn't want to wake the sleeping pills.

Medically, Chris had no medical problems to report save for side effects from taking his pre-operative antibiotics and medication to encourage bowel movements. Those drugs had their desired effect (something like diarrhea) and an undesired effect: vomiting. Chris is truly ready to report in to the hospital tomorrow at 7 a.m. At one point this evening, he spontaneously said that he can't wait for tomorrow. Although he didn't feel particularly well due to today's medications, he was calm, cool and collected about what he has to face tomorrow. He asked Mom a few questions about what to expect tomorrow (e.g., what kinds of tubes will he have to have, how will he know that they won't make a mistake by leaving something like a bandage inside him, and what if he has to go to the bathroom while he's asleep). In fact, to give you an idea of how relaxed Chris is about tomorrow's surgery, he also asked Mom questions like, what if somebody passes gas while he's in the OR. He's got his GameBoy charged up and has a couple of magazines to take with him in case he has to pass time waiting to move from the pre-operative room to the operating room itself. He is ready. His quiet strength is amazing.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, November 6, 2004 9:30 PM CST

Hi Everybuddy!

Chris had a great day: he got to see our friend Jennifer who cheered for him at the race, ha ran and finished the race, he had pizza for the pizzeria formerly known as York's, he had a really fun race on the PlayStation 2 with Jen (also now known as "the Destroyer") and Mom came up from Florida to join us. For all of you that sponsored Chris and thereby contributed to the RMH, Chris finished his race and there will be some photos from the race on his website in the next few days.

Dad got Chris up early enough to go to the RMH's breakfast and a movie where Chris ate two small doughnut holes (or whatever you call them). Ritchie, a longtime volunteer for the RMH who has run over twenty marathons, told him that Chris should eat more, but Chris seemed to know what he wanted. The RMH provided a van to get the kids who would be running to the starting point in Central Park.

The race was well done this year and there was excellent kid control (thanks to volunteers, police, and firemen) and lot of fun. There were also more kids this year, which required about ten heats of kids. The race area was set up very well with much better control measures with which to safeguard the kids. Jen linked up with us about a half hour before the race started. Chris got to goof off with Jen and Dad for a while before being called in to the race area. The kids were broken down into heats based on age. Boys and girls ran together. Our friend Barbara also linked up with Chris and gave him her usual hug. She helps out at the race and keeps an eye out for him, too. Chris was given the opportunity to run in the quarter mile race with the younger kids, but he was set on running the whole half mile with the other ten year olds. Chris mostly ran but did walk once. He ended up at the end of his heat and finished the race with a volunteer runner. The two crossed the finish line amongst a lot of cheering people. Thanks for your pledges thus far as Chris has over $600.00 in pledges this year. Over the course of the four races he's run for the RMH, he's raised well over $3,000.00. Thanks! He said that he wants to run again next year. Chris was pretty tired when Dad and Jen linked up with him but the three still walked back to the RMH.

After the race, we walked through Central Park and on to the pizzeria formerly known as York's; they walked by a place that Chris calls Chris' Mountain. They couldn't climb it today as its been fenced off due to it being re-seeded. We then hiked a mile or so to the pizzeria and then went on to the room to play a video game. Dad always thought the game "Lego Racers" was pretty boring, but Jen "the Destroyer" had her race car doing things that Chris and Dad didn't think possible, most of them were destructive (and unintentional). It was a lot of fun and laughs. Chris was sorry to see her go as he loves her visits and she has been a semiofficial member of the family for years.

After a bit, Chris decided that Chinese food might be good tonight so he and Dad went to their nearby favorite Chinese restaurant. They split Chris' (and Mom's) favorite: sweet and sour chicken. While there, Mom called in to let us know that she had arrived at JFK airport. Chris had a big smile once he guessed who had called Dad. She got in to the RMH about forty minutes later. Chris hid behind the door when he opened it. When she turned around and held out her arms for a hug, Chris scooted around her and hugged Dad. He then laughed and gave Mom a big hug.

Joke of the day -- What does a martial arts fan eat? Kung Food.

Medically, Chris had no medical problems to report.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, November 5, 2004 9:11 PM CST

Hi Everybuddy!

Whew! It was another very long day at the hospital. This morning though, he got to have a light breakfast and also go in a little later primarily to go to class but also to get a CBC. Chris then decided to spend the rest of the afternoon waiting for his afternoon CT scan at the clinic even though Dad offered to take him back to the RMH.

The CBC results were sufficiently good as to preclude him from getting any G-CSF shots throughout the weekend. Unfortunately Dad didn't get a copy of the CBC but his platelets were about 77 and his ANC was above 2000.

Chris also got to see the surgical nurse practitioner who was very pleased with how he was looking and how his tests results were. Things are still a go for Monday. Once leaving the office, he walked past the other surgical nurse practitioner as she was telling on little boy on a gurney heading for surgery that everything was going to be OK. Chris said that he wished that he was that boy on the gurney.

Chris then went into class with his new teacher. Dad gave her the test from Florida to administer but expressed a concern that maybe there was something on the test that neither he nor possibly she hadn't taught Chris (his class sometimes skips around when the class has mastered certain concepts and maybe that's how we got out of synch). She is going to hold the test until after his operation. They also did some writing work.

After class, Chris and Dad hung out in the playroom. Chris was feeling tired despite sleeping in late. He eventually perked under the coercion of both Dad and one of his favorite child life volunteers, Dora. Chris, Dora and Dad played a mega game of Monopoly. Very soon after the start of the game, Dora ran into a slew of good fortune and eventually ended up building all of the game's hotels and many houses on just about all of the property that she obtained and then got through Dad's bankruptcy. Chris held on for quite a while but good fortune smiled upon Dora today. Everyone had a good time.

Even after the mega game, Chris had time on his hand before the CT scan. The guys ended up watching the movie "Ella, Enchanted." The guys had the playroom virtually to themselves by then.

The CT scan went without incident although Chris got a little sick to his stomach just as they finished injecting the midstream contrast. He had a nurse there today from Cologne, Germany and the three got talking about Germany. Chris mentioned that he had his Cousin Lisa there and Dad mentioned that he had lived in Bayreuth and Stuttgart. The nurse had grandparents in Bayreuth and as it turns out lived only a few blocks from where Dad once lived. Its a small world. After giving out happy face pins to those who helped him, Chris and Dad headed back to the clinic where one of the nurse practitioners de-accessed him.

The guys then headed back to radiology to drop off the IV pole they had used to get Chris and his IV back to the clinic. They then went out by way of nuclear medicine. There Chris dropped off a song that he and Dad had written called "Men in White" sung to the tune of "Men in Black." Chris actually started working on it while waiting for an MIBG at MSKCC in February of 2003 ( they do that a lot) and then finished it in Tampa (while waiting for an MIBG). He had already given a copy to the gang in Tampa (who have it hanging in their area) and today he gave it to the New York gang. They loved it and told him that he should record it and submit it to the MSKCC kid's newsletter. The original four people that he gave the song to began collecting coworkers to read them the words (one guy even began to sing it, too). Chris had fun for sure.

Since Chris hadn't eaten since early morning, we stopped by the pizza place formerly known as York's pizza. He saw the waitress from dinner from a few days ago and gave her a belated happy face pin. He told her that he was part of her actress fan club. He asked for two pieces but didn't even finish one. Dad's keeping on eye on him and hoping that he isn't coming down with anything. Chris has already had the flu shot for this season.

Once back at the RMH, Chris read yet another letter from Aunt Cathy and then opened a box from an unknown party that sent him a new replacement GameBoy system. That was quite a surprise and Chris thinks that he knows who sent it and will be "pursuing an investigation of the mystery Samaritan." Dad let Chris stay at the RMH while he went go get some things that Cousin Bruce (alias Batman). Bruce has been storing equipment for us used for our trips to MSKCC (he's done this for almost four years). Before Dad leaves, he and Chris go over the emergency plans and then Dad tells the front desk what is going on. The two also have radios. As usual, the equipment pickup went well and we can't thank Cousin Bruce enough for letting it clutter up his home for so long. Thanks!

Chris did get to speak with his cousin Ryan tonight on the phone (while an aspect of his investigation of the mystery Samaritan). Chris and Ryan had a long chat. Chris has always liked Ryan (a senior in high school) a lot.

Chris had a bit of a "down time" tonight as he realized that his friend Greg and the rest of his Webelos patrol were going camping this weekend with a Boy Scout troop. Chris really wanted to go and it was one of the last things he had to do for his Arrow of Light award in Webelos scouts. He cheered up after he and Dad started working on a plan for the next opportunity.

Chris got a surprise call from a New York friend named Barbara. She volunteers quite a bit and one of the main places she works her magic is at the RMH. She normally takes care of the Moms but also works with a lot of the kids. She came over to talk to Chris and "tuck" him in tonight (her family lives nearby). She also brought a picture of her dog. The dog is also sponsoring Chris on his run tomorrow. Now that is some dog.

There have been quite a few people willing to sponsor Chris on his run. He is quite amazed and thankful (as the RMH is a good cause and to often his residence). Thanks!

Chris did wear his running shoes and at first, didn't care for them anymore. As the day wore on, he wore them in a little better and is now going to wear them on the run.

Medically, Chris had a few small problems. When he awoke, he said that his eyes hurt. Now that could be nothing or a symptom like he once had from his cancer. As it went away in a few minutes, we're not going to make much of it unless he should mention it again. He also looked "sickly" and was tired this afternoon. Amazingly, that seemed to go away when we began playing mega Monopoly. We just hope he stays real healthy for Monday's ordeal.

Joke of the day -- What did the dentist give to the marching band? A tuba toothpaste!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

Thursday, November 4, 2004 9:21 PM CST

Hi Everybuddy!

We went in thinking that today would be a sort of difficult but short day but it got "lengthened" for us. The main objective of the day was to meet with the surgeon who then flew off to a conference and for Chris to have an MRI scan. It had a very early start as the surgeon had a flight to make.

The surgeon thinks that this surgery is very doable. It is a common procedure but not one without risk. Dad made sure that Chris was paying attention for this discussion as last night, Chris asked what would happen if he didn't make it. Dad told him not to dwell on the risk but to look at all the positive things he has going for him, the two main being him being in good health (OK, he does have cancer) and he has a great surgeon. Chris seemed satisfied with the doctor's explanations. Chris will basically go in on Monday, get accessed and then go into surgery. The surgeon is going to remove most of the right side of his liver. Most of the vital functions of the liver occur in the left side and much is duplicated on the right side (OK, this is an oversimplified explanation of liver functionality at best). The doctor believes that he'll be back up to full capacity in about two months. Coincidentally, he and the oncology gang have just published a paper describing this sort of procedure and historical outcomes. Dad signed all of the necessary papers as we have a lot of confidence in this surgeon.

Once clear of that meeting, Chris and Dad headed up to the MRI suite for Chris' MRI. After removing anything metal, Chris and Dad entered the chamber and Chris was slid into the tunnel. He thinks that its a bit scary (its dark, noisy, and your very isolated and closed-in). You couldn't tell by looking at him and how he behaved though. He was in the tunnel for about an hour as they did quite a few studies with Chris having to hold his breath sometimes for as long as twenty-five seconds. It was also very cold in there. He also had to have his arms above his head for the whole procedure. The crew was very impressed and because he did so well, they didn't have to repeat any of the test.

Once clear of that test, we went back to a meeting with the surgical nurse practitioner who then prescribed a series of drugs that Chris has to start taking on Sunday. She also prescribed a new rash medicine. We were informed that they wanted to give Chris some platelets to see if there was any problems processing them and also that he needed a few boosts of G-CSF.

Chris broke free of that meeting only to blunder into his teacher. The two had a nice session and worked mostly on English but also on a bit of math. They spend about forty-five minutes together.

The guys then reported to the treatment area where they again drew a bunch of blood for a full battery of tests, get platelets, and then get a G-CSF shot. The blood draw went well but the G-CSF shot (that Dad gave) really must have stung Chris (but he handled it anyway). We tried numbing the area with freezy spray but it doesn't work that well for Chris. We going back to Emla cream for the next shot which should probably this weekend.

Dad then headed off to get Chris lunch (at McDonalds) and he bumped in to Chris' old teacher on the street. The two talked while Dad got Chris' lunch. She was looking pretty good and will come visit Chris once she finishes with some medication next week. He can't wait to see her.

His platelet transfusion went well save for some hives which he stoically bore since he couldn't receive any additional medication at the time. They cleared up just after the flush though.

The guys went to the hospital on a seemingly nice day and walked back in cool rain. The wind help it whip up under the umbrella Chris was carrying. It did wake him up though.

Once back at the RMH, Chris read a letter from Aunt Cathy and then moved on to playing a video game called Spyro. Dad let him play till he beat the game since he was so very close. Then it was time for the homework. Chris made short work of his homework: write about his favorite sport. He wrote about karate of course.

We got a call from Chris' Webelos den leader today. He said that the Scorpion patrol had Chris in their thoughts. The patrol is going on a camping trip with real boy scout. Chris really wanted to go on that trip, also. He appreciated the call and the sentiment.

To everyone who has signed on to sponsor on his run to raise money for the Ronald McDonald House: thanks. Chris and Dad broke out his running shoes today and he's wants to wear them tomorrow to get the feel for them again. The surgeon was quote leased to hear that Chris was making the run. He ran the New York Marathon two years ago to raise money for the hospital so he appreciates the effort.

Medically, Chris had no shoulder pain today. He still has that pesky rash and he did get a batch of hives during his platelet transfusion.

Joke of the day -- What does the winner of a race lose? Their breath!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

Wednesday, November 3, 2004 8:01 PM CST

Hi Everybuddy!

Chris went in early today as there was a little uncertainty as to how the mornings test and examinations were going to go. Things pretty much went as planned and by going in early, we did get to met with the teacher early and get into the midmorning class period.

The ultrasound was really interesting and very professional. For some reason, they no longer have a pediatric ultrasound test site and its all consolidated under the radiology department. The technician was very cordial and professional. Midway through the scan, the radiologist herself came in to help pick sound bites and "pictures." Dad knows that she is a radiologist as her name has appeared on numerous scan reports in the past. Chris was happy about it all as they did quite a bit, applied a bit of pressure here and there, but it didn't hurt. He gave both of them happy face pins (that they liked). The doctor has certainly earned hers by reading his scans for many years.

After the scan the guys went back to the Pediatric Day Hospital (PDH) and we linked up with his teacher. She said that she was impressed with his math skills but noted that he doesn't double check his work and makes careless mistakes (he's heard that before). Soon after class, Chris went to hang out in the playroom and there he linked up with an old antibody buddy from three years ago. The two guys used to do quite a bit together (Uno, video games, crafts, mischief) but today they weren't as close as they once were. Yet, they were very happy to see one another and his friend is also doing treatment at CHOP in Philadelphia.

We learned that Chris needed to get accessed for tomorrow's MRI (Dad finally got an answer on that one) and an oncologist wanted to examine him again (he's been talking to the Florida team for this last year). That all went well. As oft happens though, what should have been a quick day wasn't as Chris waited nearly three hours to get accessed. One of the Nb nurse practitioners came out coincidentally, saw him still waiting, and somehow made things happen.

The guys stopped by McDonalds for lunch (Chris is trying to win their Monopoly game) and then back to the RMH to rest a bit and then do homework. Once that was all done, the guys went on a walkabout to a distant bookstore where Chris got two new books about teenage spies. He's already read the first book in the series.

On the way back, they stopped off at "Chris'" pizza place where they've broadened their menu and now have a "sit-in" aspect of the restaurant. Chris liked the waitress and told Dad that she looked like a girl in a movie made in England. Well, she was from London as it turns out and she is "an actress" (as are many servers at restaurants around here). By the look on her face when Chris said that she looked like an actress, it made her feel better about things.

Once back at the RMH, Chris went down to the playroom for a spell where he finally beat every aspect of the Star Wars arcade game. After that, he went up to the dining room where on Mondays, jewelers come in and help the kids (and a lot of the Moms) make some jewelry using many of the beads that you see used in jewelry sold in stores.

After that, the guys went back to the room and got lucky with the phone and Chris got to speak with his friend Greg. Chris invited him to come over and said "Hey, its only ten thousand blocks away to walk!" Greg didn't buy it though. During that call, Grannylin and Granddad called and he soon got to check in on them. Soon after that call, Chris got to speak with Grandma and Grandpa.

A little update on Chris running this Saturday. He is now listed as contender "Becker, Christopher." So if you would like to sponsor Chris, it is possible in one of two ways. The first is to send a check to:

The Ronald McDonald House of New York
ATTN.: Whitney Joyce for Chris Becker
405 East 73rd Street
New York, New York 10021.

Please make the check payable to "Ronald McDonald House of New York/Kids Charity Fun Run." Please put Chris Becker in the remarks section of the check.

A second method is to go to the website at URL:
http://www.active.com/event_detail.cfm?event_id=1175658

At the bottom of the race information page is an area called "Online Donations" click where it says "Click here to donate to The Kids Charity Fun Run Donation Page!" At the top of that page (a new one will open) under the big red header line is a box called "View Fundraising Pages." Click on the down arrow and select "Becker, Christopher" and then follow the instructions. I still think that this method only permits donations via credit card.

Medically, Chris had no shoulder pain today and just one very short bout of stomach cramps.

Joke of the day -- What do you call a snowman with a tan? A puddle! This reminds Dad of a Chris tradition. Every time the guys come back to MSKCC, they bring a "tacky" Florida gift. One time it was a globe filled with water, a little carrot, and some floating coal called "A Florida Snowman" This time it was a snowman made out of sand. Its been flamingoes, alligators, and a lot of things. Well, to Chris' amazement, they save them. One assistant (like a scheduler of sorts) gained possession of the "sand snowman" and it dawned on her where all of the tacky Florida gifts on the shelf have been coming from. She's' been helpful and of course, she is now wearing a happy face pin. Some of the nurses still wear theirs, some from as long as four and a half years ago.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

http://www2.caringbridge.org/fl/chrisbecker/index.htm

Tuesday, November 2, 2004 7:48 PM CST

Hi Everybuddy!

Chris went into the hospital for another day NPO (with no breakfast or anything to drink). As it turned out, it was an unnecessary precaution. We did eventually build a testing schedule throughout the day and Chris can eat tomorrow but not on Thursday or Friday. As a matter of fact, he won't be able to eat or drink anything until dinner time on Friday. Talk about a day of stomach growling. Today was cool as Chris got to hang out in the playroom and then linkup with Simon's Mom. If all goes well, the two guys will be hanging out on Friday after Chris gets back from his late afternoon CT scan. Chris also got to "vote" in the election and even acted like a poll assistant. Like the rest of the nation, there is still no word about the outcome of the kid's vote.

We eventually learned that Chris will have an ultrasound tomorrow morning, a surgeon's exam on Thursday morning as well as an MRI, bone marrows on Friday morning and a CT scan in the late afternoon. Bummer! Chris isn't too happy about that as he won't be able to eat all day but he just wants to get on with things. The surgeon is of the same mind and wants to go for it on Monday. We do appreciate the efforts of the surgeon and oncologist to get things rescheduled to as soon as possible thus getting at the tumor (which never takes a break). If you're wondering, Mom intends to come up during the surgery or at least the recovery period as soon as we positively know that it is a go. The surgeon today called it a common but difficult surgery. He is going to remove the tumor and a good deal of Chris' liver that fortunately is regenerative. The surgery itself may not be curative but it may give some of the other options a chance of success.

When the guys went in, Chris' line had somehow managed to have some blood flow into it. We bumped into an old nurse of his who got Chris taken care of and flushed. He eventually got de-accessed as his line wasn't supposed to be needed for the rest of the week. Of course we learned otherwise after that deed was done. Oh well.

As he hadn't eaten anything, Dad let him pick the lunch spot again and today he picked the pizza parlor formerly known as York's. He ate well.

Once back at the RMH, Chris played a few games and then started working on what we believe will be his math homework. It is basically beginning geometry and he and Dad had some fun with it.

Chris got permission to run on this Saturday's fun run to raise money for the Ronald McDonald House in Manhattan (our home away from home). You can sponsor Chris in one of two ways. The first is to send a check to:

The Ronald McDonald House of New York
ATTN.: Whitney Joyce for Chris Becker
405 East 73rd Street
New York, New York 10021.

Please make the check payable to "Ronald McDonald House of New York/Kids Charity Fun Run." Please put Chris Becker in the remarks section of the check.

A second method is to go to the website at URL:
http://www.active.com/event_detail.cfm?event_id=1175658

At the bottom of the race information page is an area called "Online Donations" click where it says "Click here to donate to The Kids Charity Fun Run Donation Page!" At the top of that page (a new one will open) under the big red header line is a box called "View Fundraising Pages." Click on the down arrow and select "Becker, Christopher (it my say "Chris") and then follow the instructions. I think that this method only permits donations via credit card.

Chris was elated when he learned that our friend Jen will be cheering at the run on Saturday. She cheered for him during the race in 2002 and he always has a good time with her. Now he has two cool visits to look forward to this weekend.

Tonight Chris decided to throw some support to Aunt Pat and asked for KFC for dinner.

Medically, Chris had no shoulder pain today but he did have some stomach cramps early in the evening.

Joke of the day -- Did you hear about the fight in the fish shop last night? Two fish got battered!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

Monday, November 1, 2004 8:19 PM CST

Hi Everybuddy!

Chris was very busy today and the guys left for the hospital early. Much of his time was spent "waiting" or going around meeting with old "admirers" and happily there are many of those still here. The new "kid's hospital" part of Memorial Sloan-Kettering is wonderful and very kid-friendly finally. Many of the same nurses are still there and the new ones are very nice. They all made a big fuss over Chris' return.

The guys went in early with Chris NPO (he couldn't eat) as they were not sure that Chris had any tests scheduled (as this has been so spontaneous). He didn't, but we didn't get to learn this until about lunch time. Soon after they got there, Chris got his mediport accessed and they took a lot of blood for a CBC, full panel, and some of Dr. Chueng's "tests" (Chris has been a longtime MSKCC patient and they track things like HAMA and other research related things). There was a new nurse (to Chris) in the IV room and when she went to access him, Chris told her what size needle he normally gets and she let him tell of his preference for freezy spray and oh, by the way, Dad knows just how to do it. Unlike what normally occurs, she granted all of his reasonable requests. She made a big impression on Chris.

The important outcome of all the blood tests was that Chris' coagulation factors are good although his platelets dropped yet again. Chris' counts today were: white blood cells remained at 2.4 (normal: 4.0 - 12.0), hemoglobin rose to 12.4 (normal: 11.5 - 14.5), platelets dropped to 44 (normal: 150 - 450), while his ANC rose to 800 (normal: 1400 - 7400). That meant no transfusions were necessary today. The guys decided to keep the number of platelets needed to win a trip to Papa Johns at 60.

Just before lunch, Chris got called into the examination room where his longtime oncologist looked him over and said that he looked great. The guys mentioned Chris' shoulder pain (that he only had a little bout of this morning) and the doctor said that it was probably due to the tumor (a unanimous consensus so far). He left the pain medicines the same. The doctor is still working two new scans: an MRI and an ultrasound. He is willing to take the results of the bone marrow done in Tampa whose results he didn't think that he had received. Dad called back to the clinic to rectify that. The oncologist wants the operation done on either Monday or Tuesday. He also said that Chris could run on the Ronald McDonald's kid's 1/2 mile run Saturday so we'll be working to get him registered and to get instructions for anyone wanting to sponsor Chris on his run. The doctor also endorsed Chris' future treatment plan and options and said that they may have an option for him, too. He asked Chris to come back after lunch.

Since Chris hadn't eaten, Dad gave him the choice of places to go eat. Surprise! McDonalds again! After lunch they came back and hunkered down in the playroom. Chris met his new teacher and they'll be starting to work together on Wednesday (there is a teacher's meeting tomorrow). He and Dad played some video games (like Shreck 2 - very good) and a board game called "The Worst Case Scenario" that Chris did quite well with. Chris, Dad, and one of the longtime child life therapist here played Uno and she learned that Dad was serious when he warned her not to cut Chris any slack. We were released without definite knowledge about his future test schedule so well go in NPO again tomorrow on the off chance that one got scheduled.

Once back at the RMH, Chris played a few games and then started working on his weather observations project for school. He also tried to call his friend Greg (it was busy) but the two are doing fairly well staying in touch via e-mail. He also got a call from his favorite New York teacher who is now retired but unfortunately has got a bug that's keeping the two from getting together. He is waiting to get together with her. The guys also got a call from Simon's Mom (a New York friend) and we'll be meeting with her tomorrow and hopefully will setup a reunion for the two guys.

Medically, Chris had only a little shoulder pain in the morning and has been good throughout the day. You learn to live moment to moment.

Joke of the day -- How can you tell if a tree is a dogwood tree? By its bark!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

Sunday, October 31, 2004 9:16 PM CST

Hi Everybuddy!

Chris had an exciting day of which the high point was a visit from Uncle Brian who now resides and teaches on Staten Island. Dad let Chris sleep-in so when he awoke he was well rested. After he was up for a bit, Dad went off to get some cleaning supplies. When Dad does this without Chris, the two stay in contact over family radios. Chris' job was to make sure that his Play Station 2 was properly hooked up. It was.

Shortly after Dad got back, they went down to a staff breakfast (the RMH staff cooks). It was great and they ensured that Chris was well fed. We also bumped into another family from Tampa whom we see occasionally at the hospital. It was a nice reunion as this time they brought their nine year old son, too.

After returning from breakfast Chris called our friend Jen to see if she wanted to come to a Halloween party this evening. Unfortunately she couldn't but Uncle Brian did call in shortly after and offered to come on up and visit.

Chris then had an opportunity to go trick or treating. One of the longtime weekend workers here also works in a condo. He asked the families there if they'd sponsor a trick-or-treat session for the kids at the RMH. Most said that they would. Even though Chris originally said that he didn't want to go, the RMH guy (a many year friend and supporter) called Chris up and talked him into going. Chris went with the rest of the kids with the guy and some of the adult volunteers (without Dad) and had a great time trick-or-treating in a nice friendly environment. Chris went as a hobbit.

Once Chris got home, he played a few video games before playing his "Eye-toy" game. With the Eye-toy game, the player has to actually move, sort of like in aerobics. His favorite is the karate game and Chris really gets moving in an impressive way. After a bit, it was time to go to the local YMCA where they had put up a "haunted mansion." They had a special session for the RMH kids before they opened it up to the general public. Again Chris decided to go with the RMH crew (leaving Dad behind). This was good as Dad was waiting for Uncle Brian to arrive. Again, Chris had a really great time and he said that it wasn't so much scary as it was fun. He was really impressed by one teenager who acted like a haunted statue.

Chris got back just a few minutes before Dad and Uncle Brian got back from shopping. The two goofed off for a bit and Chris even showed Uncle Brian how to play "Eye-toy." Uncle Brian showed Chris some old pictures of Chris that he's collected over the years.

After a bit, the gang went down stairs to a chicken and rice dinner that was nice. Just after dinner, the gang went downstairs to the playroom that had been transformed into the RMH's own haunted mansion. Sadly, as it was a school night, both Uncle Brain and Chris had to get up early tomorrow so the evening ended early. We hope someday to visit Uncle Brian on Staten Island.

We've been checking in with our New York "family" and Chris' favorite teacher (now retired), called. Unfortunately, Chris was out but he did call back and leave her a happy message. He hopes to see her soon.

Chris was also happy to learn that the annual kid's half mile run to raise money for the Ronald McDonald House is next weekend. He has run it three times already and raised almost three thousand dollars for the RMH here in Manhattan. He wants to run again this year but we won't register to run until we know that its OK from the doctors. We don't want to do anything to jeopardize Chris' future treatment options. If he does run, we'll be letting people interested in sponsoring him know how to do so. The first time he did, he did with his friend Allie and it was the first time kids on treatment and staying at the RMH actually ran the race and raised money. It was a nice day for both of them and the families and since them/then, its become a tradition for those kids staying at the RMH and can run do so.

Dad did post some new pictures to Chris' website of his exploits in Philadelphia (where he is probably a wanted man). For some strange computer reason, some people can see the new pictures and some can't -- go figure!

Medically, Chris has had persistent low to mid grade (2-6 scale) pain since his MIBG on Friday. Sometimes he says that his shoulder "stings" inside rather than aches. He has been receiving codeine. Dad offered to take him into Urgent Care but Chris said that he could wait until the morning. He is a tough, brave kid.

Joke of the day -- Who won the skeleton beauty contest? No body.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

Saturday, October 30, 2004 9:32 PM CDT

Hi Everybuddy!

It was a very busy day for the guys as they had to move from Philadelphia to New York City. This meant that the guys had to repack everything, clean the room, pickup a rental car at the airport, pickup the luggage and checkout, drive to New York City, check-in, turn in the rental car, and then unpack the room. Mostly Chris stayed out of the way and read his new spy book. He helped when he could (like finding a vacuum to clean the room).

Most things went well and the guys learned some things. For some reason, the rental car company had the guys go to the airport to pickup a car when there were some available at the train station six blocks away. Yet, it was quite an adventure as the guys had to take the subway to the train station and then catch a special train to the airport. Chris thought that it was quite an adventure.

Checkout went well and the guys left town for the second part of the adventure. After stopping for lunch, the guys decided to head cross-country to show Chris that New Jersey isn't all what it looks like across from New York City. Chris learned that there might just be a reason they call it the Garden State. The trees very a variety of colors which Chris thought was great but he lamented that all the leaves would soon be falling to the ground and then the trees would look dead.

While driving through Staten Island, we called Uncle Brian but he wasn't home. The trip into the rest of the city wasn't bad and was easier then when driving the camper. Chris was eager to get to the Ronald McDonald House (RMH). Amazingly, when we got to the RMH, the staff and volunteers were all about the same people and they recognized Chris right away. Chris hasn't been back for twenty months.

The guys checked in to the room and then went to turn in the rental car (four blocks away). We then walked back to the RMH and Dad began to unpack while Chris went down to the community room for "casino night." He said that he played "21" and won a lot and he came back to the room with a ton of candy. There were eight small baskets full of candy (amongst other things) that were wrapped individually and he intends to give them to the child life therapists at the hospital on Monday (he doesn't eat much candy). The big deal occurred after the festivities when he and Dad walked to York's Pizza. Chris nearly had a heart attack when he didn't see the familiar York's Pizza logo on the canopy. Once he got to the door, he did see the old crew and the pizza. They remodeled and renamed the place so Chris' ambitions for pizza tonight were fulfilled.

We already got a call from one of our New York friends. New York isn't such a big city after all.

Medically, Chris has had a little shoulder pain but not enough for him to ask for any pain management medications.

Joke of the day -- Why did the witch need a computer. She needed a spell check.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

Saturday, October 30, 2004 5:58 AM CDT

Late entry from October 29, 2004:

Hi Everybuddy!

Chris was very busy today and the guys left for the hospital early. Their goals for leaving early was to arrive on time, search out "lost and found" locations, and see if an echocardiogram had been scheduled and if so, learn when. Chris and Dad walk through the beautiful University of Pennsylvania campus to get to the hospital. It is a shorter more desirable walk. Chris enjoys walking the curbs.

Chris learned that looking for lost things is often neither easy, fun, nor always successful and we are declaring his GameBoy SP officially "lost." Dad took him to several locations and let Chris ably do the talking -- all for naught.

We stopped by the oncology clinic to see if an echo had been scheduled and it wasn't going to be until the MIBG scan was completed and Dad and the doctor spoke. The people at nuclear medicine were great and Chris went into a new type of MIBG scanner made by Philips. He even got to watch a movie ("Agent Cody Banks"). Dad looked at the screen and because of the filters, everything was lit up (whew). Now Dad's is smart enough not to try and read into what he sees so he waited for a section to be re-scanned (upon the direction of the radiologist). During this period, they had different filters on and his liver was really lit up as was a spot a little to the left of his remaining kidney. It was a concern but it seemed to be out of place. It turns out that it was probably the end of Chris mediport tube that he was looking at. Although there is no preliminary report, the radiologist reported that it was "big" and seemingly restricted to the liver.

The guys went to the oncology clinic and after doing some paperwork, took a break for lunch. Upon return, the doctor took a look at Chris (who then fell asleep) while Dad and the doctor spoke. The doctor basically recommended moving on to Memorial Sloan-Kettering Cancer Center to let Dr. LaQuaglia remove the tumor. He basically has rarely recommended surgery in a relapse Nb patient but Chris presents a rare case. We did make a contingency should MSKCC determine that surgery wasn't possible after they scanned him and did yet more bone marrows -- Chris would come back and do ABT-751 in some manner or form. He will probably get that drug after the surgery while waiting for his vaccine to grow in Texas. All-in-all, it is what Mom and Dad anticipated that he recommend and we find it an acceptable recommendation. After drawing some blood for a CBC, the guys departed this fine hospital. Before leaving, Dad stopped by the financial people and they were very impressed and appreciative of the paperwork Mom had put together. Amazingly, the only person that wasn't really friendly to either Dad or Chris was the child life therapist. Other than her, everyone could have been transplanted from southern Minnesota, the friendliest people we encountered on our trip around the US years ago.

Oh, Chris' counts were interesting and pretty good save for his ANC which dropped to 700. His counts today were: white blood cells dropped to 2.4 (normal: 4.0 - 12.0), hemoglobin rose to 12.3 (normal: 11.5 - 14.5), platelets rose to 80 (normal: 150 - 450), while his ANC dropped to 700 (normal: 1400 - 7400). That meant no transfusions were necessary today. If his platelets continue to rise to 100, he may be able to enter the ABT-751 clinical trial. Chris' platelets earned him a trip to Papa John's pizza for dinner. They are now raising the number of platelets needed for Papa Johns up to 100.

On the way back to the RMH, the guys continued to reconnoiter the area around the university and found both a drugstore and a grocery. We're ready when we come back now. Chris also stopped at a bookstore and bought a new spy kids-like book that he says is very good.

Once back at the RMH, we continued coordinating for a departure for New York tomorrow. Dad spoke with both the social worker there and the oncologist who is going to begin getting Chris scheduled for an MRI, bone marrow, and other assorted tests. We also called all of the grandparents but unfortunately only got to speak with Grandma and Grandpa. Mom reserved a rental car for the trip to New York. Dad also began packing and getting the room cleaned. The guys then went to Papa Johns for dinner and Chris was disappointed as it tastes different from the Tampa version. Of course is taking some different medicine, too. Once back at the room, Greg returned a call to him that Chris had made earlier. We also got the first e-mail from one of Chris' teachers.

Medically, Chris has had shoulder pain ever since the MIBG scan. Although the doctor thinks it was caused by laying on the table there, Dad's had to give him two doses of Codeine. The doctor did examine Chris' rash and said that it appears to be improving.

Joke of the day -- What is the problem with twin witches? You can never tell which witch is which.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

Friday, October 29, 2004 2:28 PM CDT

Late entry from Thursday, October 28, 2004:

Hi Everybuddy!

Today showed why several different periodicals classify the Children's Hospital of Philadelphia the number one children's hospital in America -- the place is a well equipped hospital and everyone we've met thus far is kid (and parent) friendly. The guys didn't take advantage of the RMH's free breakfast as they leave for the hospital too early. Dad did get Chris something but he opted not to eat and instead asked to holdout for lunch at McDonalds. The guys went in early to get all of the paperwork done (as Chris hasn't been a patient here before). It went like a breeze as Dad had asked Mom to put together some registration/insurance in-processing paperwork that turned out to be super and the registration people were really impressed.

Much to the surprise of Chris and Dad, immediately after the paperwork was done, they called Chris back to get his mediport accessed. Now that was efficient as it wasn't supposed to happen until much later in the morning. Chris still had to wait for the arrival of the radioactive isotope as it doesn't get in until noon.

We also stopped by the oncology area just to see what, if anything, would be required for tomorrow. Coincidentally, we bumped into the team's nurse practitioner we've spoken with over the phone. Chris liked her. The guys then went to lunch (as McDonalds is actually in the hospital).

We showed up on time for the isotope injection for the MIBG and it went well although the special petcock they have to mix a flush with the isotope was acting up. While there, Chris' GameBoy fell out of his pocket, an indication of things to come. For some reason, the nuclear medicine team put in a certain dose of Heparin that is normally used at our hospital for temporary use in his line. Dad felt a little unsure about that so he took Chris over to the oncology clinic to ask an oncology nurse if that was OK for the evening. It wasn't and she readily injected the correct dose of Heparin. The guys then headed home.

Dad intentionally walked Chris quite a bit today, we even put in another half mile when we remembered that we had forgotten to pick up more SSKI and had to walk back to the hospital. Chris walked about three and a half miles today.

We did scope out some interesting shops (yet nothing too useful) and Chris did manage to get a new book on playing card games. Since the game "Hearts" is in it, he felt compelled to call Grandma and tell her that he was getting ready to play her in "Hearts." Since some people from a Lockheed subdivision had volunteers to bring in a dinner and some Halloween festivities, Chris wanted to stay in for dinner. It turned out that the festivities included about eight magicians so guess who was an assistant on numerous occasions? During the last act where they "made" him an astronaut, Chris had everyone in stitches with his ad-libs. Dad thought that the magician was going to offer him a job!

Once back at the room, Dad told Chris to get ready for bed and to charge his GameBoy. That's when Chris learned a tough lesson, always check behind yourself because somewhere in Philadelphia lies Chris' GameBoy (and not anywhere they he knows about). Since there are no TV's in the rooms here, it was a major source of recreation (and escape) for him.

Medically, Chris is doing quite well save for his rash. He and Dad do get the sniffles when outside and it is nice outside but about twenty-five degrees cooler than Tampa.

Joke of the day -- Why was the witch late? Because her broom over swept!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

Wednesday, October 27, 2004 8:26 PM CDT

Hi Everybuddy!

Well, the guys made it safely to Philadelphia. The day started with a flurry of last minute packing and a few dog piles. Genie is going to be missing them. OK, so are Chris and Dad. The whole family went to the airport and linked up with our friend Les who wanted to ensure that all of the ticketing effort was well coordinated. Thanks Les! Of course it was Les' and Chris' last chance to "spar" so they did. Chris even pretended to be Les when Les' wife called him on his cell phone.

For the first time since 9.11, Chris got to the airplane without having to go through an extensive security check. Dad of course was "randomly picked" (for about the tenth time) to go through the whole deal to include unloading all of the computers, getting wand, and etc., ect., etc. The flight went well with just a little turbulence. Chris wore his mask like a champ. The Philadelphia airport was easy enough to get through and so was getting a taxi.

The Ronald McDonald House here was the very first one ever built. Its centerpiece building is an old mansion near the University of Pennsylvania. Since its creation, two new wings have been added. Once in a room, the guys then went on a walkabout in search of the hospital which is only about nine blocks away. We blundered into a bookstore that Chris described as having only blah, blah, blah books (it was a university text book-like store). We eventually got to the hospital which is basically housed in two towers. At this time it looks a little confusing as things are divided into the two towers but the guys eventually reconnoitered where they had to go tomorrow. The highlights for tomorrow are getting inprocessed to the hospital, getting Chris' mediport accessed, and him being administered the radioactive isotope for his MIBG scan.

Medically, Chris' energy level and mood were great. Dad probably had him walk about three miles all-in-all. We're still working on that pesky rash though. As it is a bit chillier here than in Tampa, Chris had some sniffles after the big walkabout.

Joke of the day -- (thanks Mom) -- What is the result of a ghost blowing his nose? Boo- gers.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

Tuesday, October 26, 2004 10:09 PM CDT

Hi Everybuddy!

Today was d�j� vu all over again! The only constant is change. Chris went to school as usual, and performed his safety patrol duties as usual. Meanwhile, Dad worked on trying to create as close to a "seamless classroom" as we can for Chris by providing a pair of scanners for use by Chris' teachers so that he can be kept up to date on his schoolwork.

At home, Mom continued to work on the significant insurance and travel arrangements, based upon the information that we received late yesterday afternoon: that Chris and Dad were needed in Philadelphia until about November 6th. Thanks to a pair of very special "Chris buddies," the guys were able to obtain seats on a commercial flight to Philadelphia tomorrow. That was of tremendous relief, especially because it allowed us more time to properly plan, pack for, and (hopefully tomorrow) execute the plan for meeting Chris' needs.

Once again, things looked like they were beginning to line up relatively well. Although our local hospital was unable to accommodate the needed MIBG scan (only because the radioactive isotope needs to be ordered a week in advance, not because of lack of effort by the nuclear medicine department), Children's Hospital of Philadelphia (CHOP) appeared ready to be able to have it ready by the time Chris and Dad arrive. The same is true for the needed echocardiogram. So, by lunchtime, it appeared that things were getting back on track. Mom and Dad could then begin concentrating on packing for a 10 day trip to Philadelphia. Then, "it" happened. You know, change. Things began changing a little after 3 p.m. (of course).

That's when we received a telephone call from Chris' New York hospital, Memorial Sloan-Kettering Cancer Center. That hospital has a very well-respected surgeon who has a background as a liver expert, is a premier Neuroblastoma surgeon, is a great person, and who apparently recently reviewed Chris' recent medical history. He sent word that, barring unforeseen circumstances which may be revealed in the upcoming MIBG scan (namely whether there are any other tumors growing elsewhere), he believes that he can probably remove Chris' very large tumor. If so, his idea is that the surgery be followed immediately by radiation to the tumor site, including the portions of Chris' diaphragm which touch this tumor. We're not yet sure of the details since we have not yet actually spoken to this surgeon.

Well, although it is definitely welcome news to have a new option, it also raised lots of questions. For example: Should we continue to proceed to CHOP for evaluation and possible participation in a clinical trial? If so, which should come first, the clinical trial or the surgery? What did the Florida doctors think of the idea? Where was this idea a few months ago? etc., etc. After checking in for medical opinions from Florida, Philadelphia and New York, the general consensus seems to be cautious optimism toward the surgical option. There is more information that needs to be gathered to see whether the benefits of surgery outweigh the risks (the most important of which are whether to put Chris through a major surgical procedure, followed by radiation when it may not be curative if there is more Neuroblastoma elsewhere, and of course the idea of major surgery when Chris' platelet levels are perpetually low is always a concern).

If such soon-to-be-gathered-and-analyzed information still casts a favorable light on this new surgical option, then Chris' scenario may change. Right now, Chris and Dad will continue on with the plan to fly to Philadelphia tomorrow, and get the remaining tests done, then meet with the oncologist at CHOP for an initial consultation on Friday. If surgery still seems to be a "go," by Friday, it is possible that Chris and Dad may leave Philadelphia over the weekend and head for New York for a surgical consultation early next week. At that point, Chris may be scheduled for surgery and radiation, and remain in New York until he recovers, then return to Philadelphia to participate in the clinical trial. On the other hand, the doctors may decide that it is best to pursue the clinical trial first, then surgery. Or the surgery may fall by the wayside. For that matter, if Chris' platelet level falls significantly, we may have to switch to the other new drug on a compassionate basis or start over again. So, there really isn't anything set in stone yet (not even clay). But there were practical matters that needed to be considered today.

As a result of the possible surgical option, it now appears that Chris and Dad may not be able to return home within ten days, as planned as recently as lunchtime today. Of course, that news came after the flight arrangements had been made. We'll have to deal with that one after we get more solid information about what's going to happen for Chris. In addition, there are now three hospitals involved in making potential plans for Chris. That raised issues of medical coordination, as well as insurance and other logistical "challenges." At the moment, we have no idea whether the adventure that will begin tomorrow will last 10 days or two or more months. So, now bags are being packed for the potentially longer trip, which will likely involve colder weather.

For his part, Chris was very happy to hear about the surgical option. It is his hope that, once he recovers from that, he can get on with his life. He asked very relevant questions, like does this surgeon have experience with tumors in the liver. But on the whole, Chris was very positive about this new possibility, even though he knows that there must be some kind of follow-up treatment for some time to come in order to "mop up" disease that is likely lurking elsewhere.

Chris spent his day at school, then upon coming home, he did his homework and found games that he wanted to take with him. After a bit of a break, Chris went to his religious education class ("God school"), as usual. His teacher there also signed on to e-mailing him homework to keep up with the rest of his classmates. We all took a dinner break at a nearby restaurant. While waiting for the food to be delivered, Chris built a three level house made of drink coasters, 4 crayons and one menu. It really was impressive; had we had a camera with us, we would have snapped a photo of it. After dinner, we stopped to get a refill of happy face pins before tomorrow's new journey. While there, Chris finally decided what he wanted to be for Halloween: Frodo, a character from Lord of the Rings. Of course, at the moment, we have no idea where he will be trick-or-treating, but at least he's ready for it, wherever he may be on Sunday.

Medically, Chris' energy level and mood were good again today. In fact, he was feeling so well that it's difficult to believe that such a healthy-looking boy is carrying a large time-bomb around inside of him. For now, let's see what tomorrow brings.

Joke of the day -- (thanks Uncle Tom) -- What do you call a sick Roman emperor? Julius Sneezer.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, October 25, 2004 9:02 PM CDT

Hi Everybuddy!

Things sure started out ordinary enough for a Monday clinic day, but they got very hectic by late afternoon. Chris did the usual "morning stuff" and got to school to do his safety patrol duty. He and Dad then took off for the Tampa clinic, as usual. The clinic visit went fairly well and his blood counts were a surprise -- yeah platelets! His counts today were: white blood cells rose to 2.9 (normal: 4.0 - 12.0), hemoglobin dropped to 11.9 (normal: 11.5 - 14.5), platelets rose to 59 (normal: 150 - 450), while his ANC dropped to 1100 (normal: 1400 - 7400). That meant no transfusions were necessary today and Chris was cleared to go to school, but it also meant that now Chris has met the minimum platelet qualification to enter the CEP-701 clinical trial (hopefully he'll be able to hold that number or go higher). If his platelets somehow reach 100, he may be able to enter the ABT-751 clinical trial. Dad gave Chris a point on platelets: that despite it not quite being 60, he could have Papa John's pizza for dinner (a deal made some time ago).

After leaving the clinic, Chris and Dad went straight back to school, where Chris remained for the rest of the day. While Chris was at school, Mom and Dad were trying to get things coordinated to get the guys to Philadelphia sometime over the weekend. This included primarily medical insurance coordination as well as travel arrangements. Making all of that happen in one day is a challenge and was somewhat hectic in and of itself.

Occasionally a doctor or other medical or insurance person would call in. One such call was from Memorial Sloan-Kettering Cancer Center. After an extensive conversation, that doctor agreed to check with the exceptional surgeon there to determine whether surgery (of some sort) could be an option for Chris. He believed that the tumor burden would have to be reduced significantly first (meaning, the tumor has to shrink a lot) but he was going to check with one of the best surgeons in the business. Another call came in from an excellent physician from Chicago who spent a great deal of time answering questions concerning ABT-751. She acknowledged that Childrens Hospital of Philadelphia (CHOP) had more experience with the drug so we should be able to get good information to base a treatment decision while there. She spent a great deal of time answering many questions for which we have been looking for answers lately. Throughout this period, Mom and Dad were trying to line up transportation, staying at the Ronald McDonald House in Philadelphia, medical insurance and a myriad of other things (like Chris' winter clothing status). Whew, a full day!

Dad took a break to pick up Chris during the afternoon. He was pleased to review Chris' report card. He got a B in reading and writing and As in math, science, social studies, art, music, and physical education. Mom was also very happy with it. Not bad for a boy who misses a fair amount of school due to clinic or hospital visits. Somehow we managed to pull one of the two cell phones away from the coordination effort long enough for Chris to give the report card news to both sets of grandparents. He had long conversations with both parties. We're quite pleased with him as he always has a good attitude, tries hard, and does pretty well despite a plate filled with adversity.

Around 4 p.m., Dad had to pull Chris away from doing homework in order to help monitor the telephone lines. The insurance and travel coordination efforts required full use of our regular telephone line and both cell phones, as well as the fax machine. At one particular point in time, we had two lines on hold waiting for someone, while Mom talking to someone else on the third line. Chris helped by listening to the "wait music" while that line was "on hold." Chris didn't particularly care for the music, but he dutifully listened until someone answered that line on the other end. Then he passed the phone off to Mom, who was busy on another phone line (Dad was, too, on the third line). All's well that ends best.

Just when we thought that things were shaping up reasonably well for a possible Saturday departure, CHOP called at around 4 p.m. That's when we learned there are several monkeywrenches at play. Now Chris needs to report in up there by this Thursday in order to have all preliminary requirements completed (including physician consultation) prior to beginning treatment on Monday. If that wasn't enough of a surprise, we also learned that there are two additional tests that need to be done (and could have been done here, had we known about them with enough time to schedule them): an echocardiogram (not too difficult to schedule) and an MIBG scan (difficult to schedule). This information significantly cuts down the time between when we wanted to leave and when departure must take place. It seriously impacts on our options for travel. As a result, the guys may have to start heading to Philadelphia by car tomorrow. Travel arrangements are all the more convoluted because of the dependency on several variables, one of which whether our clinic can get the tests scheduled on very short notice. Actually, this overview barely captures the complexity of the day, and tomorrow has the potential of being just as difficult, maybe even more so. So, we'll do tomorrow what we do best: roll with it.

After we were pretty sure that all offices likely to call us today were closed for the day, we went out to get Chris a few more pairs of long pants (he almost always wears shorts down here), as well as two flatbed scanners. The scanners will be loaned to the school, to be placed in Chris' two teacher's classrooms. The teachers are to scan their worksheets and e-mail them to Chris so that he can stay up with his classmates as he travels. Dad will print the worksheets, Chris will do his work, then Dad will scan the filled in worksheets and e-mail them back to his teachers. We're trying to reduce the impact of Chris missing so much classroom time.

But for doing his homework and performing some "phone duty," Chris was able to play a video game and "dog-pile" with Genie of course. As a matter of fact, Chris wants to drive up to Philadelphia so he can play games all the way up. As driver, Dad is not so sure though.

Medically, Chris' energy level was good. Dad saw Chris carry back to the school office the traffic cones stacked three high. That probably weighed about twenty pounds, and he carried them about half the length of a football field. It's not bad exercise. Dad showed him a way to carry them over his shoulder. He still has the groin rash (which may be improving), and a scrape on his upper lip that makes him look like Charles Chaplin. The bruise inside his mouth is reducing and his lip is no longer swollen. Despite the relatively high platelet number of 59 (for healthy people, this is actually still a very low number since the normal range begins at 150, but for Chris, it's pretty good), Chris still has a few petechiae on his chest. But bruises are healing, including from his recent bone marrow aspirates.

Joke of the day -- (thanks Uncle Tom) -- What kinds of tests do they give witches? Hex-aminations.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, October 24, 2004 9:04 PM CDT

Hi Everybuddy!

Chris had a great day today, and he participated in something really big at church, although the significance of its meaning has not quite sunk in. After arising early and cheerfully, all three of us went to church, where Chris was confirmed during Mass. He chose the confirmation name of Michael (as in Michael the Archangel); we learned, coincidentally, that was the priest's confirmation choice, too. We didn't really know what to expect since Chris did not receive the usual training in advance of today's Confirmation, but what occurred was truly beautiful.

We belong to a very large parish, where the average attendance at each Mass is at or over 1000 people (and there are several Masses). So, while the priest was generally aware of Chris' circumstances, we wanted to make sure that he had more personalized information about Chris. So we provided the priest with Chris' "bio sheet" (originally created in order to place it on the outside of Chris' hospital room so that the doctors and nurses could read up on Chris before they come into the room and be able to carry on conversations with him about things that he thought were interesting. It helps to break the ice by making them feel more familiar with Chris and vice versa.) a few days ago. The priest clearly understood the significance of Chris' fight, and he realized that Chris was a great kid despite (and maybe because) of all the stuff he's been through. Before Mass, he told Chris that he hadn't realized just how brave Chris has been.

During Mass, the priest introduced Chris to the entire congregation, and used Chris and his struggles as examples throughout the service. During the Confirmation itself, he shared some interesting tidbits about Chris (such as the fact that Chris actually likes going to the hospital, despite all that he's been through, and that he's already had 34 cycles of chemotherapy + other treatments) in order to personalize him with everyone present. One that surprised us all was that he (along with Mom and Dad) were nearly the only ones in a church filled with about a thousand people, who have visited all fifty states. He shared Chris' likes as well as his nature, declaring Chris to be an excellent teacher, not through words but through action and his courage. After Chris was anointed and it was time for him to sit down again, Chris received a standing ovation from the congregation. Trying to add some levity, the priest pointed out that he had never received a standing ovation for one of his sermons before. It was a very beautiful ceremony, celebrated on an absolutely gorgeous day, and amplified by the fact that his friend Greg sat next to him throughout the whole ceremony. We did take some pictures and will post them on Chris' webpage after they are developed.

After church, the two boys got both families together for lunch at a nearby restaurant. They managed to clown around throughout the meal, although they were both still polite and tasteful. Both sets of parents have pretty much given up on trying to get the two to act "mature" while they are together (they are still young boys, after all). Greg came home with us, where the two of them played a video game very briefly, went swimming, and then went out on some "spy missions." Swimming was interesting at first as our little "polar bear" was reluctant to get fully wet even though he was wearing Mom's wetsuit (Greg was wearing his). He looked a lot like a penguin when he walked while wearing the wetsuit. The guys (Chris, Greg and Dad) invented a new game played with a ball and a raft oar unlike anything ever seen before. It kept them all active and warm, providing some good exercise.

While Greg was visiting, the phone calls started to come in for Chris: Grannylyn and Granddad, Grandma and Grandpa, Uncle Brian. Everyone was quite pleased with Chris and justifiably so. Chris had also received a call from our friend Les earlier in the morning and the two had their usual "go" at one another and set the stage for a new pizza eating contact. Chris told Les to bring plenty of Kleenex since Les would need them as he would be sitting in the loser box. Hmm.

Chris then opened up some wonderful Confirmation presents. To celebrate, we let Chris pick a place to eat tonight; he went for his favorite quesadilla restaurant. He and Dad have purchased the wherewithal to try and make some later this week (a first for us). For Chris, that was a very nice end to a perfect day (especially after the very imaginative LEGO game that he played with Mom at bedtime -- with some refinement, it could be turned into a home movie -- if he remembers the plot). We take each day one at a time.

Joke of the day -- (thanks Cate) -- What do baby ghosts wear? BOOties.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, October 23, 2004 9:46 PM CDT

Hi Everybuddy!

Chris awoke fairly early and headed straight for the video game that he and Uncle Jonathan had been working on throughout this week. After breakfast, he was joined by Uncle Jonathan (who slept in a bit), but they only played for about an hour or so. There were other things to do today.

We headed off toward the Museum of Science and Industry (MOSI). But Mom drove by the not-too-far-away Mel's Hot Dogs because Uncle Jonathan said that he had never been there before. He enjoyed it and found both Chris' and Uncle Brian's pictures on the wall. Chris didn't want to actually eat there this time though. That's because he has an increased interest in McDonald's right now due to its Monopoly Game. Chris is hoping to win something by collecting game pieces, and he can't collect game pieces unless he visits the restaurant (well, technically he can, through its webpage, but that's not as much fun as going to the restaurant).

Soon, we headed over to MOSI, where Chris and Mom both tried the trampoline event; both were strapped into a harness that was attached to large bungee cords, and both jumped as high as they dared. Chris however felt the harness straps cutting into his leg. It was uncomfortable enough that he asked to stop jumping earlier than time was up. So, we went into MOSI, where Chris almost immediately headed for the high wire bicycle. He rode it with a smile on his face. (Don't worry, the bike is suspended on a high wire, but there is a net under it, and it is counterbalanced with a very heavy weight under it. The point of the exhibit is to show that it is virtually impossible to fall off of the bike due to the counterbalance.) We walked around for a while, looking at various exhibits. Eventually we went to one of MOSI's science shows; this one was about crime scene investigation. Naturally, that one got Chris' attention. He volunteered several times to act as a helper. Among other things, Chris was the "criminal" was had to "steal" something that was under a clear plastic dome. Thus, his fingerprints were later found by another volunteer who dusted it for prints.

Finally, Chris got hungry, so we left for lunch -- at McDonalds of course. He liked going with the group of us since he was able to get all of the McDonald's Monopoly game pieces. No large prizes won yet, but he did get a piece for a free breakfast sandwich.

Speaking of Monopoly, Chris and Uncle Jonathan started a nearly five hour game of Monopoly when we got home. Chris the Tycoon was somehow able to purchase the high value (on which he eventually built what he called the first class hotels) and medium value (on which he built the "motels") real estate, along with all of the railroads and utility companies. At first, Chris was in danger because of his cash flow problems. However, Uncle Jonathan eventually ended up with the "no name motels" on the low value real estate. Because Uncle Jonathan kept having to pay the high rent, he struggled but somehow managed to keep that game going for a very long time. There was a lot of laughter going on during that game. After dinner, Chris got cleaned up and ready for story time and bed while Uncle Jonathan finished watching the movie, "Pirates of the Caribbean."

Later, Chris received some distressing misinformation, which prevented him from being able to sleep. After a long talk with Mom, he eventually calmed down.

Joke of the day -- (thanks Uncle Tom) -- Why was the broom late? It over-swept.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, October 22, 2004 10:10 PM CDT

Hi Everybuddy!

It was a long morning at the clinic as for some reason, the doctor kept Chris waiting for about forty minutes. It might have been because she was the bearer of poor news: Chris' tumor had continued to grow even while he was on treatment, and is now fairly the size of a baseball. We're going to be reviewing the previous test results to learn if it grew at a slower pace, but the fact of the matter is that it grew. Not only were the CT scan test results already back, but also the bone marrow aspirates. Good news there: no disease noted in the bone marrow and greater cellular activity (about 50 to 60% now, as compared with the 10 - 30% last time).

After wallowing in self pity for three minutes, Chris and Dad went through the drill of "ok, let's look at what is working." A lot of things are still working well for Chris, and we will try to capitalize on them. Dad and the doctor put in place a scheme to gather more information about the two experimental drugs that we're considering and both acknowledged that some sort of chemo remains a possibility should the two new drugs be unavailable to Chris for whatever reason. Later in the afternoon, Mom learned that both drugs were actually available at CHOP (Children's Hospital of Philadelphia). We hope that will make decision-making a little better since the oncologists there ought to be able to compare the pros and cons of both drugs (as opposed to us trying to do it based upon information coming from two different institutions) when we get up to Philadelphia soon. Dad intends to discuss the idea of a "liver team" with those doctors too. So, despite today's bad news, we've actually had worse days. Dad broke the news to both sets of grandparents.

Today started out normal enough: Chris performed his safety patrol duty at school and Dad signed him out. Dad thinks that there is almost like a friendly lottery to see if Chris will actually make it back from being signed out each day. (Actually, his teachers are very supportive of Chris' needs.) The guys then headed to the clinic and actually stayed longer than they thought that they would; we didn't actually expect any test results back yet. Chris got back to school in enough time to attend a bit of
class, ride in a very long Hummer stretch limousine (although he told Uncle Jonathan that there was a hot tub in it -- there wasn't), get a free lunch at McDonalds, and see a magic show. As for the latter, it's almost too bad that he made it to the show since Chris tripped over someone's feet as he walked back to class. Now he has a skinned knee and elbow, as well as an abrasion on his upper lip. In fact his upper lip is swollen (as is a little bit of his gum, directly under the lip) and there is a large bruise on the underside of it. (It should look really nice for his Confirmation at church on Sunday.) He feels ok though, although the lip abrasion was irritating him more than the bone marrow sites.

Although the guys stayed at the clinic longer than they thought they would this morning, the "nurse part" went really well. Amazingly, his platelets climbed again and are now 39 (from a finger poke) and 40 from an arm poke. He's getting close to meeting the minimum standard for the CEP-701 trial. There was no need for a transfusion and Chris was cleared to go to school. His counts today were: white blood cells rose to 2.7 (normal: 4.0 - 12.0), hemoglobin rose to 11.9 (normal: 11.5 - 14.5), platelets rose to 39 (normal: 150 - 450), while his ANC rose to 1200 (normal: 1400 - 7400). The counts are still a bit surprising but under the "ok, let's look at what is working" category, that's ok by us. While there, Chris sold yet more cookie dough for his fifth grade fund raiser. Dad also dropped off an idea for the nurses to consider: a "nurses report" that Dad hopes they'll "adopt." It provides a way for nurses to provide their own perspective of Chris' clinical "things," like what size needle is best used for his mediport, how they normally pre-medicate him for transfusions and a lot of things they know about Chris that would be useful to a nurse at another hospital. Dad frequently encounters these types of questions every time we go to a new hospital (and sometimes into a different part of our own hospital). The head nurse sort of liked the idea and said that she would review the paper. Dad also picked up a bottle of "freezy" spray, just in case it is not available at CHOP. Chris also wants to use it for his G-CSF shots, should he need them again.

After leaving the clinic, Chris wanted to head right for school to ensure that he didn't miss his limo ride. Chris was surprised that a friend of his and his little brother had also won a trip in the limo, so life was good. Dad thought that the limo had a bad smell and didn't care for riding sideways, but the five boys liked it and thought that the interior "awesome." They noticed that there was no video game machine in there and they were sorry that no one had thought to bring a DVD movie to watch. They had a Happy meal at McDonalds. As one of the high selling people, Chris also was invited to attend a "cool" magic show, after which he tripped (and probably used up many of his own-grown platelets).

Mom squeezed some time in today to begin mobilizing a willing insurance team into action in preparation for treatments at CHOP. Again they and our wonder medical secretary at our clinic have begun to get the right paperwork flowing to the places. It is a monumental effort to make this happen relatively smoothly.

The guys got home a little before Uncle Jonathan, who was out and about today. Once the two got together, some serious video game activity began in earnest.

Medically, Chris was great and was over yesterday's bouts of diarrhea. His rash is still present but the doctor thought that it was resolving so we're to continue with his present medication. He does look a little battle worn with scraps on one knee and an abrasion on his upper lip (and a bruise inside his mouth). Yup, there were a lot of little things that went wrong today.

A day like today is not a lot of fun and Chris is sophisticated enough to understand the consequences. He doesn't dwell on them and instead helps look at what can be done to get things back in line. Dad let the school's psychologist know about the new bad news, but also informed her that, at least for now, he was good with it all. He really is tired of all this but definitely wants to keep fighting and having fun. Today was a prime example of the dichotomy that he and Greg portrayed a couple of weekends ago, when he and Greg were battling a balloon back and forth while Mom read a very serious letter about what its like to be a cancer kid. To have it all work, the kid has just got to let the bad stuff all go and focus on getting better, being normal, and having fun.

Joke of the day -- (thanks Uncle Tom) -- What did the Sheriff of Nottingham say when Robin fired at him? That was an arrow escape.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, October 22, 2004 5:21 AM CDT

Late entry from Thursday, October 21, 2004:

Hi Everybuddy!

It was another hectic day for Chris, one that included attending school (twice) and trips across the bay to the hospital. He was happy that everything at the hospital went quite well. His CT scan was done in record time. We hope to hear some results either tomorrow morning or by Monday.

The day started out with Chris having to drink nasty-tasting contrast before going to perform his safety patrol duty at school. There he learned that his post had been changed. He is now stationed at the front drop-off point. Now he is responsible for putting out about fifteen traffic cones; he learned today that those cones are not exactly lightweight. Moving the cones will be good exercise for him twice a day (before and after school). Meanwhile Dad headed for the classrooms while Chris was on duty and tried to pickup homework assignments that could be done at the hospital later in the morning. He also picked up another order form for the fifth grade class trip fund raiser. Chris attended class for about an hour this morning before he and Dad left for the hospital.

Chris and Dad have made this trip all too often; they knew that things weren't going so well on the interstate, so the guys took to the back roads and made it to the bridge in good time. When the guys arrived at the hospital, things fell into place pretty readily. Just as they were breaking out the homework handouts to make up for missing so much of class yesterday, Chris was called to report to the CT scanner. Yet again, there was a new crew on duty, and for some reason, they took an instant liking to Chris. He of course, handed out some happy face pins. Chris asked for a Zofran since his stomach was a little queasy, and he knew that he was going to get an infusion of contrast at some point during the scan (he had cramps and diarrhea just after arriving at the hospital -- maybe from the other doses of contrast he had already drank). The scan of the chest, abdomen, and pelvis went quickly. Before they knew it, Chris was disconnected and his mediport was deaccessed. The guys were surprised at how fast things went.

On the way back, Chris had two requests: to stop at "his" bookstore (where he got a new book) and to go through the drive-through at McDonalds (for the second day in a row, he hadn't had anything to eat because of the scan). The guys still were able to return to school well before the expected time of arrival. Chris attended two and half hours more of school.

After school, Chris took a short break and then started in on his homework. He wanted to get it finished so he could start gaming with Uncle Jonathan -- which they did.

Medically, Chris' energy level was good today and doesn't seem to be much of an issue anymore. He will get a workout moving traffic cones back and forth, which he said were "heavy." We like the idea of a workout for him. We got an e-mail from a Chicago hospital indicating that another new drug in which we are interested (ABT-751) might be available for Chris, but he'll have to go up there in order to be examined to see whether he'll be qualified for it. We now have a few treatment options, and a decision to make, but very little useful information at this point. In other news, Chris' pressure bandages were removed from around his four bone marrow aspirate sites (front and back of both hips). It was slow going to remove those bandages since the adhesive was so strong, but Chris put up with it (with a few grumbles and a couple of tears). Three out of the four sites looked pretty good, but there is a pretty good sized dark purple bruise on the back of his right hip. That is probably the result of not having enough platelets to stop the bleeding fast enough to prevent the bleeding after the procedure. As long as nobody touches him at those sites, which are still a little tender, Chris feels fine. There are some scattered petechiae on his body, mostly on his chest and upper arms.

Joke of the day -- (thanks Uncle Tom) -- Points to Ponder -- Should vegetarians eat animal crackers?

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, October 20, 2004 8:41 PM CDT

Hi Everybuddy!

It was a really long clinic day for Chris and one that was wrought with surprises. Today was the day of his bone marrow aspirates and biopsies, so both Dad and Chris knew that they'd be at the clinic for a bit. It turned into a whole day affair.

The day started out normal enough: Chris performed his safety patrol duty at school while Dad consulted with his teacher and signed Chris out of class. There was a hope that Chris could get his picture taken, but it was not meant to be (maybe in November during the makeup session). The guys stayed to watch the morning show before heading to the clinic.

Because Chris was going to go into surgery today, he had nothing to eat or drink this morning. He was eager to get to the clinic and get done with things there. Even though a nurse had told Mom that Chris could report to the clinic later in the morning, Dad wanted the results of the blood test (especially Chris' platelet count) before signing a consent form to perform a procedure to dig into his hips. Going early to the clinic could have enabled the staff there to order and transfuse the platelets, if needed, before the bone marrow procedure. After just little bit of "resistance" (not much), the oncologist who would be performing the procedure looked him over. By then, the blood test results were in. Surprisingly his platelets had "soared" from 33 to 36. That's still a risky number (the low end of "normal" is 150) but given Chris' history, it was acceptable. The doctor's previous concern about avoiding a platelet transfusion if possible was to avoid the possibility of jeopardizing his entrance into the CEP-701 clinical trial. As it turned out, there was no need for a transfusion and Chris was cleared for his bone marrow aspirate and biopsies.

His counts today were: white blood cells dropped to 2.5 (normal: 4.0 - 12.0), hemoglobin dropped to 11.0 (normal: 11.5 - 14.5), platelets soared to 36 (normal: 150 - 450), while his ANC dropped to 1100 (normal: 1400 - 7400). The counts are a bit of a surprise since, with Chris, the platelet level is normally the first thing to fall. Yet, today, it crept all the way up to 36. Go figure.

Despite arriving early at the clinic, the guys ended up staying there all day. Chris had only thirty minutes of "down time" (not enough to sneak back to school for a picture). His mediport was accessed today by a new but proven oncology nurse. This was to be his first surprise. For some reason, while moving with the needle, she completely missed Chris' mediport and the area to which Dad had applied the "freezy spray" (a local anesthetic). It sort of hurt Chris but he was very brave. She quickly realized her mistake and apologized profusely. She was so flustered that she set up a new tray and called for one of the longtime experienced nurse. When Louise came in, Dad asked Chris if it would be ok if the first nurse came back and accessed his mediport. Dad (and the other nurse) looked at Dad for a moment; Dad explained to Chris that the first nurse's confidence might have been damaged and she needed to do it right (kind of like getting-back-on-the-horse-after-falling kind of thing). Chris and Dad have done that quite a bit in teaching things to one another, so Chris said "ok." That was a pleasant surprise to our usual nurse, who was quite pleased with Chris. The first nurse was also a little surprised when she learned that Chris wanted her to try again. This time she did a great job. Chris' mediport is in a weird place but no one has ever missed it before. However Chris had her before with good results. Dad also wanted to make sure that Chris knew that she knew how to do her job since he'll have her take care of him again sometime soon.

After the doctor examined him, Chris spent about thirty minutes goofing off with a cancer center volunteer who comes to the clinic each Monday. Chris thinks that she's great; they go at each other all of the time, much to the amusement of the rest of the people in the waiting room. There was also a volunteer from the university (a pre-med type) who Chris thought was great (he gave her a happy face pin).

Chris' class is now selling Otis Spunkmeyer cookie products in order to raise money for the fifth grade trips. The guys brought his catalog along in the hopes of selling a couple of cans of frozen cookie dough. He must have struck at a weak moment in that clinic because he actually ran out of room on the order form! Everyone likes Chris and the school is selling some first-rate products. Chris was quite surprised and happy.

The guys eventually moved into the "SurgiKid" waiting area, from which they were soon moved into the flow for surgery. Chris received an adult-sized gown to wear (by choice); he and Dad have a special way of tying it that keeps Chris warm (and as modest as one can be wearing a hospital gown). The anesthesiologist was impressed. The anesthesiologist was new to Chris, who had never had him before. He supplied Chris with the second surprise of the day by intubating him (he put a tube down his throat to keep the airway open). That was never done before during any of the bone marrow procedures either here or up at Memorial Sloan-Kettering Cancer Center, so it was definitely a surprise. It was discussed with Dad before the procedure, but only as a possibility. Needless to say, Chris was asleep when they did it, but he knew that something had happened when he awoke in the recovery room. The rest of the clinic visit went well. Chris' mediport was heperonized so that it can be used during tomorrow's CT scan.

After leaving the clinic, Chris asked Dad if they could go to McDonalds for "breakfast" (at 3:00 p.m.). Dad approved and also told Chris that he could pick dinner. Since school was already out, they went straight back home where Chris linked up with Uncle Jonathan, who had already "warmed up" a video game for Chris. The two stayed with the game all the way to dinner time (no surprise there -- pizza). Surprisingly, Chris could only eat two slices of pizza.

Medically, Chris' energy level was good today and he was alert all day. Although not discussed with the doctor today, his rash seems to have spread a bit. That will be an issue to be discussed on Friday. It was a rough medical day for him but Chris handled it very well.

Joke of the day -- (thanks Uncle Tom) -- Points to Ponder -- Why doesn't glue stick to the inside of the bottle?

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, October 19, 2004 8:48 PM CDT

Hi Everybuddy!

It was a nice day for Chris in that "terrible Tuesday" wasn't as hectic or terrible as it can be. He was actually able to finish his homework at school, although he had some corrections to make after the "parent check." School went well, but for the fact that for some reason, his class didn't get its picture taken today. Now it appears that it is to take place tomorrow. As happens all too frequently, Chris is expected to be at the clinic most of the day and is unlikely to be able to get his picture taken. It's not that big of a deal for his individual photo since there is a makeup date in November, but it is a problem for the class' group photo. Dad will check with school personnel tomorrow morning to see whether there is any possibility of making this happen. Chris is slated for a bone marrow aspirate tomorrow.

Chris had a normal day at school from start to finish. When Dad went to pick him up this afternoon, he announced that he had already finished his homework, and then asked if Uncle Jonathan had arrived, and oh, could he play with him? Well, things worked out pretty well in that regard. Uncle Jonathan had arrived while Chris was at school, so he was ready to play when Chris got home. He was a bit of a surprise to Genie, who had been off at the doggie beauty parlor when he arrived. She stuck to him like glue for quite a while though, having become good buddies right away. Chris and Uncle Jonathan hung out in front of the video game machine for about an hour, with Uncle Jonathan coaching Chris through a rather complicated game process.

Chris eventually had to leave though, because today is Tuesday: religious education followed by Cub Scouts. Church school went well for Chris; his teacher abandoned her "seating plan" from last week, w which meant that Chris and Greg could sit together. He and Greg volunteered to collect all of the needed missals from the church for the class.

When Dad picked Chris up afterwards, he had a McDonalds meal waiting for Chris, who ate it on the way to the Scout meeting. Tonight, Dad was the instructor, and he began the preparation for the scouts to earn the Arrow of Light award. The Arrow of Light is the highest award in Cub Scouts and prepares the scout to become a tenderfoot scout when he joins a Boy Scout troop. As it is a challenging award to earn, it underscores that there is going to be a change in becoming a Boy Scout rather than a Cub Scout. The boys paid very close attention tonight.

Once home for the night, Chris helped put out the trash, then sat down with Mom while she checked his homework. After taking his medicine, he started his usual "nighttime stuff." He was a little disappointed that he couldn't hang out with Uncle Jonathan more tonight, but it is a school night.

While Chris and Dad were away, Mom received a telephone call from a PTA representative tonight. It appears that, thanks to your help, Chris was one of the top ten fund-raisers for his school. To all those who bought something from him either in person or via the Internet -- thanks! This distinction means that Chris has been invited to ride in a Hummer limousine at lunchtime on Friday. Hopefully he won't be doing something medical at the time, because Chris is looking forward to this experience.

Medically, Chris' energy level was good today; he was alert all day. He still has the groin rash but no additional problems. The medical team were able to pull off a surprise move: they scheduled Chris for a bone marrow biopsy and aspirate tomorrow. As is oft the case, our medical insurance friends obviously did a great job in getting the authorizations to the right place on time despite the short notice. Thanks!

Joke of the day -- (thanks Uncle Tom) -- Points to Ponder: If the cops arrest a mime, do they tell him he has the right to remain silent?

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, October 18, 2004 8:54 PM CDT

Hi Everybuddy!

Tomorrow is a big day as Uncle Jonathan is slated to arrive for a visit. It will also be Chris' school picture day, along with the usual "Terrible Tuesday" activities. Surprisingly, picture day is not happening on a clinic day, so Chris may even be able to get into his class picture.

Well, Chris' recent knack for waking up early failed today. It took the combined efforts of Dad, Genie, and Mom to get him going. Still, he
managed to get up and get going in enough time to make it to his safety patrol post. After patrol, the guys took off for the Tampa Clinic. The clinic visit went fairly well and his blood counts were a pleasant surprise since they rose or remained the same. His counts today were: white blood cells rose to 2.6 (normal: 4.0 - 12.0), hemoglobin rose to 12.0 (normal: 11.5 - 14.5), platelets remained at 33 (normal: 150 - 450), while his ANC rose to 1300 (normal: 1400 - 7400). That meant no transfusions were necessary today and Chris was cleared to go to school. We can only hope that the chemo is being nice to his blood counts and mean to his cancer. We should know within the next ten days; the clinic has begun to start scheduling next week's scans and tests, probably including another bone marrow aspirate.

After leaving the clinic, Chris and Dad went straight back to school, where Chris remained for the remainder of the school day. After school, the guys hung around for about fifteen minutes while Dad worked on yet another problem for the librarian. Chris still is trying to read all of the magazines. Once home, Chris got a break from his restriction from video gaming, having earned back an hour and a half of play. He goofed off a bit with Genie and when Dad checked on him, the two were sitting beside one another, doing his homework. Chris said that she helped. Since a lot of the "stuff" Chris had to make up and write about was concerning dogs, maybe she did! Chris was temporarily saved from homework by a phone call from Grannylyn and Granddad.

Medically, Chris' energy level was good today and he was alert all day, although it took a few games of Uno to get him past the waiting room-induced sleepiness (and that's tough)! He still has the rash but no additional problems.

Joke of the day -- (thanks Uncle Tom) -- Points to Ponder: If you throw a cat out a car window, does it become kitty litter?

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, October 17, 2004 9:38 PM CDT

Hi Everybuddy!

Well, Chris has started his Uncle Jonathan countdown: he'll be here in less than 2 days. Chris has some multiplayer games, which makes it easier for them to play together.

Chris was an early bird again this morning. He didn't mention any cramps today, but he was awake when Dad went to walk Genie this morning. We doubt that this behavior would actually carry over to a school day though -- we can only hope. He pretty much devoured his waffle and sausages today.

Chris was eager to get to church today, although it was probably mostly due to the fact that once it was over, he knew that Mom and he would pick up Greg and then move on to Chuck E. Cheese. Although sometimes Chris has to get up and visit the bathroom at church, especially after chemo cycles, today he did not have such troubles. Chris was right -- afterwards, Mom took him over to meet Greg, then all three of them went to Chuck E. Cheese for lunch and games. The guys really get along well and have been saving their tickets for at least six months. They hit the jackpot twice today on different games, and wound up with nearly 700 tickets between the two of them by the end of today alone. Because some of their previous ticket vouchers were rapidly deteriorating, they decided to turn in about 1500 of them for a magnetic mobile of two dolphins that "jump" out of the water and strike a ball (they actually just swing back and forth but portray that image). They still have their nearly 700 from today still available for future fun. Of all the Chuck E. Cheese prizes, this one does have a modicum of taste. They like it, so that's all that's important. In fact they like it so much that they named the dolphins, Dick and Jane. All that fun increased their appetites; both boy ate more than their usual amount of pizza.

After food, fun and games, all three came home and linked up with Dad. The two boys pretty much dwelled in front of the TV playing a video game. They didn't go swimming because Greg thought the water was too cold, even though Dad had the pool ready for them and the weather was absolutely beautiful. Chris hopes that Uncle Jonathan doesn't mind a bit of cool water because Chris is still interested in a swim now and again; he does not yet accept the pool as being closed for the season.

Medically, Chris had one small bout of stomach cramps and another bout of brief but moderately intense pain under his sternum. Both went away after a bit. He also lost yet another tooth. This one he wiggled out while watching a movie "The Kid"' with Mom and Dad. This one was much less messy than the last one thankfully. It is his third tooth in three weeks. This tooth was "ground down" to the point that it has no enamel at all on its chewing surface since Chris apparently grinds his teeth at night. Mom doesn't know how Chris has been able to eat and drink without pain given the condition of that tooth. In fact, virtually every tooth that he has lost since he started treatment so long ago has been in bad shape for one reason or another. We can only hope that his permanent "adult" teeth will be stronger. Researchers are only now beginning to seriously study the long-term dental effects of chemo, radiation, etc., that young cancer patients have to endure while their teeth are under development; it is suspected that such harsh treatments are responsible for thin enamel, shortened root systems, etc., so we'll just have to see what happens with Chris. In other medical news, Chris still has the groin rash but at least it's not itchy.

Joke of the day -- (thanks Cate) -- What do goblins drink when they're hot and thirsty on Halloween? Ghoul-Aid

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, October 16, 2004 9:29 PM CDT

Hi Everybuddy!

When Dad went to walk Genie early this morning, he was somewhat surprised to find Chris awake and playing a video game. Chris later said that he awoke around 5:00 a.m. with stomach cramps and just couldn't get back to sleep. Later this evening, he said that he hopes that he never does that again since he was very tired and his eyelids were getting "sticky."

Chris was really into video games this morning. He has several new favorite games, including the most recent one, "Tak 2," which he just received for courage "above and beyond." Dad was working outside in the backyard. When he came back in the house at one point, he was surprised to see Chris playing yet another video game. When asked, Chris said that he just needed to take a break (hmm, some break). Chris ran out to the back yard one time to tell Dad that either a policeman or postman was at the front door. It turned out to be a postal worker and Dad missed her. Coincidentally, while Dad was out in the front yard, she drove by and pulled over to get him get sign for a document. Dad then told Chris that cops don't normally cruise around in red, white, and blue trucks with eagles on the side. Chris laughed and said, "Oh yeah."

Chris called over to Greg's home to see if he had returned from his soccer game (he hadn't), so Dad had him take a break for a lunch of ham, cinnamon apples and some chips. Even though Chris had eaten some waffles and sausage earlier, he was hungry. Soon after he finished, Greg called and they made plans to get together a half hour later. Chris was quite happy since he knew that he and Dad were about to go get a replacement battery for the camper (for the camper part). It had lasted six years in the Florida heat, but it wasn't what it once was.

Chris had a great time with Greg, and it comes as no small wonder that a lot of it was centered on the new game (Greg loves games, too). It is a multiplayer game (watch out Uncle Jonathan!). Chris was also quite pleased to learn that Greg had scored all three of his teams goals (and they won). The boys did go out and play with the neighbor's kids, who range from 3 to 8 years old. Chris was impressed by the oldest daughter since she was quite mature and took good care of the smaller kids. Coincidentally, Dad had noticed the same thing earlier when he had been out front talking to Greg's Dad.

Dad picked up Chris just as Mom called in to tell Dad that she had completed her Army work today. We decided to go out to eat so that we could also do some shopping. We ended up going to Chris' "favorite" mall. We bought a few things and headed toward the food court where Chris had some pizza (surprise)! He also said that he was cold (now that was a surprise since he normally loves the cold) and was so tired that he didn't even want to visit either the toy store or bookstore (he later tried to change his mind on the bookstore). We didn't stop, and it was just as well. When Chris got home, he quickly took his medicine, got cleaned up, and went to bed (by his own request). We hope that he can sleep in, as usual tomorrow.

Medically, Chris' energy level was good today and he was alert all day. He still has the rash and had stomach cramps in the early morning and afternoon (the later preceded a bout of diarrhea).

Joke of the day -- What do you get when you put a snowman in a haunted house? Ice screams.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, October 15, 2004 8:22 PM CDT

Hi Everybuddy!

Chris had quite a fairly normal day. The clinic visit went fairly well and his blood counts were a pleasant surprise since they rose or remained the same. His counts today were: white blood cells rose to 2.0 (normal: 4.0 - 12.0), hemoglobin rose to 11.0 (normal: 11.5 - 14.5), platelets rose to 33 (normal: 150 - 450), while his ANC rose to 1200 (normal: 1400 - 7400). That meant no transfusions were necessary today and Chris was cleared to go to school. He completed the last dose of a full cycle of chemo last night. When Dad checked on the status of future possible actions, he learned that the doctor had forgotten to let the staff know to schedule the CT scan of Chris' liver area in order to determine whether this cycle of Thalidomide and Etoposide have had any favorable effect against Chris' tumor. The nurse is working on clarifying the requirement. Hopefully, it worked to reduce the tumor load and contain the extent of disease; maybe low dose chemo of some sort could remain as a treatment option. The goal is to get Chris into a midrange treatment, possibly do some sort of activity (e.g., something like surgery or radiation) to remove sanctuary areas (especially in the liver) and then transition to a long-term treatment option, such as that of the Texas vaccine.

After leaving the clinic, Chris and Dad went straight back to school. Chris had missed math class again. After school, the guys hung around for about fifteen minutes while Dad worked on a problem for the librarian. Chris never minds hanging out in the library since he gets a chance to read its magazines. Enroute home, Chris tried to call Greg but didn't get through. Greg has soccer practice today.

Once home, Chris goofed off a bit with Genie and then began playing a new video game. He also spoke with Grandma and Grandpa.

Medically, Chris' energy level was good today and he was alert all day. He still has the rash but no additional problems. Dad received a telephone call from the Philadelphia hospital; they believe that Chris' next scans and other tests can be done in Florida. There may be one "hitch" with Chris getting into the CEP-701 clinical trial: apparently the study requires the entrant to have a platelet level of "50" or higher to enroll into the trial. That might be very problematic for Chris.

Joke of the day -- When was King Arthur's army too tired to fight? When there were a lot of sleepless knights.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, October 14, 2004 9:08 PM CDT

Hi Everybuddy!

Like a repeat of yesterday, Chris had quite a long school day as he and Dad continued working on the mixing system in the music department. It was a normal school day so he went right from safety patrol to his classes. He even was able to attend math class today. After school, the guys went right back to work on trying to get the school's mixing and recording system working. But before they did, Chris took his last dose of chemo for this cycle (Dad brought him a Dr. Pepper to help wash it down).

Today the music room was also the site of the Classroom Teacher's Association (CTA) meeting, so all of the efforts to fix the mixing system had to done "quietly." Chris didn't get to help as much as he did yesterday so he concentrated on making a good dent on his homework, even though there were a lot of teachers on the prowl on the choral risers in front of him. Dad was happy that he got so much homework done, went "unnoticed," and didn't end up in detention. Surprisingly, Dad and the music teacher got the most important aspects of the system working and the teacher was able to record what she needed for the second grade show that is coming up very soon.

Dad had a method to his madness in having Chris focus on his homework during a noisy meeting; he and Greg's Mom had been working on getting Chris over to see Greg after school (Greg's school is not in session today and tomorrow). Even though he hadn't finished his homework, Dad let Chris go over to Greg's home with the promise that he would work hard to finish both his homework and book report when he got home. Dad also let Mom know that he had coordinated with Greg's Mom to pick up Chris after both families met at a restaurant for dinner and to support the restaurant's effort to raise funds for the Florida Hurricane Relief Fund. It was a fun evening for him and the dinner was good.

Chris also got quite a surprise in the mail: a box of Halloween goodies from Aunt Jackie and her family. Both Chris and Genie like the smiley face balls that light up when they bounce. Genie really likes them. The fake teeth are definitely going to the clinic.

Medically, Chris' energy level was good today and he was again alert all day. He had no other complaints although he still has that pesky groin rash (although it looked a little better). Dad got a call from one of Chris' oncologists, who had recently spoken with the doctor in Philadelphia. Chris will definitely heading that way for their clinical trial evaluations; it is believed that he will qualify for the trial. Dad will work some details with the doctor here at tomorrow's clinic visit, and the doctor in Philadelphia is expected to be calling soon. A CT scan of Chris' liver area is also expected to be scheduled for sometime during the next ten days or so. Additionally, we recently heard from the doctor in Texas who reported that Chris' pre-vaccine cell "colony" is developing well so far and is ready to enter the next stage of development.

In other news, Chris' Confirmation has now been scheduled for the 10:45 a.m. Mass at St. Paul church on Sunday, October 24, 2004. All are of course welcome to attend. In addition, Chris is anxiously awaiting the arrival of Uncle Jonathan next Tuesday; he's got a videogame countdown going on until his arrival.

Joke of the day -- What do ghosts eat on Halloween? Ghoulash.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, October 13, 2004 9:24 PM CDT

Hi Everybuddy!

Chris had quite a long school day as he stayed late to help Dad work on a system in the music department. Earlier in the day, he went to the clinic as usual. His blood test results were again a surprise: all went up, even while still taking chemotherapy. His counts today were: white blood cells rose to 2.6 (normal: 4.0 - 12.0), hemoglobin rose to 11.4 (normal: 11.5 - 14.5), platelets rose to 33 (normal: 150 - 450), while his ANC rose to 1400 (normal: 1400 - 7400). That meant no transfusions were necessary today and Chris was cleared to go to school. He'll be able to finish the full cycle of chemo. The doctor will schedule a CT scan of Chris' liver area in order to determine whether this cycle of Thalidomide and Etoposide have had any favorable effect before a decision is made about what kind of treatment Chris should receive. The thought is that if the current cycle has been successful and Chris' blood counts remain tolerable, then it too remains a treatment option along with the others, which are general phase one clinical trials. It is still difficult to gather information in order to comparatively assess the "benefit" of the treatment possibilities.

After leaving the clinic, Chris and Dad went straight back to school, where they met Chris' class out on the walkway. Chris had missed math class again and the class then moved on to science lessons. Somehow, Chris is still holding his own in math. After school, the guys went to work on trying to get the school's mixing and recording system working. Unfortunately, there are no books on how the devices work, so it has been trial and error. Chris did a lot of his homework initially before helping test different channels once Dad got that part of the system operating. He was very helpful and had a lot of fun. Once they got home, Chris took a short break and played a game. After the break, he finished up his homework, most of which was math.

Medically, Chris' energy level was good today and he was alert all day. However, he vomited on the way to his patrol post this morning. He also had some stomach cramps tonight.

Just as a reminder to our friends in the Tampa Bay area, tomorrow sixteen restaurants in the area will be donating half of their profits to the Florida Hurricane Relief Fund. So this gives anyone in the Tampa Bay area a good excuse to eat out tomorrow.

Joke of the day -- (thanks Uncle Tom) - What kind of horse only comes out at Halloween? A nightmare.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, October 12, 2004 8:59 PM CDT

Hi Everybuddy!

Today was a not so "Terrible Tuesday" since Chris didn't have a scout meeting. Thus, he didn't feel so rushed after school. All he had to get to was his religious education class, where he saw his friend Greg. The euphoria of that was slightly subdued since the teacher decided to change the seating plan. Now Greg is all the way across the room from Chris. Bummer!

His day was normal enough, except around lunch time. That's when he saw Mom and Dad peering into the lunchroom, accompanied by his homebound third grade teacher, who is also supposed to be his teacher this year if he needs to go back into the homebound education program. Mom, Dad, Chris' teachers, as well as administrators from both his school and the homebound program met for a couple of hours to put together Chris' annual Individual Education Plan. Dad proposed a system whereby all the teachers could keep in contact (hopefully to improve coordination between the various educational providers, which are each a part of different counties and sometimes states), and pass requirements to Chris, regardless of where he is located by using Chris' website. All present at today's meeting were very receptive to the idea. Now Dad has to convince the school's principal (who was not present at the meeting).

Other than the "surprise" at lunchtime, Chris had a very normal day. He went to school, came home, did homework and then played a video game. He didn't really have much time for the latter though. Once Chris got home from school, he took a very short break before starting right into his homework; he only barely said "Hi" to Genie. Dad tried to make up for the lack of "dog time" today by bringing Genie over to the church grounds when it was time to pick up Chris after that class. They both enjoyed that.

Medically, we learned at this morning's meeting that Chris often takes "naps" in his morning classes when he finishes his work. Dad has asked about this before (given the fact that Chris has fallen asleep at the clinic and one of his current drugs is a potent sedative), but his teacher never let on about this issue until this morning's meeting. Dad will talk to him tomorrow about making sure that we are aware of "unusual activity" since it could be indicative medical matters that might need physician attention. In spite of that though, Chris is certainly hanging in there, from an educational perspective, with his contemporaries. He did not have any medical issues today, although we're still working on his rash. His skin is a little on the dry side, but not as bad as with the Accutane. Chris wanted a little bit of lotion for his legs tonight.

This evening, Chris spent some time writing another paragraph on his accelerated reading book report, which he said is due at the end of the week. He also had some reading to do for his religious education (CCD) class, so he and Mom worked on that. In anticipation of his likely upcoming Confirmation, Mom tried to introduce Chris to a webpage that contains biographies of thousands of saints. At first, Chris was interested in the "cool" ones, like St. Michael ("he has a cool sword and fights the super-bad guys"). He found a kid-friendly on-line poster of St. Michael, drawn in a more contemporary, comic book style that Chris really liked. Mom also showed him the story of St. Peregrine, who is the patron saint of cancer patients. He remained neutral about the cancer patient part, but really liked the fact that, (in Chris' words) "some dude from the 1300s beat up some other dude," then had a "serious" change of heart. He didn't think that people from the Middle Ages ever got into fights, based on the few paintings he's seen from that era. Chris noticed of his own accord the similarity of St. Peregrine's story to that of St. Paul. As for scheduling the Confirmation itself, that's still a work in progress. More about that later.

Joke of the day -- What do monsters read every day? Their HORROR-scope.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, October 11, 2004 10:26 PM CDT

Hi Everybuddy!

Whew! Chris had quite a clinic day. It started out normal enough, but while the guys were in there this morning, one child had "emergency problems," so the staff recommended that Chris and Dad return to the clinic at around 4:00 p.m. His blood test results were a bit more like we were expecting during chemo; all dropped and were: white blood cells dropped to 1.6 (normal: 4.0 - 12.0), hemoglobin dropped to 10.0 (normal: 11.5 - 14.5), platelets dropped to 27 (normal: 150 - 450), while his ANC dropped to 900 (normal: 1400 - 7400). That meant no transfusions today but we're expecting a platelet transfusion on Wednesday. Chris was cleared to go to school although that may soon change, too. The doctor thought that his counts would hold up long enough for him to complete the full cycle of chemo, which should end on Thursday evening. Chris also got his flu shot today. Chris is also starting with a new ointment to treat his groin area rash.

There was some additional news about the CEP-701 drug availability: it's scarce. It still seems possible that Chris might be able to get it, but there's no guarantee. The local doctor is going to check in with her counterparts in Philadelphia and Chicago to try to gain more information to help us make a more informed decision about ABT-751 and CEP-701. Since these are the first Phase 1 clinical trials that we are considering entering Chris into, it is tough to gather enough to make an informed decision. Still, it's better to have choices than to not have them. We'll get through this.

Chris and Dad went straight back to school after leaving the clinic and they walked in the rain to get to the classroom. Somehow Dad didn't get the message from the school nurse, but Chris came to visit her in order to get some ice for his flu shot injection site. Tonight when we pulled off the dressing and found a serious bruise. We feel pretty certain that Chris will be needing platelets on Wednesday.

After school, the guys headed back to the clinic, after making a short stop so that Chris could get a drink and a snack. The guys arrived a half hour early and found it to still be packed. Chris finished his homework, then he and Dad did the usual "drill" to kill time. Chris ended up spending over two hours at the clinic this afternoon, too. The doctor thought that his rash might be fungal in nature, so she told us to try using a different ointment. She had no idea what his "chest pain" was yesterday, but thought that it may have been related to ordinary intestinal gas. She examined him, listened to him and reviewed his last EKG results.

Medically, Chris' energy level was poor during the morning clinic visit, but the staff learned that he still was a ball-of-fire during the afternoon visit. He did have a bit of trouble with the flu shot. "Freezy spray" was used to numb the area, but the nurse injected the vaccine too quickly for Chris' tastes. The injection site bled, too. He eventually needed some ice to control some swelling (but mostly to numb the area); that worked. This evening, we're trying the new ointment.

We learned tonight that 16 area restaurants (including but not limited to Outback Steakhouses and their affiliates like Carraba's) will be donating half of this Thursday's profits to the Florida Hurricane Relief Fund. So this gives anyone in the Tampa Bay area a good excuse to eat out on Thursday.

Joke of the day -- (thanks Uncle Tom) - Recently discovered documents written by Queen Isabella's official scribe were uncovered revealing what Columbus actually said upon returning from his first voyage: "I'll bet I'm the first man who ever got nineteen hundred miles on a galleon."

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, October 10, 2004 9:18 PM CDT

Hi Everybuddy!

Chris enjoyed a spectacular day, and his friend Greg was involved in most of the activities. The day started with Chris rising early on his own. He stealthily moved into the den and began playing a video game. Dad doesn't even think that Genie even hears him. After breakfast, Chris gave his friend Greg a call to see whether he could come with us to nearby Busch Gardens. Greg still had a bit of homework to accomplish, but he was ready to go only about an hour later.

It was a perfect day for Busch Gardens: it was not too hot and was slightly overcast, so there was not too much sun beating down on everyone. Chris and Greg's main desire was to ride as many rides as possible. But for a break for lunch, they spent all of their time doing so. Their favorite attraction of the day was the "Cheetah Chase." It's a medium size roller coaster that they rode four times. They also enjoyed a weird spinning, dipping ride called the "Sandstorm," which they rode a couple of times. Mom went on a roller coaster ride and Dad went on the water ride "Congo River Rapids." Dad pretty much managed to absorb most of the water that was either splashed or sprayed into the "boat" we were in on the ride. We also met some good friends at one of the rides. She and her daughter had visited at the hospital the last time we were in-patient and Chris was upset that he didn't get to see her daughter (she's too young to visit). Well, today he stopped by and said "Hi" to Emma and then he and Greg rushed off to the next ride. Hmm, so much for hanging around and talking to the baby. He still does think Emma is "so cute" though. We also saw one of Chris' hospital nurses. We did have Greg going for a while as we all told him that after the park, Chris was going to be in a "singing marathon" and this time he and Chris had to go on stage and sing. Yeech!

Once we left the park (after three hours, which is pretty good for Chris, who tires easily), we headed home. The boys were very quiet on the car ride home, but once home managed to recover a bit of energy. They spent a few minutes (not many compared with yesterday) cruising around in the "spy wagon" (a big nursery trailer). This time though, Greg pulled Chris around in it. There wasn't anything to "spy" on this afternoon, so they came back inside. They played with Genie for a bit (she ended up under a "pile" of two careful boys). Eventually, they settled down to their latest video game (almost like visiting another world). When Greg's Mom came to pick him up, Genie made a big deal of hanging out with Greg for some reason today.

After a bit, we went out to do a bit of shopping. Chris found and bought a strategy book on how to win the classic game "Paper, Rock Scissors." Mom was surprised to find first that someone wrote a book about the subject, and second that there are apparently annual "world championship" competitions for this game. "Whodathunkit?"

Medically, Chris had a few more "complaints" about which to speak with the medical staff tomorrow. Along with his rash, Chris felt a series of short blasts of chest pain under his sternum. He described them as feeling like a bubble. It didn't make any difference whether he was sitting, standing or lying down. The pain did not radiate elsewhere either. Chris said that it definitely did not feel like the pain he felt on his side a couple of weeks ago (referring to the tumor pressure at or on his liver). After about an hour, it seemed to have passed. We are not aware of any of his medications causing this sort of adverse reaction, so it could have been gas but with all that he's had, who knows? His last EKG was normal but we will discuss it tomorrow with the doctor.

Joke of the day -- (thanks Uncle Tom) -- What do you give a sick pig? Oinkment.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, October 8, 2004 9:37 PM CDT

Hi Everybuddy!

The clinic visit went well today, and Chris was able to go from school to the clinic and back to school in time to join his class' field trip. Everything had to go just right, and it did -- from Genie waking him up to the blood testing machine "waking up" just right. His blood test results were a bit of a surprise today: all of his counts rose! Again, Chris' blood counts were far better than we hoped for after fourteen days on chemo. His counts were: white blood cells rose to 2.5 (normal: 4.0 - 12.0), hemoglobin rose to 11.5 (normal: 11.5 - 14.5), platelets rose to 32 (normal: 150 - 450), while his ANC rose to 1200 (normal: 1400 - 7400). That meant no transfusions today and Chris was cleared to go to school. There was no additional news concerning possible upcoming treatment options.

Chris and Dad went straight back to school after leaving the clinic and got there just as his classmates were about to walk out the door and go on their field trip. The class went on a "world class tour" of Vigo Importing Inc., a food processing company located right here in Tampa. We've seen their products at the supermarket but had no clue that it was a Tampa based company. The tour guides were excellent and long time associates of the family owned company (they were indeed family members). The guides took the children to almost every component of the facility. The kids also got to ride on the Vigo parade float (they participate in a lot of local parades) pulled by a refurbished firetruck (Dad had to ride on that). The company fed the students an amazing meal made from its products, of which they ate heartily (that's saying something with a bunch of fifth graders). When the kids got back to school, the class worked on outlines for an essay describing what they liked best about the tour, which the company has requested. The author of the winning essay, selected from those gathered over the course of the year from several schools will win $500.00 for their school. One of the employees joined Chris' classmates on the tour since she too will soon be leading the tour. For some reason, after about halfway through the tour, she came up to Dad and told him that she thought Chris was "really sweet." Why, he's not sure.

After school, they guys headed right home. After walking Genie, Chris settled down to playing video games. He was quite worn out by all of the walking done during the long plant tour on the field trip. One thing was for sure, the guys were well fed from the afternoon's fare so we all went out for pizza when Mom got home.

Medically, Chris' energy level was good even at the clinic but we could tell that all of the walking on the tour was beginning to wear him down (and about half of his class). Chris complained about itchy hands about fifteen minutes into the tour. He then waited patiently for about twenty minutes while Dad determined whether he really needed medication while waiting to stumble upon a water fountain (sometimes the itchiness goes away spontaneously). Dad eventually gave Chris some pain management medicine. Later this evening, Chris had a rash on his lower abdomen that was a little different (redder) from the rash at the same place a few weeks ago.

In other news, Volvo Car Dealerships throughout the US will be donating $10 to local charities for each test drive that occurs this weekend. Alex's Lemonade Stand (the fundraiser for neuroblastoma created by a little girl who died a couple of months ago at the age of 8) has been selected as that charity for many of those dealerships. It turns out the CEO of Volvo Cars of North America had met Alex personally, was touched by her story and wants to make sure that her dream of raising $1 million for neuroblastoma research is realized in 2004. So, if any of you have ever thought about test-driving a Volvo, this may be a pretty good weekend to try it.

Also, we'd like to point out a thought-provoking essay written by a 19 year old neuroblastoma patient who recently won a scholarship competition put on by the Andre Sobel River of Life Foundation. This organization honors young cancer patients. The subject of the essay was "The letter I wish I had received from a friend or family while in treatment." The winner wrote this essay as if it were a letter to herself, but she adopted the voice of a very sweet and giving friend from clinic who died last summer. As a 19 year old, she is capable of eloquently speaking for her young peers, who frequently share similar wisdom. To read the essay, please go to www.andreriveroflife.org/award2004. Then go to "Click here to read Anna O'Connor's winning essay."

Joke of the day -- Why did the witch need help with her homework? Because she was having trouble spelling.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, October 7, 2004 9:03 PM CDT

Hi Everybuddy!

Today was as "normal" a day as Chris has. There was nothing particularly special about it, other than he didn't have any problems and was able to spend the whole day at school. He did have a bit of homework today but he made quick work of it after a short break at home. After homework, Chris began playing one video game but then switched to another after a while.

Dad had dinner ready just as Mom walked in from work. Chris decided unilaterally to make the movie selection for the night: "Ace Ventura 2." Jim Carrey does a great job being "gross" in a way that fifth grade boys can really appreciate. As Mom hadn't seen this movie before, we decided to let it play.

Medically, Chris' energy level was good. He asked for a Zofran for sudden nausea after "dog piling" with Genie not long after dinner and medication. He had been playing keep-away soccer with Genie's favorite ball which probably had something to do with it. Fortunately, he managed to "hold onto" his dinner and his medications. At bedtime, Chris' only complaint was of an itchy right shin. He had been scratching an area about an inch or so under the bug bite area that had oozed for a couple of days. That bug bite is still there but looks fine and did not seem to be the cause of the new itchiness. Benedryl took care of the issue. We'll keep an eye on that since nerve problems can develop from Chris' current treatment drugs.

Joke of the day -- Why did the witch need a computer? She needed a spell check.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, October 6, 2004 8:40 PM CDT

Hi Everybuddy!

Today was a good day for Chris; he called it a "lucky" day. It started with Genie dropping her favorite ball right on his belly button in her effort to awaken him, and worked up from there. He thought that was a big laugh. Chris' first stop of the day was school to perform his safety patrol duty. Chris and Dad then headed directly for the Tampa clinic so that Chris could get a blood test done and to hear whether anything new was happening regarding his treatment. Chris' blood counts were better than we hoped for after twelve days on chemo. His counts were: white blood cells dropped to 2.3 (normal: 4.0 - 12.0), hemoglobin rose to 11.3 (normal: 11.5 - 14.5), platelets dropped to 30 (normal: 150 - 450), while his ANC dropped to 1100 (normal: 1400 - 7400). That meant no transfusions today and Chris was cleared to go to school. The doctor stopped Dad in the hall when she heard his voice (Chris didn't need to see her today). It looks like Chris may be heading to Philadelphia near the beginning of November to see if he could be eligible to enter the CEP-701 clinical trial. Before he can go though, Chris needs to try to finish out this cycle of chemo and Thalidomide, both of which must stop two weeks prior to possibly beginning that protocol. We're still interested in learning more about a couple of clinical trials in the hopes of trying to identify the best one for Chris.

Chris and Dad went straight back to school after leaving the clinic. After school, Chris and Dad hung around to do some work in the music room. The school has a fantastic music mixing unit, but all of the instructions have been misplaced so Dad and the music teacher are going through the tedious process of trying to get it up and running again. Once Chris took his chemo and sat down for a bit, he had a blast as he tried out the dozens of musical instruments that are in the room. Unfortunately, the mixing console is still a work in progress; Chris said that he wouldn't mind "working" in there again. He ran some messages for the music teacher.

After the afternoon "school session," Chris started right on his homework once he walked Genie. It was a pretty good job but there is some work that he and Mom needed to do once she got home from work. Chris played a few games, then he and Dad worked on a letter to send to Melanie, Chris' former au Pair from Germany. He doesn't remember her (she was with us when Chris was a toddler) and it's been a while since we contacted one another so the letter contains a lot of pictures of our house, Chris, Genie, more Chris, the family, more Chris, our relatives in Germany and more Chris. If a picture is worth more than a thousand words, she's got a handful. Chris enjoyed all of the pictures.

The guys had spent so much time looking for pictures to put into the letter, that Mom snuck up on them when she got home. They had forgotten to fix dinner, so out we went. After dinner, we gave Chris a couple of quarters to play an arcade games. There he had his first stroke of "luck:" he managed to capture a pocket watch with one of those "claws of fate" machines. His second stroke of "luck" occurred when he got home. He identified and pulled (by Chris) a previously unknown loose tooth in less time than it took Dad to walk Genie. Now that's lucky. It came out easily, but Chris' mouth bled through 3 gauze bandages for about 30 minutes before eventually stopping the bleeding on its own.

Medically, Chris' energy level was good except for at the clinic, again. Dad kept him awake this time. Chris complained about itchy hands about fifteen minutes after taking his chemo but the sensation either stopped or he forgot about it when he began experimenting with all of the musical instruments. For some reason, just as we sat down to eat (after a long journey of only two miles to the restaurant), Chris felt nauseous. We gave him a Zofran and things settled down. He remained quiet for most of the rest of the evening.

Joke of the day -- What do vampires keep in their medicine cabinet? Coffin syrup.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, October 5, 2004 9:10 PM CDT

Hi Everybuddy!

Chris had his first "Terrible Tuesday" for this school year. Religious education classes
have either been canceled or Chris has been in the hospital each time that it has met so far this school year. But today, everything worked. "God school" meets about 45 minutes later this year compared to last year. That means that Chris has more time to do his homework after school, but he has only fifteen minutes to get from church school to his scout meeting. Fortunately, his friend Greg is in both events, so at least he has a friend there.

Chris had a very normal day, as his days go. He went to school and came home. No phone calls from the school nurse. No problems mentioned by his teachers. The teacher who assigned the "family tree" homework wanted to know the national origin of each of Chris' great-grandparents, so Chris and Dad modified the map on his family tree to reflect that information. His other teacher is going to read the book on which Chris did a report to see how good of a report he wrote. She has been wanting to read that series of books anyway, so Chris gave her a good excuse to do so.

Once Chris got home from school, he took a short break before starting right into his homework. He took a break to play with Genie a bit. After Dad looked at his homework, Chris watched a "Johnny Quest" video and just relaxed before putting on his scout uniform.

The scout meeting was focused on some of the boys earning their "Showman" badge. It requires a mixture of acting, music, comedy and all. The boys had a great time and this meeting was one of the few times that they all pulled together. Chris and Greg were up to their usual antics of course.

Medically, Chris' energy level was good, but he just isn't as energetic as he usually is. He complained about having "itchy fingers" since he and Dad were walking from school but either he forgot about them or they had stopped itching by the time they got to the car and the medicine bag. Dad will mention it tomorrow nonetheless since it may be a side effect from the Thalidomide.

Joke of the day -- Why do mummies make good secret agents? Because they are good at keeping things under wraps.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, October 5, 2004 5:50 AM CDT

Late entry from Monday, October 4, 2004:

Hi Everybuddy!

Today went well for Chris as he did his clinic and school things and with the help of his grandparents, got his "big project" done. As usual, Chris and Dad went to school first so that Chris could do his safety patrol duty. Dad helps ensure that things are working well for the school's morning TV show (a kids new and announcements). He also signs Chris out from school. Chris and Dad then headed directly for the Tampa clinic so Chris could get a blood test done and to see if the doctor wanted to increase Chris' dose of Thalidomide (the plan for that was made before they decided to give Chris the Etoposide). Chris' blood counts were better than we thought that they would be: white blood cells dropped to 2.5 (normal: 4.0 - 12.0), hemoglobin rose to 11.2 (normal: 11.5 - 14.5), platelets dropped to 31 (normal: 150 - 450), while his ANC dropped to 1200 (normal: 1400 - 7400). Chris was cleared to go to school. The doctor did want to increase his dosage of Thalidomide. She also said that Chris would be on the traditional 21 day cycle for Etoposide if his counts permitted that. She also informed us that Chris would be able to go to the Children's Hospital of Philadelphia and be in the CEP-701 trial. We replied that we did but we needed some more information as we are also interested in the ABT-751 drug. At least there are some options now.

Once freed from the clinic this morning, Chris and Dad went straight back to school. After school, Chris wanted to get his homework done and then reminded Dad of a project that he had due this Friday: build a family tree. Dad also bumped into his reading teacher and the assistant principal and they reviewed the procedures so that Chris could get reading credit for all of the neat books that currently aren't addressed in the school's accelerated reading (AR) program. Chris now has to provide the teacher a book for her to approve before he can gain AR credit by rendering a book report. It will help him as he had to work to produce the book report that he did that was pretty good.

Chris was quite pleased to find Mom working from home when he got home but he was strictly business and went to work on his homework. He and Dad decided to put the finishing touches on Chris' family tree as there were still some holes to fill-in. He interviewed each set of grandparents and then Dad recorded it in a family tree program. Since Granddad sort of does this as a hobby, Chris thanked him for "doing his homework" as Granddad has put together a fine book showing the family on Mom's side back a few centuries or so. We then added some maps and flags from where his ancestors originated.

Medically, Chris' energy level was good except for at the clinic where he just nods off. There must be some sort off gas in the air. Dad keeps assuring the medical staff that everywhere else, Chris is his usual ball of fire. Chris does have one bug bite that still looks healthy but just isn't healing as fast as it seemingly should be. The doctor examined it without comment. We changed the dressing at the clinic. Chris did start on the increased dose of Thalidomide this evening.

Joke of the day -- Why did the chicken cross the road? To prove to the opossum and armadillo that it could be done.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, October 3, 2004 9:06 PM CDT

Hi Everybuddy!

We finally had a normal Sunday around here: no hospital and no hurricanes. Chris attended church this morning, when he learned that the younger brother of one of his friends began as an altar server today. Chris still remembers him as a three year old. Time just keeps on rolling. After lunch and a couple of errands, Dad joined Chris and Mom to watch the film, "Shark Tale." We were disappointed with the movie, which featured nice artwork and a lot of big name talents, but a boring script. Chris has become a real popcorn connoisseur lately, and put a serious dent on his bag of popcorn this afternoon.

After the movie, we walked around the mall, as is our custom, in order to allow Chris to stretch his legs. Chris checked out the "usual places" (game store and video store at one end of the mall). He also stopped by his special kiosk, where one of his favorite salesladies was working today. She really likes Chris. The two of them joke back and forth and Chris always "sneaks" up on her. Once home, Chris asked if he could finish a book report in lieu of going grocery shopping. How could we say no to that?

Once the groceries were put away, we went to check out a newly built restaurant (one of Grannylyn and Granddad's favorite places to eat is now here in Tampa). Chris tested the chef's abilities by ordering a hot dog. It had been grilled and was a little blackened when it arrived at the table. Chris said that it had a scab. Nice! (We're pretty sure that the chef would not have liked that description so much, but Chris liked it just the same.) Once home, he and Genie played tug-of-war and had a dog pile. Mom gave Chris "belly rubs" (normally reserved for the dog). Genie got jealous and went a little crazy trying to displace Chris in order to get belly rubs for herself.

Medically, Chris had a pretty good day and had no problems. He generally plays quietly now (aside from the usual dog pile scenario, which doesn't last more than 10 minutes usually). Chris is starting to bruise for unexplained reasons (he doesn't know how the bruises are arising, in other words), so we would not be surprised if a platelet transfusion is in his near future.

Joke of the day -- What is another name for dental X-rays? Tooth pics.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, October 2, 2004 8:55 PM CDT

Hi Everybuddy!

Chris had a really cool day, which he started early. His internal clock must still be set on "school schedule" since Dad found him playing a video game in the den when he took Genie out for her first walk of the morning. Chris then ate a relatively good sized breakfast of his "new discovery" cinnamon toast but without any butter (it's actually quite nice). As soon as 9:00 a.m. rolled around, Chris picked up the phone to call his friend Greg. He was elated to learn that Greg could come over at 10:00 a.m.

When the two boys got together, they did their usual "program." First they took turns playing the video game du jour. Today, Chris reminded Mom that he had scored over "60" on his platelet level yesterday, so she ordered in ordered in Papa John's pizza for the boys (they both like it). After a second period of video games (played while waiting for the food to digest), they joined Dad out in the pool for about an hour. They invented yet another new game, this one called "Fish Freeze Tag." The one who is "it" has to aim Chris' mechanical fish at the people being chased. Once the fish has released, the "chased" have to "freeze." If the fish touches them, they stay frozen until either the game is over or their teammate hits them with a beach ball (which has to be thrown at a distance). It was quite energetic. They then had a diving competition, which morphed with the basketball game "Horse." Greg won that. Dad would also throw the boys up in the air and they would dive into the pool. Greg can even enter the water vertically but Chris won't try that (yet). The next thing was a stuntman game, where they would do stunts while entering into the water. It was fun but they were tired by the end of an hour.

Chris went back to playing games until it was time to go get our neighbors and for dinner out. Chris acted like the coachman by greeting them and opening the car doors for them. We went to a restaurant that serves peanuts in the shell that allows its patrons to throw the shells on the floor. Chris loves doing that. Aside from that though, Chris was pretty quiet throughout the meal.

Medically, Chris' energy level was good throughout the day. He was energetic in the pool for an hour, but certainly quieted down during the video gaming, dinner and at other times. However, he recovered enough spunk before bedtime to have a dog pile with Genie. Actually, he and Greg had a fairly energetic dog pile with Genie earlier in the day, too. Chris required no pain medications today, but Dad had to redress his little "bump" on his shin that isn't healing as well as it should; it's continuing to ooze, but at least it's not getting hot, red or otherwise looking infected. If it's not better by Monday, then the medical folks can take a look at it then. Also, Chris complained a couple of times today that his right arm hurt. It seems to be an intermittent pain precipitated by movement (one of his complaints came after he and Greg were trying to sneak up on Mom by crawling, while another one followed raising his arm to take off his shirt). The pain seems to be in the center of his biochip area, so he calls it "muscle pain," but also said that it feels like it's deep inside his arm. He did not want any pain medication for it, and he seemed to only be reporting the pain because he knows that we're charting his pain now.

Joke of the day -- How does the Eskimo mend his house? With "iglue."

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, October 1, 2004 10:10 PM CDT

Hi Everybuddy!

Today was a fairly normal day for Chris, and we're thankful for that. Chris made it in for safety patrol duty before Dad signed him out of his classroom as usual for a Friday morning. Chris and Dad then headed directly for the Tampa clinic so Chris could get a blood test done and to see whether there were any new test results available. Chris' blood counts were better than we thought that they would be: white blood cells dropped to 3.5 (normal: 4.0 - 12.0), hemoglobin dropped to 11.1 (normal: 11.5 - 14.5), platelets were 61 (normal: 150 - 450; due to Tuesday's platelet transfusion), while his ANC dropped to 2100 (normal: 1400 - 7400). Chris was cleared to go to school. Dad also received a copy of Chris' MIBG scan results, which indicate (not unexpectedly) that there is a large area of increased uptake in the back part of Chris' right liver lobe, which is consistent with new tumor growth. The radiologist also thinks that the center of this new growth may have some dead tumor tissue. We also were referred to a new doctor concerning Chris' ability to receive the new drug ABT-751, but have not actually made contact with him yet. The local medical team (and Mom and Dad) intend to check in with him on Monday.

Once freed from the clinic this morning, Chris and Dad went straight back to school. Dad learned that the school's "foolproof" system of accounting for Chris hiccupped; Dad had to get with the attendance clerk to ensure that Chris was recorded as present today. Even the best systems fail occasionally; for some reason, his teacher had marked him absent.

After school, Chris was hoping to get together with his friend Greg but we learned that it couldn't happen today. Chris decided to play his new video game (it's great -- thanks Uncle Brian!). Chris was on phone watch while Dad cleared some more debris in the back yard.

Chris received another package in the mail today: his much-awaited-for ocarina (an ancient type of clay flute). He bought it with his own money and is quite impressed with it. Dad will be impressed if Chris learns to play Ravel's "Bolero" on it; the music for that particular melody came with the ocarina, along with a few other tunes. In addition, Chris received two interesting phone calls today. The first was from Grannylyn and Granddad, while the second was from Uncle Brian. He filled them all in as to how he was feeling and how things were going for him.

Medically, Chris' energy level was pretty good but he opted out of swimming for a bit, and then the afternoon thunderstorm came when he was ready to go swimming. He did not require any pain medication. This evening, Chris had a small infected "bump" (possibly a bug bite) on his shin, which Dad cleaned for him.

Joke of the day -- What is the most dangerous city? Electricity.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, September 30, 2004 9:33 PM CDT

Hi Everybuddy!

Today was another "normal" day for Chris. The major special event for today was Chris attending the first meeting of the school's chess club. Neither Chris nor his opponent "won" the match as they ran out of time but they enjoyed their session. Chris said that his day at school was "nice."

When he and Dad got home, one thing Chris does for the family is to check the front door for packages. Today he found a couple of packages in the mail waiting for him. One was from Uncle Brian (thanks for the new game!!), while the other was from the Wild Planet company. Wild Planet wants Chris' opinion again on a new game that it intends to market soon. Chris thinks that he has the coolest job in the world: toy tester, or as that company calls him, "Kid Inventor." We think he's right about that, too.

Chris got right to homework once he arrived home, even though he would have preferred to have opened his packages. He did a very good job on his homework. After homework, Chris began playing his video game again while Dad was involved in continuing the clean up of yet more hurricane-related yard debris.

Medically, Chris' energy level was good. He had no stomach cramps nor needed any pain medication today.

Joke of the day -- How many dead people are in a graveyard? All of them.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, September 29, 2004 8:55 PM CDT

Hi Everybuddy!

Today was so much like normal kid's day that we almost have nothing to report. It was quite normal, which is noteworthy in itself. Chris was a little slow on the start this morning, but managed to get to safety patrol duty on time. His day at school was uneventful, other than a science test and reading about an expedition that walked to the North Pole. This teacher must like the Arctic since it's the second book about it that they've read this year. Chris also took an Accelerated Reading (AR) test about the seventh "Narnia" book by C.S. Lewis. It was fairly complicated, but he managed to squeak by with a 100% on that test.

When Dad picked him up after school, Chris was pretty happy; after a short break he began working his homework on his own. He also wanted to write one book report in order to receive more AR points. He wrote a report about the second book in the "Series of Unfortunate Events." His report was quite concise but a little too short. Yet, his writing style is much improved. This time he did it using the word processor on his computer. Mom helped with some editorial thoughts when she looked at it late in the evening.

After doing homework and writing his book report, Chris started in on a video game. For some reason a game that he had been playing for a while and had taken to the clinic wouldn't let him proceed further into the game. It was some sort of malfunction that he hopes was induced by the clinic's game device so he had to start all the way back at the beginning again.

Medically, Chris' energy level was good. He had no stomach cramps nor needed any pain medication today.

Joke of the day -- How did the lumberjack use the computer? He logged on.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, September 29, 2004 5:50 AM CDT

Late entry from September 28, 2004

Hi Everybuddy!

Chris was a bit surprised to have another not-normally-scheduled-on-a-Tuesday clinic visit, but the clinic was closed yesterday when he was supposed to have an appointment. After nice breakfast of sausage and waffles (much of which he didn't eat) and the usual morning activities, Chris and Dad headed directly for the Tampa clinic (at least he didn't have to rush off to school since they were again closed today). Chris' blood counts have started to show the effects of being on chemo again to a small extent. His counts were: white blood cells dropped to 3.8 (normal: 4.0 - 12.0), hemoglobin rose to 12.3 (normal: 11.5 - 14.5), platelets dropped to 22 (normal: 150 - 450), while his ANC dropped to 2300 (normal: 1400 - 7400). Since school has been closed so much lately (thanks to hurricanes), the doctor decided to give Chris platelets today rather than missing school tomorrow. Dad also received a copy of Chris' MRI scan results, which indicate that his gall bladder appears normal and his tumor is about 3" in diameter. We also learned that the new drug ABT-751, may not actually be available for several more weeks (it is a very new drug, so availability dates are not set in stone). As has been oft the case especially recently, Chris got a case of sleepiness while waiting in the clinic. He joked around for a bit with the "cool" volunteer from the Children's Cancer Center who provides "Monday" morning activities. Chris was told to return at 1:30 p.m. for the platelet transfusion.

Once freed from the clinic this morning, Chris and Dad went to a nearby store so Chris could look around and get some early lunch. We were getting low on our stock of "alcohol soap," so Dad approved the idea. Chris didn't get anything but did scope out new "spy" gear. The guys then headed home for about a half an hour to walk Genie and to pick up a game, book, and a movie to keep Chris occupied during the transfusion. He also had to take his chemo dose (which we have at home) and to get pre-medicated with Benedryl and Tylenol in advance of the transfusion.

The transfusion went well (thanks blood team) but for the end, when Chris was in the "cool down" period. For some reason, he got a bad case of stomach cramps, despite having gone to the bathroom a little earlier. The cramps ended after he napped for a half an hour. Chris asked to stop by Toys R Us on the way home and got a new game with his savings (thanks to a lot of people for that).

Chris received a lot of mail today, including magazines and a card from "Aunt" Cathy, who always comes up with the most unique happy face cards (she must have them custom made for Chris). The guys then stopped by at church only to learn that "God school" (religious education classes) had been canceled (as were most schools around here today) due to post-hurricane issues. After returning home, Chris played his new video game until Mom got home. Despite playing a lot of video games, Chris read a great deal today, also.

We called Uncle Eric, who is celebrating his birthday today. Luckily for him, we got his answering machine. We didn't realize just how poorly we sang until Genie started acting crazy as we sang into the telephone. Oh well, it's the thought that counts!

Medically, Chris' energy level wasn't bad but for his sleepy periods at the clinic (could he be coming allergic to the clinic)? He did not require any pain medication, although his stomach cramps were getting to him after a while -- both at the clinic and to a lesser extent, at dinnertime.

Joke of the day -- (thanks Grandpa) -- Why are two times ten and two times eleven the same? Because two times ten is twenty and two time eleven is twenty, too.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Happy Birthday Uncle Eric!

Love,

Chris, Alison and Pat

Monday, September 27, 2004 9:12 PM CDT

Hi Everybuddy!

Chris had a great day today despite awakening early to go to the clinic, only to learn that it was closed when we got there. He was hoping to "sleep in" since he didn't have school today. No such luck though since he had a previously scheduled clinic appointment. Once at the clinic and discovering its closure (complements of Hurricane Jeanne), Chris received a call from Greg, who also didn't have school today. They made plans to call each other later this morning since both sets of parents had things going on. Chris, for one, had to get some new shorts since he's been growing.

When the guys got home, Chris walked in the house just as Greg called. Their game plan was to get together before noon; it worked. First on their agenda was a big video game session, followed by a check of the pool (the water temperature was too cool for Greg because all of the rain from the hurricane). Next was a hearty lunch; both boys ate well. They played some more video games then invented a game in which Genie's dog kennel was the "jail." The kids took turns sneaking up on one another, trying to free Genie from jail. Genie enjoyed the game, too.

Once Greg left, Chris finished reading the seventh book in the Narnia series before going back to playing video games until Mom got home. Dad had dinner ready. Chris likes German bratwurst but doesn't like the look of their mustard though. Chris didn't do too much physical stuff today, but for several dog piles with Genie and Dad. He and she had quite a tug-of-war during one of the dog piles that pretty much wore both of them out for a bit. In other news, Chris received a call from Grandma and Grandpa. Dad didn't hear much of it but knows that they were trading jokes back and forth. Chris was happy to learn that there will be no school tomorrow either, primarily because of the continuing widespread power outages.

Medically, Chris had a great day and had no problems. Chris and Dad picked out a kid-sized nylon folding chair that Chris sat in today when playing his games. He said that it made him feel better than the way he usual sits. He liked it enough that he wants to get one more for when Greg comes over.

Joke of the day -- (thanks Uncle Tom) -- Why do people say "tuna fish?" They don't say "beef mammal" or "chicken bird."

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, September 26, 2004 9:23 PM CDT

Hi Everybuddy!

Chris actually had a nice day today, despite Hurricane Jeanne. Once again, we were very lucky to have maintained power throughout the day. There was no point in waking him up particularly early this morning, especially given the poor weather and no prospect of going outside or having his friend come over to visit. So he awoke at midmorning, when he enjoyed another cinnamon buns since he liked them so much yesterday. He did again today, too. Shortly thereafter, Chris then began a video game marathon, which was often watched by Mom and/or Dad. Although he took breaks for lunch and dinner, Chris was pretty well attached to the game controller for most of the day.

Hurricane Jeanne passed by here more energetically than did the previous two hurricanes which have blown by in the past six weeks, but at least actually as of this moment, has caused less damage. Chris said that this was the first time that he understood what the term "howling winds" means, but he took it all in stride. We have had periodic breaks in power but nothing longer than a minute. The worse impact on us was that at one point, Chris' game was unexpectedly ended without him having been able to "save" it first. Thus he had to start that part of the game over again. That is an adverse consequence with which we could all live. Outside, there is some tree debris, but it is not as extensive as it was before. Mom thought that one of the more fascinating things to watch was the pool water being sloshed around en masse from one side of the pool to the other, over and over again. It reminded her of movies showing sailors trying to eat a meal while the food moves back and forth across the table.

Later this evening, Chris received a call from his friend Greg, who informed him that, like Chris' school, his school will also be closed as city, county and utility companies try to clean up the aftermath of yet another hurricane. The boys have made plans to call each other tomorrow to see what they can cook up together. Chris also heard from another young friend, a relative of one of Mom's coworkers.

Medically, Chris had a pretty good day, with no particular problems. The one time he rubbed his leg, it appeared to be due to the way he had been sitting while playing a video game. We can live with that. Obviously, sitting in front of a video game all day is not reflective of an abundance of energy, but he had enough to play with Genie from time to time. He is also working on finishing a couple of books, which he hopes to accomplish by the end of the week.

Joke of the day -- (thanks Uncle Tom) -- One of those unsolvable questions of the universe: Why doesn't glue stick to the inside of the bottle?

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Our thoughts go out to our Florida neighbors who have been bowled by hurricanes, some of whom have been hit three times, within the last six weeks, as well as everyone else everywhere who has suffered from them. With only about another month to go before the end of this year's hurricane season, we hope that they will be able to make lasting repairs to their homes and businesses, and be able to move on with their lives.

Love,

Chris, Alison and Pat

Saturday, September 25, 2004 10:07 PM CDT

Hi Everybuddy!

Dad let Chris sleep in a bit this morning since we weren't going to do anything until the house was ready for yet another hurricane. Dad and Mom ended up storing anything that could blow away -- again. Chris played by himself for that part of the morning for which he was awake -- again. He got a treat when he woke up though -- freshly baked cinnamon buns. So, all was not totally boring for him. Later, his friend Greg came over and spent the day as they usually do: playing video games, swimming and playing "spy games." The swimming did not last long, perhaps 15 minutes. This time the boys got out of the pool early because Greg felt chilled by the water. Unlike last week, Chris was able to move around the pool without difficulty. They were in the pool long enough for Chris to teach Greg how to play "Fish-tag."

At one point today, Dad trimmed Chris' hair. He had something of a shaggy dog look about him, so Dad evened things up. We also hope to be able to get a new professional photo of him before the possibility that he might lose his hair again. He seems to shed hair when he is on the particular chemo agent that he started yesterday, regardless of the dosage level. Of course, weekly hurricane threats make it somewhat difficult to get out for photographs or much else. So, we'll see whether we can make this happen. Later, Chris saw Greg briefly again after church (they went today since we are expecting Hurricane Jeanne by tomorrow morning -- in fact, the bands and gusts of wind are already here).

Mom and Dad took turns running errands and Mom made sure that everyone had plenty of medicines (thanks to our pharmacist, too). We're happy to say that Chris tolerates all of this hurricane inconvenience rather well. We've been fortunate enough to be leeward of most of the big trouble so far, so he hasn't experienced the worse of what could be. Having said that, he has enough of a fight on his hands.

We called Grandpa to wish him a Happy Birthday. He said that our singing had improved this year -- slightly. We also received a call from Uncle Brian, but that was inadvertently cut off as high wind gusts associated with the second band of weather thrown our way from Hurricane Jeanne passed through the area. Sorry Uncle Brian! At least he was able to talk with Chris for a few minutes. Chris also missed a call from Uncle Alex. We'll use this as an opportunity to remind you that if we lose power as a result of the storm, we'll be sure to fill you in on the goings-on with Chris as soon as we're able to do so.

As for today, Chris' energy level was decent. He was not overly energetic, but he also did not shrink from doing anything in particular. At church this evening he rubbed his shoulder as if it hurt, although he did not ask for any pain medication at any time today. He seems to be tolerating the combination of Thalidomide and Etoposide fairly well so far. The only obvious effects so far are that his skin is a bit drier and he can't run or walk quickly without getting nauseated. The latter is a common chemo side effect for him and really isn't a big deal as long as he walks to wherever he's going. The true test will be his next blood test, which we hope will be as normally scheduled on Monday at the Tampa clinic (let's see what Jeanne brings us first).

Joke of the day -- (thanks Miss Shelley) -- Doctor, Doctor I swallowed a bone. Are you choking? No, I really did it.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Happy Birthday Grandpa!

Love,

Chris, Alison and Pat

Friday, September 24, 2004 9:08 PM CDT

Hi Everybuddy!

Chris' day was much improved and he didn't require any pain medication. After a sparse breakfast and then performing his safety patrol duties, Chris and Dad headed for the Tampa Clinic. Although some of the staff thought didn't think that they would see Chris today as he had his blood tested yesterday, there were other reasons to be at the clinic. Dad wanted to discuss Chris' most recent pain complaints with the doctor, including pain relief instructions, as well as to see whether any pending test results were available, and learn whether there was any progress in finding another agent to complement the Thalidomide. There was some reluctance to move Chris into the examination process, but the doctor quashed that as she was very interested in his hip and thigh pain and had some information for us despite not having received any results from Chris' latest scans. It was an example of how a parent has to do what is correct and "help" manage the child's healthcare.

Chris' new leg pain could be either be a side effect from the Thalidomide or caused by pressure from the tumor. We have been instructed to begin keeping a pain journal; if he continues having pain or has difficulty in going to the bathroom (he hasn't to date), then she will likely order a MRI of his spine. The latest bone scan indicated no evidence of bony disease, but MRI uses a different technical process for imaging. The oncologist also decided to start Chris on low dose Etoposide (a chemo drug which Chris has previously received on several occasions) as the complementary drug to the Thalidomide. As of today, Chris is now receiving it orally through a syringe after school. In addition, Chris has been registered for the CEP-701 study (although his platelets are currently too low to enter -- there is a waiting list). Dad also let the doctor know that we are willing to travel anywhere (possibly to Chicago) in order to get access to the ABT-751 drug; the local doctors aren't qualified to prescribe the drug. It was a pretty productive day. The medical team will really be watching Chris' blood counts now since his bone marrow is still very much suppressed. It is a risky time for Chris.

After the clinic visit, Chris headed straight for school. When Dad picked him up later, he was very impressed by the class' Friday Fun Day activities. Someone had brought in some "great" pizza as a snack. Chris spent a lot of the afternoon playing games while Dad worked on the "hurricane tree," as Chris calls it. The two of them later went swimming for about a half hour before Chris got too tired. He had been given a cool mechanical fish that looks real enough when it swims in the pool. After watching and swimming with it a while, Chris and Dad invented a new game called Fish Tag that turned out to be quite fun. The person who is "it" must launch the fish at the other (who must freeze when the fish has been released). It's quite challenging. Chris managed the longest tag of the day -- across the pool. Both he and Dad were quite surprised (thanks Penny!).
Mom arrived home late this evening, but not long after the guys got out of the pool; she surprised them by coming home with dinner. Chris also received a very nice phone call from Grannylyn and Granddad, as well as a special letter from Grandma and Grandpa. All-in-all, he thinks that he's a pretty lucky kid. He's right.

Medically, Chris' energy level was great and he didn't require any pain management medicine. He did have one "setback" in morale; we could tell that he didn't want to hear that he may lose his hair again because of the Etoposide. Although disappointed, he moved on beyond that within a few minutes. He knows that it grows back.

Joke of the day -- (thanks Uncle Tom) -- A history joke -- How did the Vikings send secret messages? By Norse code.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, September 23, 2004 9:26 PM CDT

Hi Everybuddy!

Chris enjoyed his not-normally-scheduled-on-a-Thursday clinic visit this morning since he was able to go there with Mom. Dad has his own medical appointment this morning. After breakfast and the usual morning activities, Mom took Chris to school; while he was doing his safety patrol stuff, Mom signed him out so that he could visit the clinic. As you may recall, yesterday the doctor wanted Chris to return for a blood test because of concern over his recent falling hemoglobin counts. (Hemoglobin represents the oxygenated red blood cells, which helps provide energy at the cellular level to the human body.) Thankfully, Chris' blood counts climbed today: white blood cells rose to 5.4 (normal: 4.0 - 12.0), hemoglobin rose to 11.8 (normal: 11.5 - 14.5), platelets rose to 43 (normal: 150 - 450), while his ANC rose to 3300 (normal: 1400 - 7400). Everyone was quite pleased with especially with that hemoglobin number, nor can we complain about the others. Mom received no new test results while she was there. Chris was alert at the clinic and having a good time questioning Mom and the staff on duty about comparisons between different kinds of "gross stuff," which he read in his newly arrived Halloween edition of "Nickelodeon Magazine."

Typically, no doctor is present on Thursdays, and today was no exception. It would have been nice if one had been though since Chris had developed a new symptom. On the way out the door at home, Chris walked slowly and had difficulty getting into the car, although he managed it. The reason: new pain centered in the leg and hip area. This new development was recorded in his chart though.

After the clinic visit, Mom returned Chris to school, where he had the misfortune of walking into his classroom right as a test was beginning. Surprise! He had just as much difficulty getting into and out of the car and with walking at the school as he did earlier. Mom asked if he was ok before she left him at the classroom, but Chris said that he was fine and didn't need anything for it. All was fine for a while -- until the school nurse called Dad, reporting the hip and leg pain. Chris had handled it for most of the day, but eventually had to go to the nurse. Dad went to the school and gave him the pain medicine (it is a controlled substance, so we haven't added any to the bag of medicines that she keeps for Chris). He went back to class and completed the day.

In other news, today was the day that all of the merchandise ordered for the school fund raiser arrived. So once home, Chris and Dad broke down the order and started making deliveries. Things ordered online are shipped directly from the warehouse.

Chris received a lot of mail today and was quite surprised that some of the people whom he hasn't seen in years still think about him. Special thanks goes out to Kris, Kevin, Jean and "Aunt" Cathy. They obviously remember Chris since it was all tailored to Chris' personality. He also received a nice surprise from one of his fund-raiser customers as he delivered the order. The mail also included information about an upcoming dance competition to be held in early October that will raise money for pediatric cancer. As a pediatric cancer patient, Chris was invited a couple of months ago to attend the event as a "cheerleader" of sorts for the dancers. The packet of information contains the particulars of where to be and when.

Chris didn't have a whole lot of time to relax this afternoon. After homework and dinner, he attended a Cub Scout pack meeting. He was part of the color guard; his job was to carry the rather large American flag. It was obvious that he was doing it although he was in some level of pain. He did his job though. He and Greg were able to goof off, of course, with the other boys.

Medically, Chris' energy level was great. As noted above, he required one dose of medication for the pain in his thighs and left hip. This morning, Chris seemed to think that the pain originated in his hip joint and thighs, but tonight Chris thought the very same pain was more muscular in nature. We're not sure what may be causing it. Although the recent disease progression might be the culprit (we don't have a full picture of the current extent of disease), it's also possible that it could be the result of the Thalidomide. "Weakness" is on the drug's adverse reactions list, as is nerve damage and dry skin (Chris' skin is beginning to dry out, and he asked for lotion tonight at bedtime). Mom also noticed at bedtime that Chris' belly seemed a bit rounder tonight than it had been even just a couple of days ago (Mom gently felt it and it did not cause him any pain, nor did Mom feel anything unusual). That, too, could be the result of many things, from too much of his favorite foods in recent days to gas to drug reactions to who knows what else. Dad'll speak with the doctor tomorrow.

Joke of the day -- (thanks Uncle Tom) -- What do you get if you cross a US President with a shark? Jaws Washington.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, September 22, 2004 9:44 PM CDT

Hi Everybuddy!

Chris had one long medical day, yet he still managed to attend most of his school day. Today started out normal enough for a Wednesday with a trip to the Tampa clinic for a blood test. Dad also had some more questions to ask the doctor, so they stayed around to discuss those with her. Chris, who had been very energetic upon awakening, seemed to have been bitten by a teetsie fly just after he and Dad went into the clinic's lab area. He slept through most of the discussion between Dad and the doctor.

Chris' blood counts today were: white blood cells were 4.5 (normal: 4.0 - 12.0), hemoglobin was 10.5 (normal: 11.5 - 14.5), platelets were 36 (normal: 150 - 450), while his ANC was 2900 (normal: 1400 - 7400). The decline in Chris' hemoglobin was unanticipated; it was enough to get the doctor's attention. She ordered him back to the clinic tomorrow morning for another blood test. Last week, his hemoglobin was 13.8 and she isn't sure why it has dropped.

The discussion with the doctor went well and as a result, we now have a clearer picture of who is contacting whom about what and when, in regard to other treatment options. The doctor also mentioned that she is considering supplementing the Thalidomide with a low dose chemo agent after she checks in with the doctor in Texas.

Apparently at the suggestion or request of one of the NY oncologists, this doctor also made arrangements for Chris to have a MRI scan of his gall bladder in order to investigate whether surgery could be an option. A nurse jumped on that idea and somehow got Chris scheduled in for a scan today! That was perfect timing since he was due to be at the hospital anyway for a MIBG scan. We also fully appreciate all of the behind-the-scenes efforts that went into scheduling, obtaining last minute authorization, and registering Chris for this scan on short notice, and we are very grateful to all involved.

After the clinic visit, the guys headed right back for school. There was a little confusion as to whether or not Chris would be considered "absent" today. Dad cleared that up with the attendance clerk, as well as the time last week when Chris had been hospitalized. Dad learned that after a hospital visit, it is important to check in with her personally. When Dad picked Chris up after school, the guys stopped only long enough to get Chris a drink so that he could take some medicine. They were on a tight schedule to make it to St. Petersburg for his MIBG scan. They made it!

The MIBG scan is a very long, two part exam. During the first part, Chris must be perfectly still while keeping his arms above his head for about thirty minutes. Meanwhile the scanner slowly rotates around his upper body. He then has to endure another long portion, during which his body is scanned in bands. The whole thing took two and a half hours. From his position near where the technicians work, Dad could see that Chris' liver was well illuminated by the isotope even without filters, thus verifying the bad news about the cancer growing in his liver. There is a new technician working in the MIBG room now, and Chris was very careful in helping to "break her in." She has her degree and is smart, but is freshly out of school. Chris thought that she was nice; as a "repeat customer," he asked questions that she did not expect from a 10 year old patient.

Chris then had about an hour and a half break before he had to go through another hour long scan, the MRI. During that scan too, he had to be very still, even while he was slid into a very noisy tunnel. Chris could not even hear Dad's stories. He doesn't like having to do this kind of scan. Today, the technicians had trouble getting a good image of the target, through no fault of Chris. He was about to go batty by the time they took him out of the scanner, but Dad and the technologist were very impressed with him. It was after 7 p.m. (five hours at the hospital, and that was after a school day that started with a clinic visit) before the guys left the hospital, so they had dinner "on the go" as they headed home. Chris still had homework to do when he got home.

Once home, he found a large stack of mail, which cheered him up. One parcel was a very special card from our volksmarching club. There was a walk last week that we wanted to attend but couldn't. In addition to the idea of just being able to stretch our legs on a walk, we especially wanted to attend that walk because the club sponsored an "Alex's Lemonade Stand," which raised money for pediatric cancer research. Alex was a beautiful girl who lived a very short life but had a definite purpose to it. This tenacious 8 year old who raised about $900,000 died only a couple of months ago of neuroblastoma. To learn more, please visit her webpage, www.alexslemonade.com. Chris loved that beautiful lemon tree card.

Medically, Chris' energy level was great, but for about an hour at the clinic this morning. Chris and Dad played Uno while waiting to get called for his blood test and he had good energy while getting his vital signs taken. The bottom dropped out though while sitting in the "blood" chair. Once in an examination room, Chris nodded off while Dad and the doctor spoke. He was fine for the rest of the day, although the school nurse called to let Dad know that Chris had come to her with his mouth bleeding. It was not too serious though: Chris had pulled out a very loose tooth from his mouth while in class (bad timing)! Fortunately, she and Dad had spoken earlier about Chris taking Thalidomide, so she was her usual prepared self as she dealt with Chris and his messy safely. Chris did not complain of shoulder pain today except at the scanner. That pain though was caused by having to hold his arms above his head for so very long. He did not request any pain medication. His energy level was pretty good when he got home this evening, too. He and Genie enjoyed an active "dogpile." Both of them needed it, too, as they both had a lot of cooped up energy.

Joke of the day -- (thanks Uncle Tom) -- Did you hear about the little boy that they named after his father? They called him dad!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Tuesday, September 21, 2004 9:02 PM CDT

Hi Everybuddy!

Chris made it through a complete day of school and Dad didn't even get a call from the school nurse. We hope that is indicative of even better things, perhaps more than the even absence of shoulder pain. Chris woke up to a slow start and only picked at his breakfast. He did not have nausea at this morning, managed to get all of his medicine down, dressed and headed out the door in enough time to man his safety patrol post. Mom, who worked at home today, helped make that happen; Chris has a more extensive list of medicines to take in the morning, which is slowing him down a bit. It probably isn't helped by the Thalidomide; he takes it at night so that its strongest sedative effect occur while he's normally sleeping, but it's hard to shake it off in the morning.

Chris said that the highlight of his day was music class, at which the students got to play the piano. When Dad picked him up after school, he asked Chris if he wanted to take piano lessons. Although Chris has hinted at that before, today he said, "No thanks." Chris ate his lunch, which centered on a chicken filet sandwich. Once at our camper/van after school, Chris had to get some Emla cream placed on his mediport site,
then take a couple of medicines before he and Dad crossed Tampa Bay enroute to the hospital. They had to return there so that Chris could receive his (radioactive) MIBG injection. Normally Dad ensures that the mediport is accessed for this purpose at the clinic visit just prior to the injection; this time though, this detail was overlooked, probably in all of the effort to get the treatment plan in place (other things have been at work lately too, like fatigue from 2 a.m. medications and recent hospitalizations and hurricane preparations and clean up). It was not a problem though; the wonderful Nuclear Medicine technician had that detail coordinated before the guys arrived at the hospital. It was busy this afternoon at the hospital so the guys had a bit of a wait. Once Chris' mediport was accessed though, the MIBG team came down to meet Chris and infused the radioactive isotope for tomorrow's scan.

Once finished with the injection, all Chris wanted to do was head home. They arrived home minutes before Webelos Scout meeting was to begin, but Chris was just too tired and had still had to do his homework. He and Mom worked on the homework tonight and then Chris played a video game for a bit. During dinner (he ate well, too), Chris finished watching the movie "Ace Ventura: Pet Detective." He is a big Jim Carey fan.

Medically, Chris seemed to be in better shape across the board today. Although He fell asleep while waiting for the MIBG injection this afternoon, that in itself is not too unusual in a hospital waiting room. There were no complaints from school that he fell asleep there. His appetite seems to be rebounding. Chris did not complain of shoulder pain and did not request any pain medication. He even gave up two pillows that he borrowed since arriving home from the hospital because he did not think that he would need them in order to be able to sleep painlessly tonight. Not only that, in an energetic moment, Chris enjoyed a real, honest-to-goodness dogpile with Genie this evening. Thus, all-in-all, it was a good day.

In addition, we learned from a few friends from the medical community that Mom exerted too much of a lawyerly influence over last night's update when she sought legalistic definitions to medical terms. So, she apologizes to anyone she might have confused, but it is clear that Chris' bone scan results were just fine yesterday. Our attention is turning forward to that of tomorrow's MIBG scan. We also want to thank all of you who have provided us with a tremendous amount of moral support over this difficult past week. This has been a long ride with Chris: sometimes scary but most of the time a lot of fun and full of hope, and we are very grateful that you have been with us throughout, sustaining us as we go.

Joke of the day -- (thanks Uncle Tom) -- What was the gangsters last words? Who put that violin in my violin case? (Chris needed a little help with this one.)

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, September 20, 2004 9:42 PM CDT

Hi Everybuddy!

It took a while to get there, but Chris did make it to school by way of the Tampa Clinic. He had a slow start this morning, which may be partially attributable to the Thalidomide. It has a possible side effect of drowsiness. At one time, it was used in Canada as a central ingredient for a sleeping pill. Despite its sordid past, Thalidomide is an up and coming star against cancer and is used in fighting leprosy and melanoma. Chris' blood counts today were: white blood cells were 4.2 (normal: 4.0 - 12.0), hemoglobin was 11.2 (normal: 11.5 - 14.5), platelets were 51 (normal: 150 - 450), while his ANC was 2400 (normal: 1400 - 7400). Chris' platelet level was just below the "Papa John's threshold," so no pizza from there today. Nevertheless, it was cause for some celebration since the clinic staff members believed that this number represents Chris' ability to manufacture his own platelets!

Dad also received the bone scan results today. Thankfully it doesn't not appear to indicate any disease in the skeletal system, but in the usual medical parlance, the radiologist wrote that he did not "see convincing evidence of skeletal metastasis." Such language always leaves us hanging: does that mean that there was "some evidence," even though it was not "convincing." What is the standard to be reached before medical evidence becomes "convincing?" Still, we will take it as good news for now. Chris' only kidney (the right one) was also visible on the bone scan and exhibited signs of "hypertrophic changes," which basically means that it is somewhat thicker than it was before. Again, we're not sure what that means: is that normal or could it be a warning sign of something? Dad will have some questions on which to follow up at the next clinic appointment on Wednesday.

As for the actual appointment today, after examining a sleepy Chris, the doctor (a different one than last week) and Dad had a long discussion as Chris slept on the exam table. Dad passed along information about possible agents that could be used in conjunction with the Thalidomide, or perhaps thereafter. One promising agent, ABT-751, becomes available for neuroblastoma patients on a "compassionate use" basis beginning today. They also discussed shortening the interval between scans to every six weeks since Chris' cancer has become so active recently. One major move was made in terms of assembling a "treatment team" that hopefully could work together to put together strategies to defeat the cancer in Chris' sanctuary area: his liver. Dad explained the concept to the oncologist by analogizing the military's targeting board process. The doctor seemed to be better able to appreciate our basic concept. Initial membership for this proposed board would be herself, our local surgeon, and local radiologist, and perhaps a pediatric liver expert from Gainesville. It seemed to Dad to be a very productive discussion. We would love to add a new drug like ABT-751 to the fight since it looks promising.

After the clinic visit, the guys made a short stop so that Chris could take some medicine to help protect his thyroid gland; tomorrow he is supposed to receive a radioactive isotope injection after school. The MIBG scan itself is scheduled for the next day. Chris had been to school earlier this morning to perform his safety patrol duty, but he had to return for his actual classes, albeit late. He had a good time with his friends and "suffered" through lunch (some sort of cheese sandwich). He still weighs less than he did before entering the hospital. When Dad picked him up after school, the two helped out in the library for a bit before heading home. Chris and Dad played a video game for about twenty minutes so that Chris could unwind after school. Chris then dutifully and diligently completed all his homework. He returned to playing video games. Chris found another nice card in the mail from "Aunt" Cathy.

Before Mom came home from work, Chris had made an appeal for Mexican food. Since he usually eats well there, we agreed. His appetite was in pretty good form there. Chris came home to having to take his medicines. We've actually cut out two of the alternative/complementary medicines for a bit: milk thistle and bromelain since most of the activity going on is in his liver and centered on blood supplies.

Medically, Chris' energy level was still off a bit, especially in the morning and again in the evening. Although he started out energetic enough when he awoke, Chris was very drowsy by the time he reached the clinic. It was all Dad could do to keep him alert by playing Uno with him. Once the doctor examined him and she and Dad started talking, Chris fell fast asleep. He was fine for the remainder of the day though. At breakfast, Chris complained of something he called "empty pain" this morning, as he rubbed his right side near the liver biopsy site. Mom asked him whether he meant "pressure," but Chris replied, "no, it's the opposite of pressure." He only mentioned it once and Mom saw him rub his right side for a moment or two, so who knows what it was. Everything pretty much sets us on edge though. Chris did not complain of shoulder pain today and did not request any pain medication.

Joke of the day -- (thanks Uncle Tom) -- A noise woke me up this morning. What was that? The crack of dawn.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, September 19, 2004 9:06 PM CDT

Hi Everybuddy!

Once again, Mom tried to bring Chris closer to his school schedule by awakening
relatively early for a Sunday, at about 8:30 a.m. That's about an hour earlier than normal. He was a little sluggish but came around when Mom told him that he could play a game for a little while before breakfast. Again, continuing the attempt to make up for weight lost in the hospital, Chris ate his breakfast well, which consisted of 2 slices of pizza.

Chris attended church this morning, where his choir member fan came over to check on him afterwards. We exchanged greetings, and together learned that Chris' tumor as well as that of her husbands are growing again. She smiled and told Chris that he and her husband will just have to keep fighting together. A little while later, Dad joined Chris and Mom to watch the film, "Sky Captain and the World of Tomorrow." We all enjoyed the movie as it has a lot of excitement, technology, and was made like the movies in the 1940s. Those of you "Buck Rogers" fans out there will probably like this movie. Chris put a serious dent on a small (that isn't that small after all) bag of popcorn. He even got up during the film to get a refill on his medium size drink (which in a movie theater is actually pretty big for a little guy), perhaps because of the salt on the popcorn. He normally doesn't eat that much popcorn.

After the movie, we walked around the mall, as is our custom to get Chris to stretch his legs. Chris always checks out the game store and video store on one end of the mall and then goes to the bookstore and toy store on the other end. He did fine as he walked around the mall itself, although he did not have a spring in his step. However, by the time we headed back to our car, parked on the second floor of the garage, Chris was really beginning to drag. He wanted to take the elevator up, but Mom held his hand and escorted him up the flight of stairs that we usually take. She told him that he needed to build himself back up after having laid around a hospital bed for a week. He grumbled, but slowly climbed the stairs. He was a little drowsy during dinner, and even fell asleep in the car on the way home. However by the time he walked in the house, he became downright energetic and was able to complete the remainder of his homework. When that was all finished, he even had an extra 30 minutes to play his new video game.

Medically, Chris' energy level was still off a bit, especially as the day wore on, but he didn't require any pain medications. In fact at bedtime, Chris fluffed up his pillows, then for some reason, rolled off of them. He happily noticed that, "hey, my shoulder didn't hurt!" We can only hope that means that the Thalidomide is doing something and reducing the pressure on whatever nerve induces the pain. His appetite was closer to normal. There were still no "dog piles" today, although he did play ball with Genie for a few minutes.

Joke of the day -- (thanks Uncle Tom) -- Why do the French like snails? Because they don't like fast food.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, September 18, 2004 9:24 PM CDT

Hi Everybuddy!

Mom woke Chris up relatively early for a Saturday (9:30 -ish) as we try to get him back on the "school schedule." It didn't bother him a bit, but we do want him to be well rested. He ate a fairly nice breakfast today (ham and grapes), and did quite well with lunch (almost three slices of pizza). We're still trying to use his favorite foods to bring back the few pounds that he lost in the hospital. The highlight of the day though was, not unexpectedly, spending much of the day with his friend Greg.

Those two had worked out some sort of deal with which both sets of parents agreed. First Greg was to come here and then later the boys would go to Greg's house. Greg got over here and started playing a new video game before they moved on to go swimming. Here's where we got a bit of a surprise: apparently the drag of water force during swimming irritated the pain in Chris' shoulder. He wanted to get out of the pool within just minutes of getting into it. Chris required a dose of pain medicine, and with the gentle insistence of Greg, they stayed out there for a little while longer. Still, it was not nearly as long as normal, nor was the play as animated as usual. We tried to get him to stay out there for a little while longer, but the two "dolphin boys" only managed about twenty minutes in the pool. After some more video gaming, the boys were picked up by Greg's Mom for the second part of the day.

Chris headed over to Greg's house with some video games, some video cartoons that play on his GameBoy, and a barf bin. He didn't need the bin, but Greg's Mom was pretty cool about the need for Chris to carry one. Greg's family has been keeping close tabs on Chris and have been helping keep up his morale. When Mom and Dad stopped by Greg's house later to pick up Chris for the day, both boys seemed to have been tired out by the day's fun.

Medically, Chris' energy level seemed closer to normal. His appetite improved a bit, also. He still isn't feeling well enough to "dog pile" with Genie though and that's one of his favorite events. Chris needed only one dose of pain medication (Codeine) today as a result of his swimming activity.

Joke of the day -- (thanks Uncle Tom) -- What kind of car does Mickey Mouse's wife drive? A minnie van!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, September 17, 2004 10:30 PM CDT

Hi Everybuddy!

Chris had an "icky" start this morning. We could tell from the expressions on the nurses' faces that they were reminded of the "bad old days." He barely had the energy to walk from one room to the other. Mom went to the clinic today too since she had to review a videotape about his new medication, Thalidomide. Mom and Dad had a disappointing discussion with the oncologist. They are still "searching" for a supplemental drug to the Thalidomide in order to improve its chances of success, nor do they seem to understand the need for medical input from a variety of specialties concerning how to contain and treat the disease in Chris' liver. Chris slept through most of the discussion. Some of the sleepiness could be the result of the disease progression and/or medication effects, some due to getting him back on a school schedule (as opposed to a hospital schedule), and some due to the fact that Dad had to awaken him at 2:00 a.m. to give Chris a dose of an antibiotic (which of course can be disruptive to sleep).

After the clinic visit, we all stopped by Burger King to get Chris some of his beloved "cini-minis," which he normally inhales. Chris barely ate any breakfast, and immediately after swallowing most of his pills, he vomited. So, the thought was that the cini-minis would help fill his belly since a couple of hours had since passed. Today though, he barely touched them. On the other hand though, by then, Chris was ever so slowly beginning to wake up. After the "picnic," Mom (who had traveled in a separate car) headed for his school in order to fill them in on what's going on with Chris and make tentative plans for adjustments in his education needs, "just in case," while Chris and Dad drove right home since Chris was in no shape to be in a classroom. Dad fully expected Chris to take a nap since he was completely without energy, but instead he started in on a video game. He stopped periodically but he was alert enough to play. Hmm? Actually, Chris truly was in no shape to be in a classroom, so today was a "transition day" between the hospital and a normal schedule. We intend to try to wake him midmorning tomorrow so that he gets the experience of sleeping in a bit, but continues to adjust toward being able to attend school normally on Monday morning.

When Mom arrived back home, she ensured that Chris ate a halfway decent quantity of lunch (about 2 1/2 slices of ham with only 1 grape, but it's relatively healthy and was a greater quantity than he has been eating recently) before working with him on his rather extensive homework. Meanwhile, Dad went outside to work with our neighbor on cutting up a tree that fell over as a result of Hurricane Frances. Chris wasn't the least bit interested in watching that though. He and Mom worked for about 4 hours on quite a bit of homework; he was motivated by the hope that he might be able to spend most of the weekend goofing off with his friend, Greg. Occasionally, they would take a fifteen minute gaming break, but he trudged on through it. In spite of all of that, he still has another 6 pages of math to do at some point this weekend.

Chris received telephone calls from Grandma, Les, and Grannylyn and Granddad. He also received cards from Grannylyn and Grandad as well as "Aunt Cathy," so he was pretty happy today. Chris felt well enough to go out for pizza tonight, and we're willing to comply with all of the pizza requests this week since we've got to try to stimulate his ability to eat. He only ate most of one slice, as well as the cheese off of two other slices. While he was out, he went on a shopping mission assigned to him by Grandma. We took the opportunity to give Chris a long walk through the shopping center. Even Chris recognized the fact that his leg muscles had weakened a bit because he had spent the past week in bed, so he didn't seem to mind the walk as long as we went slow.

Medically, Chris' energy level seemed to increase throughout the day, at least until bedtime. When he gets tired now, he really is tired -- ready to drop. Chris still isn't feeling up to par, and didn't even try to "dog pile" with Genie. Chris needed only one dose of pain medication (Codeine) today. He felt the shoulder pain several times today, but was willing to try to work around it for most of the day. He just tries to readjust his position in order to lessen the severity of the pain. We hope that the Thalidomide will be effective and, at a minimum, will reduce the periodic pain he is getting. We understand that it will not likely be enough to handle the rapidly growing tumor all by itself, but at the moment, something is better than nothing in terms of trying to at least contain the damage.

We received a copy of the CT scan results, as well as that of the liver ultrasound. The bottom line there is that there is one tumor that is growing rapidly, and seems to have a "mass on top of a mass." We're still not really sure what that means (is it a complex tumor, or is there some sort of abscess on the tumor, etc.), but neither of those tests indicated any hematomas, as had been hypothesized. Since there is no longer a fever, the important part is doing something about that tumor. The other small tumor in the liver still shows up on the CT scan, and is still so small that no dimensions were given for it. No other suspected tumors showed up on the CT scan. The bone scan results are still pending. Chris hasn't completed his testing; another important exam in the MIBG scan, currently scheduled for next week. If we're very lucky, then maybe the only flare-up is this one liver tumor. Time will tell, but that's the news as we know it at the moment. Meanwhile, we'll keep working on what to do next.

Joke of the day -- What has eighteen legs and catches flies? A baseball team.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, September 16, 2004 10:49 PM CDT

Hi Everybuddy!

This day was full of changes. Chris is now home. He started Thalidomide (although it probably like trying to fight a forest fire with only a fire extinguisher). He finally linked up with his beloved Genie the Wonder Dog (who seemed happy to have a break from her wonderful nearly week-long slumber party with Hooch). He ended up undergoing a bone scan today, which had been previously scheduled for tomorrow. Dad was present and didn't see anything light up but for growth plate areas (that's normal), but we always let the radiologist do the real interpretation. Still, given the news that we've received recently, it was nice for Dad to not see everything light up. Chris also came off of the one general antibiotic at midnight last night. Because his temperature did not rise, he was given the green light to go home. Going home is not a cake walk this time. Chris continues to have shoulder pain, which is said to be most likely associated with the accelerated growth of his tumor. On the bright side, Chris' diarrhea is somewhat improved and much less frequent. Some antibiotics can induce diarrhea in some patients; it has happened to Chris before and may have been the culprit this time.

Chris awoke in a chipper mood this morning. After taking his other antibiotic, he went back to sleep. But he didn't get to sleep for long since he knew that the hospital teacher was coming to visit him sometime in the morning. We learned pretty early on that Chris was going to have two special visitors. Both are friends and Chris supporters from way back: Sylvia and Jessica. He was glad to see them (well, as glad as he could be considering that he was slightly drugged at the time). He was also very glad to see that they brought his favorite cheese pizza, of which he managed to eat two and a half slices today (big improvement!). Sylvia also left a wonderful lasagna for dinner later. Chris was disappointed when he learned that both ladies had brought their daughters, both of whom are too young to come visit the ward. The last time Chris saw either of them, they were very, very young. Now they are the ripe old age of about 1 1/2 years old.

The Nuclear Medicine Department had a cancellation today and asked if Chris wanted to get his bone scan done today instead of tomorrow. Dad said, "Sure," especially considering that we were there anyway and it opened up the possibility of Chris being able to attend school tomorrow. Not much later, one of its staff members came down with the radioactive isotope injection. Three hours later, Chris was scanned. All was well until he laid down flat on the scanning table. At that point, Chris' shoulder began hurting. The oncology ward responded by sending up a dose of pain medicine in an effort to allow Chris to complete the scan. By the time it arrived though, Chris (who was already in the scanner) told Dad that the pain had subsided. He completed the scan but needed the pain medicine as soon as he returned to his room.

Chris and Dad packed the room up, and once discharged, moved the "convoy" out of the hospital. We pack everything into big Rubbermaid bins and have a folding hand-truck with which we move them about. It may look a little "different" from the way others pack, but it works for us. We always seem to be prepared for emergencies and try to keep things set up the same way every time we're in the hospital, so to Chris it's sort of like being at home. Meanwhile, Mom returned to the Ronald McDonald House in order to pack up and clean up that room. It, too, is a big job because we travel "heavy;" the RMH room is something of a staging area for extra hospital room supplies, as well as having computer equipment (including a couple of makeshift computer tables). So, setting up, and packing up, takes some time. We are very grateful for its existence and its ever-supportive staff (they were filled in on Chris' goings-on, having known about him for the past 5 years).

The drive home went well up until the guys were a mile from home. That's when Chris then lost his lunch. He handled it very well and controlled the situation without making a mess. Emptying Chris' barf bin was Dad's first task after they guys arrived home. Chris wanted to go next door immediately to pick up Genie but Mom (who was traveling in another car and about 30 minutes behind Dad and Chris) hadn't arrived yet. She had some prizes for Hooch, Hershey D. Cat, as well as our human neighbors. Chris called her on the cell phone to learn where she was, and wound up staying on the phone with her for 17 minutes as he tracked her approach and giving Dad updates. Just after she arrived, we all went over together to pick up Genie and heard some great stories. Hershey D. Cat, we noticed, still doesn't want anything to do with Genie.

After things settled down at home, Chris got a call from Grandma and Grandpa, who learned that he was no longer at the hospital when they called there, as well as from his friend Greg. Greg wanted to know everything that they had done to Chris. Chris spared him most of the details and they started talking about some new games.

Chris had tried to "dogpile" with Genie, but he just couldn't do it because of his shoulder pain. They just had to settle on snuggling up together for a while. It's mind-numbing to think just how fast this disease can progress, even to the point of interfering with a boy playing with his dog, in just a few weeks. Chris needed some more pain medicine (Codeine) at dinner time. He also needed to have his pillows propped a certain way (with extra pillows to help keep him elevated) in order to fall asleep. But he was certainly tired at bedtime. Nonetheless, he continues to maintain a good attitude. We hope that the Thalidomide (along with hopefully another, as yet unidentified drug being added tomorrow) will at least contain the disease so that we can take better aim at getting rid of it. It's tough to do when the options are limited as they are now. However, Chris has been in very difficult situations before. If there's anybody who can work his way out of this, it's Chris. Hopefully tomorrow's clinic visit will be enlightening.

Joke of the day -- (from Uncle Tom) -- Teacher: Can anyone give me the name of a liquid that won't freeze? Pupil: Hot water.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, September 15, 2004 8:05 PM CDT

Hi Everybuddy!

Chris slept very late -- until about 12:30 p.m. Given the fairly high level of pain that Chris felt in his shoulder last night, and the fact that he could not eat all morning since he had been scheduled for a procedure to see what's going on in his liver, it was just as well that he slept. All in all though, Chris felt well today, even though we did not receive good news.

First, let's begin with last night. Chris had to continue dealing with more significant diarrhea, as well as some nausea. At bedtime, he asked for both anti-nausea medication and pain killer. His right shoulder was bothering him so much that he propped up his arm to try to immobilize the shoulder, and at one point he was in tears. Although he probably rated it somewhat higher than it actually was (we have seen his "level 10" before and he wasn't close to that last night), Chris said that his pain level in his right shoulder was a "9" out of a possible "10," meaning intense pain. He received codeine, and a little while later, he got a little more codeine. Eventually, he drifted off to sleep, which was no doubt helped by the Benedryl that he received to control the "itchies" that he felt after receiving the codeine.

This morning, Chris woke up long enough to urinate like Austin Powers again (providing his new personal best record of 500 ml), then went right back to sleep until about 12:30 p.m. He slept right through a visit from a family friend, Ingrid, as well as through a platelet transfusion (done in anticipation of the procedure). Mom eventually went downstairs to sign the consent form for today's procedure, and when she returned about 15 minutes later, Chris was wide awake and bushy-tailed.

As it turned out, the procedure was canceled at the last moment. The reason for the cancellation: Chris' fever seems to have completely broken (after having been on antibiotics since his arrival here), and because the most likely cause of his pain is his cancer. Although we have not yet seen the written reports, we have been informed that the liver tumor that was biopsied two weeks ago (which had grown "at least 10 times" in size from its previous measurement two months ago), has grown again by another 8 fold in just two weeks. Two weeks ago, this tumor was about 1 cm (about 1/2 inch) in diameter. Now it is roughly 8 cm (about 4 inches) in diameter. That particular tumor's size and location is now believed to be the cause of Chris' pain.

We do not yet know the complete extent of Chris' disease since he still has more of his usual quarterly tests to undergo (they were regularly scheduled for the end of this week and early next week). But we do know that obviously the neuroblastoma is raging at the moment. It is the first time since the day of his diagnosis on May 25, 1999 that Chris has experienced pain directly caused by tumor growth.

Chris was present during this conversation with the oncologist. As soon as she left, Mom briefly explained to Chris that his "surgery," as he called it, was canceled because his pain is apparently being caused by the cancer, so there was no reason to undergo it. She also said that just as soon as the medical folks believe that he won't spike another fever, he'll begin anticancer treatment again. Chris took it in stride like it was no big deal, just like he always does.

So, the plan is to take Chris off of the antibiotics beginning at midnight tonight. If he does not spike a fever, then he will probably begin taking the Thalidomide tomorrow, after the doctors are convinced that Chris is well enough to handle it. Obviously, we have to start something immediately if Chris is to have any chance of being able to beat his cancer back into submission.

The good news though was that Chris felt pretty good all day today. His diarrhea is slowly becoming more solid. As soon as the "NPO" instructions were canceled, Chris wanted to eat. He did, too. Over the course of the afternoon and evening, he ate about 1/2 of his usual consumption, which is much better than he has eaten all week. That was reflected this evening, when he stepped on the scale. He only lost 1/10th of a kilogram, which is pretty close to stopping the weight loss. If we're lucky, he might be able to start reversing it tomorrow since he does have an appetite.

Chris passed the time playing video games, watching TV (he invited the child life therapist to come back for a 3-D movie at 5 PM; she returned and stayed for about 45 minutes), looking at Genie pictures, and thinking wistfully about "dog-piling" with her, etc. He also talked briefly with Grandma and Grandpa, but by then he was a little tired.

Joke of the day -- Where do sheep get cleaned up? In the baaaaa-th room.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Night Genie! He'll be home just as soon as he can!

Love,

Chris, Alison and Pat

Tuesday, September 14, 2004 7:48 PM CDT

Hi Everybuddy!

Chris had a much nicer day today, but he's still not exactly back to normal. The medical folks at first eliminated the possibility of a hematoma since yesterday's CT scan of his chest, abdomen and pelvis did not reveal such. They have eliminated any sort of hidden sinus problem as the cause of the fevers after reviewing the results of Chris' CT scan of the head, which was done today. Chris was doing his best to "stump the doctors" in terms of what's the matter with him. The "art" part of medicine is again leaning back towards the theory of a hematoma associated with last week's liver biopsy procedure. Upon further review of the CT scans, the radiologist who did last week's procedure and the oncologist believe that they've found something, so Chris will undergo yet another procedure to identify if there is a problem. If so, a drain may be inserted to drain away the hematoma and then treat it with an antibiotic. Dad explained it to Chris who was ok with it all.

Dad took a brief break today before taking over day shift again since Mom had some things to which she had to attend at her office, Chris' school, as well as at home. The house looks like it's still as ready as its going to be for any winds associated with Hurricane Ivan (for those of you out of the area, yes, the winds are picking up a bit but are not bad). Mom also was able to visit with Genie, who is having a grand time playing with her best buddy, Hooch. Mom told Chris later that she watched the dogs pass the tennis ball back and forth between each other, "handing" it from one dog mouth to the other. Chris was happy to hear that and has been entertained with the photos of the two dogs that our neighbor has been sending.

Today's big medical test was the CT scan of the head. They were looking for a sinus problem (and cancer) but didn't find anything. Generally Chris "fever" remained lower than on previous days, staying in the high end of the "normal" range. Chris still feels abdominal pain, especially on his right side, as well as along his sides and his right shoulder. In fact as the day wore on, the shoulder pain became more pronounced. His most current "C. diff." test shows a happy negative with two of the three tests elements. Although when Chris arrived here, he had soft stools but no diarrhea, but now he has comprehensive diarrhea; the current diarrhea symptoms reminded Mom and Dad of the last time Chris had C. diff., yet now he tests negative. Go figure!

As mentioned above, the current medical thought is back to the theory that Chris may have an infected hematoma (pool of blood) as a result of last week's biopsy. One team didn't see anything on yesterday's CT scan and one team did. The outcome is that Chris' liver biopsy site will be probed again tomorrow.

Chris' hospital teacher came today, and since they didn't have a good grasp of what he needed to do for "real school" homework, they made some stuff up that was pretty challenging. Chris had a good time and tomorrow's lesson will be more organized since Mom picked up Chris' assignments from his teachers today.

Chris had a lot more energy today and picked at more food. His food of choice now is peanut butter and jelly sandwiches, chips, and grapes. He needed a lot of energy today since he was visited by our friend Les and one of his friends from work. Les never lets any moss grow on Chris, so they exchanged barbs and goofed off. Chris also received a couple of phone calls from his friend Greg. They mostly spoke about games and trying to decide which of them was suffering the most: the kid in the hospital or the one in school.

Medically, Chris had a much better day and was more "Chris-like," even though he's not quite back to normal. Other than some pain, his biggest problem was diarrhea in earnest. His temperature remained on the high side of normal all day. Chris was in a good mood throughout the day. He was able to slow down the weight loss a bit, but he's still losing.

Joke of the day -- How did Benjamin Franklin feel when he discovered electricity? Shocked.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Night Genie! He'll be home just as soon as he can!

Love,

Chris, Alison and Pat

Monday, September 13, 2004 8:25 PM CDT

Hi Everybuddy!

It was big test day for Chris as once again the facts shows that practice of medicine is as much an art as it is a science. The doctors have a pretty good grasp of Chris' symptoms and now they are in the process of matching the right test to the symptoms to discover the actual cause. Today, Chris was underwent an ultrasound of his abdomen and later a CT scan of his chest and abdomen. As a repeat of previous days, Chris' fever took some ups and downs throughout the day. Generally, the fever stayed lower than previous days but it did hit an all time high of 39.6 C. Chris still feels abdominal pain, especially on his right side, as well as along his sides. He is especially sensitive to certain touches and moves, particularly when he rolls over or gets up out of bed and walks.

The current thought is that Chris may have an infected hematoma (pool of blood) as a result of last week's biopsy. (As you will recall, Chris' liver did bleed a little bit during the procedure.) It did not show up on yesterday's x-rays nor on this morning's ultrasound. However, the CT scan was expected to be more accurate since its "pictures" are taken in "slices," which should be able to expose the suspected hematoma (or other problem).

A bit of good news is that Chris' lab test for "C. diff." tested "positively" for the antigen only, but "negatively" for the "toxins." This might mean that he was exposed to the germ in the fairly recent past but doesn't necessarily have it at the moment. The isolation procedures (people don gowns and gloves before coming to visit him) are still in place for Chris, and he will continue to receive medication for it because, in the immortal words of the oncologist, "it won't hurt." C. diff. most commonly causes diarrhea as its primary symptom, which Chris did not really have until today. Both parents and the medical staff had believed that there was something else at work in Chris, since he has had C. diff. before but never with pain. Thus, we hope that the CT scan will show what the problem is so that it can be addressed and so that Chris can get back to feeling like Chris again.

Chris had a little bit of energy today. He slept in very late (10:45 a.m.), and even then he had to be awakened for his ultrasound test. He got off to a slow start, but once he returned from the test, he played a couple of new video games on a new machine that Mom found in the hallway of the oncology floor. He played some games against Mom, too. Chris received a return call from Grannylyn and Granddad, who had missed his "Happy Grandparents Day" call yesterday. Sadly, that call was interrupted by the arrival of the infection control doctor and a herd of interns. They basically arrived to get the "lessons learned" from Chris' recent experiences. Other than that, Chris watched "Finding Nemo" and "Harry Potter: The Chamber of Secrets."

Dad came back from his hospital break with some reading material for Chris: Archie, Jughead, and Cartoon Network magazines. Chris also had a visit from his hospital teacher, but she couldn't stay today. Since she was already booked solid today, she just came by to socialize. She will be stopping by tomorrow for class.

Medically, Chris had another rough day, which he handled pretty well again. Today, he started having diarrhea in earnest. His temperature has fluctuated all day. The high temperature today was 39.6 C (103 F). He had less physical shivering but he still had some cramping and abdominal pain when breathing, and nausea. Chris was good mood throughout most of the day, but is feeling weaker. Chris has been losing weight throughout this stay, to the tune of about 4.5 lbs since Friday. As soon as he gets some food he wants to eat (like Papa John's pizza), he gets nauseated. That in turn makes him feel frustrated because he wants to eat, but he can't. Hopefully tomorrow will be better.

Joke of the day -- Why did the teacher jump into the lake? Because she wanted to test the waters.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Night Genie! Thanks to you, Hooch and Hershey for writing to Chris! He'll be home just as soon as he can!

Love,

Chris, Alison and Pat

Sunday, September 12, 2004 8:41 PM CDT

Hi Everybuddy!

It was dynamic day for Chris: he had to move rooms, get chest and abdomen X-rays, and deal with the symptoms related to his fever. As with yesterday, Chris' fever took some ups and downs throughout the day. One of the nurses didn't like what she heard (well, actually, what she didn't hear) when she listened to his chest. That, along with Chris' continuing (and somewhat intensifying) pain along his sides, triggered the requirement for a series of three X-rays. As noted yesterday, the only lab test result of any significance is the one that shows that Chris tested "positive" for the "c. diff" antigen. Chris was moved into a single room so he could continue to be in isolation, thus making his former room (a double) available for other patients. Having said that, we are happy to note that the oncology ward is as vacant as we've seen it in five and half years (it tends to fill up on Mondays though since many chemo cycles begin on Mondays).

Chris had a little more energy today and was able to play a computer game. That however demonstrated that Chris is not feeling himself since his abdominal/side/back pain prevented him from leaning forward to use the computer keyboard. Thus he needed assistance from Mom. Anybody familiar with Mom's complete lack of video gaming skills would know that Chris would not have asked for that sort of help unless he were not feeling up to snuff. In fact, it was frustrating for him and he went back to bed. Almost every time he got up out of bed or otherwise changed position, Chris moved very slowly due to pain, which he rated as being "5" on a 1 - 10" scale. His other activities included starting work on his bamboo wind chime project and watching TV. Dad brought in a new cartridge for his GameBoy that plays some cartoons. He also brought in a new travel Scrabble game, which Chris, Mom and Dad played. With a little coaching, Chris ended up winning! Chris also did some "research" on the Internet about the new video game "Tak 2." Chris placed a brief phone call to both sets of Grandparents to wish them a Happy Grandparents Day.

Medically, Chris had another difficult day that he handled pretty well. His temperature has fluctuated all day, depending on when his Tylenol is given (rising as the previous dose wears off and dropping after a new dose is given). The high temperature today was 39.4 C (103 F). He had less physical shivering and nausea, though he still had to combat it. He still had some dizziness, cramping, abdominal pain when breathing, and vomiting. Chris was good mood throughout most of the day.

Joke of the day -- What do you call a surgeon with eight arms? A doctopus.

Actually, there was another "humorous" (well hospital humor) incident today. When Chris awoke this morning, he had to urinate. After a bit, Dad joked that he must have had to go to the bathroom like the character Austin Powers of the Austin Powers movie when Austin is awakened from a cryogenic sleep. The room curtain was drawn and during the process, the nurse came in and waited until Chris finished. Like in the movie, it turned into quite a wait! He ended up contributing 450 ml to the fluid balancing calculation (they keep track of fluids go in and out of patients). For those of you not familiar with such things, 450 ml is a quite a large amount for a 10 year old. It was apparent that all three of the people in the room had seen the movie because they all shared a good laugh over it.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Night Genie!

Love,

Chris, Alison and Pat

Saturday, September 11, 2004 9:25 PM CDT

Hi Everybuddy!

It was an interesting day for Chris, who saw his fever take ups and downs. At one time, it got up to 39.65 C(103.3 F), and came close to that at least 3 times. With those ups and downs were corresponding increases and decreases in Chris' energy level. We also learned that one of Chris' lab tests tested positive for "c. diff," an ornery germ that requires Chris to be in isolation, take antibiotics, and cause the medical staff to wear special garments. We're not sure where that came from as it's been over three years since he's had it before. It may have been "lingering" in his body but suppressed by his immune system, or it could have been picked up while he was in-patient last week for the liver biopsy (it's a fairly common hospital-borne infection because it's so contagious). We'll ask the doctor about it tomorrow. Fortunately, the antibiotic is a capsule so it can be administered at home. After a few days on the antibiotic, he can probably attend school, but we'll confirm that, too. In that regard, Chris' school has been closed for Monday in anticipation of the approach of Hurricane Ivan.

When Chris had the energy (that was more often than not), Chris played video games, drew, and watched TV. Dad brought in a book on how to draw cartoons and then Mom later brought in two arts and crafts projects. Chris also did some "research" on the Internet. One thing that was pretty cool was Chris and Cate occasionally sending immediate messages back and forth. They ended up stretching immediate message technology sending electronic "Critters" back and forth to each other.

Medically, Chris had a fairly tough day. His temperature has fluctuated all day. He still has his fever (as of 10 p.m., it was 39.2 C (102.6 F), but is resting peacefully. Periodically, he has endured significant physical shivering, nausea (in his words, "not the normal kind but 'on-the-edge' nausea"), dizziness, cramping, abdominal pain when breathing, and vomiting. In addition, when the doctor came to visit him this morning, she lightly touched his belly and liver areas to see about his pain. Chris never specifically told her that anything hurt, but the welled up tears in his eyes clearly conveyed that the right side of his belly and the area around his liver biopsy site were painful. It took about 10 - 15 minutes before he completely calmed down over that. When he heard that there might be an infection, he whimpered to Mom that he remembered that one of his friends had died of an infection. Mom told Chris that 1) lots of people get infections for lots of reasons, 2) the overwhelming majority of infections are "fixed" without any big problems, and 3) that particular child had a different kind of infection and was much sicker than Chris is now at the time of his death. Chris calmed down after that, and didn't seem to worry about that anymore. We know that he's got at least the "c. diff." infection. Chris was generally in a good mood whenever his fever was under control, but he's been unusually quiet all day.

Joke of the day -- Why was the broom late? It over swept.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Night Genie!

Love,

Chris, Alison and Pat

Friday, September 10, 2004 9:36 PM CDT

Hi Everybuddy!

Well, we're back in the hospital due to a fever. There was no "apparent" cause and it eventually got up to 39.69 degrees so we were invited to come to the hospital where we may end up riding out Hurricane Ivan. Hmm.

Chris woke up well enough but during breakfast, he asked Mom to take his temperature. Sure enough, he had one albeit a low grade fever. The guys headed for school and Chris did his safety patrol thing as Dad signed him out from class. When they got to the clinic, his temperature read normal although he didn't necessarily act that way. Since we had a very long clinic as Dad had to watch some videos about Chris' new medicine: Thalidomide, they took his temperature again and it had risen. The told him, "No school" and sent him home on fever watch.

Chris rested at home and took a nap (rare). When Dad came in from doing some "hurricane preparation stuff" and Chris had finished lunch, Dad took his temperature and it had risen to the magic number for calling in. We did and were told to head to the hospital. Although the guys had the camper loaded in short order, we had to wait for the hospital clearance to go in and that came a few hours later.

Needless to say, having to leave the house right before a hurricane wasn't high on anyone''s list and even Chris wasn't eager to go to the hospital. The guys stopped by the Tampa clinic on the way to the hospital as the highly controlled drug Thalidomide had arrived for Chris. The doctor put giving Chris the drug on hold until his fever breaks but we physically have it now. His cancer got yet another break.

Getting into the hospital went like clockwork and Chris got to see his beloved Nurse Nancy. She and he traded barbs as usual. They took a variety of blood samples and Chris and Dad were surprised to learn that this time they wanted to get a sample from a peripheral site which means that Chris had to get either a hand or arm poke. It is the one thing he really dreads. He got really anxious but Dad calmed him down and got the nurse to spray his puncture site with "freezy spray" before she put in the needle. He calmed down and it worked. He was pleasantly amazed and pleased with himself (as was Dad). She said that she is going to start carrying some "freezy spray" around on her tray from now on.

After that experience, they started him on one general antibiotic and he picked at dinner. He mostly watched some cartoon TV specials and fell asleep while doing so. He was asleep before Mom got across the bay as she had been at work and had some last minute things to get from the house, make sure it was ready for the hurricane, and move Genie next store where she will be raising havoc with her friend Hooch. As this came as a surprise and all the kennels are either evacuating or full, our neighbors came through and took in Genie (thanks Deb and Mike). One thing is for sure, even if a hurricane comes again. Genie will be having a great time (as Genie and Hooch are two party animals).

On the school side of life, Dad filled out Chris' paperwork to join the chess club and to get tested for the gifted program. His teacher came to the same conclusion as did his teachers from last year.

Dad told Chris that as of today, his website had been visited over 80,000 times. Chris was staggered by that number and wanted to say thanks to everyone who has visited. So, "Thanks!"

Medically, Chris had really weird day. He was a lot more active than his temperature should have permitted. He still has his fever but is resting peacefully. We hope that this isn't associated with his enlarged lesion in his liver.

Joke of the day -- Why did the cannibal live on his own? He was fed up with other people!
Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Night Genie!

Love,

Chris, Alison and Pat

Thursday, September 9, 2004 9:28 PM CDT

Hi Everybuddy!

Chris had a normal kind of a day. The most exciting aspect of it was bringing his lunch to school (hmm, some excitement). The air conditioning in the school was functional again but the cafeteria was still a little slow in getting fully operational. Chris simply commented that he had a good day today.

Chris got some good news today, too. The first was from Grandma and Grandpa: Grandpa is already back home after having had surgery last week. The speed of his recovery almost rivals one of Chris' surgical recoveries. Unlike Chris though, Grandpa just isn't a big fan of the hospital.
The other piece of good news is that Chris will begin receiving the drug Thalidomide. Dad is required to watch a medical warning video tape, fill out a survey and then sit down with the doctor. But the drug is on hand. Thalidomide is a focus of over sixty clinical trials, most of which have it in combination with a chemo drug. We're hopeful about what this drug might be able to do for Chris. We're still looking for some intermediate successor treatment to the Thalidomide, too.

Once Mom got home from work this evening, we decided to go out to dinner as we had some more "hurricane supplies" to bring in (people are taking Hurricane Ivan very seriously here -- the stores aren't able to restock after the last hurricane fast enough to meet the demands for the approaching one). Dad had been out all day cleaning up from the last hurricane, so going out to dinner seemed like a good idea even to Chris.

Medically, Chris had another normal day. Doesn't that sound nice?

Joke of the day -- New math: What is a polygon? A missing parrot.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Welcome home Grandpa!

Love,

Chris, Alison and Pat

Wednesday, September 8, 2004 9:33 PM CDT

Hi Everybuddy!

Chris stepped back into time today and learned what it was like to attend school without air conditioning, just like Mom and Dad did back in the Dark Ages. Dad had dropped off Chris, then went to put together the equipment the students use to broadcast "The Morning Show." It had been disassembled while the school was used as a shelter for hurricane evacuees this past weekend. Unfortunately, someone had damaged one of the devices, so Dad worked on trying to find out which device was inoperative. Everyone then learned that most of the school's air conditioners weren't working. The principal had sent someone out to buy some fans, so Dad and a couple teachers began assembling fans that were then placed in the classrooms. The stores had run out of fans unfortunately, so Dad went home and got every fan from our house (we've been lucky enough to have maintained power throughout the storm, so our air conditioner has been working), one of which went to Chris' classroom. Chris and the gang were happy to see it, too. Dad finished his work of fixing things just as Chris finished school today.

One of the casualties of the hurricane was the school's cafeteria. The school ended up feeding the kids cheese sandwiches, which were not a "Chris favorite." Dad asked Chris if he wanted a "dunch" after school; Chris jumped right on that. The guys then went shopping so that Chris could take a packed lunch to school tomorrow. Once home, Chris took a short break before moving
right on to work on his homework. Dad was pleasantly surprised to find that Chris and his social studies classmates are now learning how to read latitude and longitude. Later, Chris watched TV and played with Genie while Dad did some more hurricane cleanup around our home. Mom thankfully brought in dinner.

Medically, Chris had another pretty normal day despite the heat in the school. He told Mom that he got so hot at one point though that he couldn't concentrate. Later at bedtime, Chris had the usual bedtime stomach cramps, for which he took some Benedryl. Around the same time, he told Mom for the first time that he has been having stomach cramps several times a day. Mom had been under the impression that the cramping only happened at bedtime, but it's actually been going on several times a day for a while. It happened while he was on "guard duty" at school today. Mom asked Chris to try to remember (or write down) whenever the cramping begins, beginning tomorrow so that we can get a better idea of the extent of what he's been enduring.

Joke of the day -- (thanks Uncle Tom) -- Did you hear about what happened at the laundromat last night? It was tragic. Three clothespins held up two shirts.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, September 7, 2004 9:26 PM CDT

Hi Everybuddy!

Chris had to get up early this morning despite not having school since he had a clinic appointment. After breakfast, the guys headed over to the Tampa Clinic for a blood test. The blood testing machine was inoperative due to some flux in power that occurred during the hurricane, so the test results were passed to Dad later in the day. Chris' blood counts were: white blood cells (not reported) (normal: 4.0 - 12.0), hemoglobin dropped to 12.3 (normal: 11.5 - 14.5), platelets dropped to 56 (normal: 150 - 450), while his ANC rose to 2500 (normal: 1400 - 7400). Chris' platelet level was just below the "Papa John's threshold," so no pizza from there today.

Today was a big clinic day as we signed the consent form enrolling Chris in a vaccine study at Texas Children's Hospital (the vaccine won't be ready for at least four months). Dad, our doctor here, one of our nurses, and the doctor in Texas had long discussion over a speaker phone concerning Chris' treatment there and the strategy we want to pursue to get there. Dad also spoke with them about some of the alternative stuff we've been giving Chris to ensure that they won't interfere with her program. They won't, and we were encouraged to keep on giving them to Chris since something keeps him looking and acting healthy. Chris was in there as usual, and despite hearing a few things that he didn't understand and were a "concern" for him, he remained really quite. After the conference call, we answered all of Chris' questions to his satisfaction. Everyone also agreed that the Texas crew sounds very friendly, so when the time comes, Chris and Dad will have to go there with plenty of happy face pins.

The Texas doctor endorsed the plan that we have for Chris' overall treatment, particularly giving Chris Thalidomide as soon as possible. Some of you may recognize it's name since it is a drug with a sordid history. There are some briefings that the doctor must receive before she is allowed to prescribe the drug. It has been found to interfere with a cancer cell's ability to gain a blood supply or Thalidomide may stop the growth of cancer by stopping blood flow to the tumor. The drug is currently involved in over 62 clinical trials, so that's encouraging. It's use would be an immediate step as we try to get Chris ready to participate in clinical trials that are soon to open. His blood counts are currently too poor to participate, so the hope is that the Thalidomide will both control his cancer while permitting his marrow to recover.

Dad had to do some last minute coordination between three sets of doctors to get
information to the appropriate people and everyone willingly did what they had to make things fall into place. Again, Chris was very calm during the whole Dad/medical staff discussions. Once the phone call was over, Chris asked some questions that showed to everyone that he had been listening. They were good questions (e.g., how does it work, and how much blood will they need to take from him, etc.), for which we fortunately had answers. As usual, Chris is willing to try anything as he is in this war for the win.

After the clinic visit, Dad decided to take him out to lunch and get him a present since he was very "cool" about the whole discussion and during the drawing of blood in numerous test tubes. Texas tests for just about everything in this study, including exposure to West Nile virus. Dad was quite impressed since Chris spent most of the time looking at departing blood (he doesn't like looking at blood) and yet was joking around with the nurse.

Chris had a great time after the clinic and shopping: his friend Greg got to come over here for a visit. Greg also brought some of his Mom's cookies that Chris has always called "special" cookies. The two played a lot of video games and spent over an hour in the pool trying to drown Dad. As usual, they were unsuccessful, although they did give Dad a run for the money. Greg invented a new "dive" as he'd move into a diving tuck once Dad threw him up in the air (fortunately, these boys are still light enough for a good toss). Chris liked it but was reluctant to try to emulate Greg's move. They were very impressed with Chris new spy watch. Dad learned the hard way that it can be placed in the "sensor mode" and will alarm when you get too close the thing.

After Mom got home from work, we went to dinner and made a run to the supermarket. The store is still a little empty; its distribution center was also in the line of this weekend's hurricane. As soon as we got home, we called Grandpa, who is still in the hospital. He sounded a little drowsy (that's pretty normal in a hospital) and he told Chris that he had been out walking twice today (very important after surgery). When he gets back home from the hospital, we think that the two of them will have a long talk exchanging hospital stories.

Medically, Chris had a pretty normal day.

Joke of the day -- (thanks Uncle Tom) -- Why are some fish at the bottom of the ocean? Because they dropped out of school.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, September 6, 2004 9:29 PM CDT

Hi Everybuddy!

It was another "stay-in the house" day for Chris. Dad and Mom made it outside to begin the process of cleaning up the neighborhood with our neighbors. The major casualties at our home were that a tree that harmlessly fell over into the neighbor's yard (it had grown on the edge of the conservation area or "swamp"), and our Norfolk Island pine tree listed heavily to one side (it's now been righted again). There is one tree at the edge of the swamp that is shaped weird; the way that it has grown has given it a strange center of gravity which we thought would have caused it to have fallen over, but it is still standing today. Chris was impressed by the size of the tree that fell over. Other than that, there were lots and lots of smaller to medium sized tree limbs, along with plenty of sticks and leaves that need to be cleaned up.

Chris spent the day playing video games again. When Mom asked if he was bored with them yet, Chris said, "Nope!" He must have come upon something difficult since at one point he asked to call Uncle Jonathan for gaming advice.

Chris ate well today and learned that he likes wheat bread today, after having been a white bread kind of a guy all of his life. He got in quite a few play sessions with Genie, who was beginning to get stir crazy despite Mom having taken her on her long walk today. Chris and Genie were really funny after dinner as Chris and Genie played keep away -- around the sofa. Chris ran behind the sofa, trying to keep it between Genie and him (and her rope toy, which he had in hand). She barked at him and he laughed.

Medically, Chris had no problems today, but for some nausea at bedtime. Zofran was needed to help him get back under control. Chris was happy to learn that Grandpa was doing well after his surgery though and is even back in a "normal" room.

Joke of the day -- (from Uncle Tom) -- Why was there thunder and lightning in the lab? The scientists were brainstorming.

Dad added some photos to Chris' website. Most of the pictures are from Chris' most recent stay in the hospital. You can see that he is suffering (not)! We hope that he will always enjoy his hospital visits since it certainly goes a long way in making his treatments more effective and tolerable.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, September 5, 2004 10:33 PM CDT

Hi Everybuddy!

Chris slept in very late this morning, with there being no point in waking up early on this hurricane day. He awoke by himself then went into the den to play a video game. He's been sleeping a lot later in the past few days than he normally does. When Dad linked up with him, Chris offered to go back to bed so that Genie could "wake" him up, but she was already sitting on the coach watching him play. Today Dad may some cinnamon buns (one of Chris' favorites). Chris thought that it was good that Cousin Jane wasn't staying with us today since she dislikes cinnamon.

Of course, the day was marked by the passage of Hurricane Frances, which was downgraded to a tropical storm. Neither Chris nor Mom had ever experienced a hurricane before (well, there was Hurricane Opal in Atlanta a few years ago, but somehow that was different since Atlanta's so far from the coast). Dad has some experience with them though. This was one of the most unique hurricanes that Dad has ever been through: it has been slow and prodding, and even as Frances' center was departing Florida's west coast just north of here as a tropical storm, Florida's east coast is still being affected by the storm.

Today we saw an impressive display of nature's fury, but thankfully, not very destructive in our section of Tampa. We can see that there will be a lot of clean up effort for the small to medium sized tree limbs and leaves, but from our windows it appears that most of our neighborhood has thusfar survived relatively unscathed. Having said that, local meteorologist believe that our area will still be subject to strong winds and rain for at least another twenty hours as Frances (probably as a hurricane again) works its way up the Florida west coast, soaking up moisture from the Gulf of Mexico.

Chris has handled the day extremely well. He has not been overly anxious nor bored. He's played video games throughout the most of the day, stopping for meals. Mom has been sitting with him throughout the day. He enjoys it when someone watches him play, and Mom did some of it through closed eyelids. (To be fair though, she had been up at 2 a.m., trying to get as much information into Chris' medical matrix before closing down and moving the computer away from the glass windows where she normally works. She also filed away medical and insurance documents into a large plastic file box -- heaven forbid that all of that information and work blow away out the window!) We also watched a couple of Star Wars movies. The idea was to pass as much of the day using these electricity-dependent machines until we finally lost electricity, when we figured that we would switch to Game Boy (until the battery died), reading and board games. As it turned out though, with the exception of 3 - 4 very short power outages (each of them lasting under a minute), we have maintained power all day. Thus, the video games and movies continued.

Not unlike a little over two weeks ago when Hurricane Charley brushed by Tampa before proceeding north to Grandma and Grandpa's house, Hurricane Frances is forecasted to head through Kentucky, near where Grannylin and Granddad live. Mom, Chris, and Dad mentioned that to them today, as they called in to learn whether or not we had floated away. Of course, our thoughts and prayers remain with our family and friends who live in this state. Although we have been lucky thusfar, we know that others have not been, so we hope that everyone is safe.

Uncle Jonathan also called in and after checking in with Mom, ended up talking to Chris for quite some time (probably Chris' longest phone call ever). They are both avid video gamers and Uncle Jonathan has often coached Chris through some games. Today, it was Chris turn to give Uncle Jonathan some insights on a game.

Medically, Chris had a nice day save for one bout of diarrhea and the usual evening stomach cramping. He had no other problems.

Joke of the day -- (from Uncle Tom) -- What did Geronimo say when he jumped out of the airplane? Me!!!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, September 4, 2004 10:40 PM CDT

Hi Everybuddy!

Chris slept very late this morning; only a phone call from his friend Greg got him going. Shortly after that call (and a quick breakfast), Greg came over and the two had a great time. After playing a video game for a short while, the two headed outside for a dip in our pool. Aside from being a bit on the breezy side, the weather was perfect and they wanted to get some swimming in before the first outer band of wind and rain from Hurricane Frances arrived. If the two kids were at all nervous about a hurricane coming soon, they didn't show it. Since Chris platelet counts were above "60," he was able to have Papa John's pizza (it's a bet with Dad), which is also a favorite of Greg's. After swimming, the guys came in and played more games until Greg's Dad came to pick him up. The two guys saw each other again at church this evening. Church was packed tonight as most of the congregation headed there tonight in lieu of battling the hurricane that is expected to be here tomorrow.

Mom and Dad did last minute things in preparation for the hurricane's arrival. It is really a peculiar storm and is now forecasted to head right for us after moving across Florida's midsection. We're about as ready as one can be, but for boarding up windows (that's still on the "to do list" in the future, depending upon how the actual conditions develop). Chris was a little nervous about the storm as we went out to dinner (Mom wanted to go out since it is likely we're going to be locked inside for a while), just as the third outer band arrived in our neighborhood. Unfortunately, while we were out this afternoon and evening, we apparently missed an important call from Grannylin and Granddad's home, where all of Chris' cousins from Kentucky had gathered. Sorry about that! Before that though, Chris was able to say hello to Uncle Jonathan, who had called to see what's going on down here.

Since the bands are traveling fast, the effects don't last long, but they have already disrupted the power temporarily. In fact, Mom and Dad had a little chuckle over how the power went out before the storm has even really arrived. Fortunately, it came back on fairly quickly, and conditions have been stable (although quite breezy outside) so far. In fact, at 11:30 p.m. tonight, it is mostly cloudy outside, but stars can still be seen.

As a reminder, it is possible (in fact, we'd guess "likely") that we may lose electrical power at some point tomorrow. Do not be alarmed if you do not get an update tomorrow. We will catch you up on the details with a "Chris Update" as soon as we can.

Medically, Chris had a nice day with no problems.

Joke of the day -- (from Uncle Tom) -- How do you make a hot-dog stand? Steal its chair.
Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, September 3, 2004 10:39 PM CDT

Hi Everybuddy!

Despite not having school, Chris still had to get up early this morning since he had a clinic appointment. After breakfast, the guys headed over to the Tampa Clinic for a blood test. Chris' blood counts were: white blood cells rose to 3.6 (normal: 4.0 - 12.0), hemoglobin dropped to 12.5 (normal: 11.5 - 14.5), platelets dropped to 64 (down from 146 in one day - normal: 150 - 450), while his ANC rose to 1700 (normal: 1400 - 7400). We were hoping to see the platelets hang in there at around at 90, but this just illustrates how depleted his marrow is at this time.

Dad and the doctor had a long discussion in the exam room today; Chris was in there as usual. It seems that the doctors are leaning towards a new approach, at least until other treatments become available. This new approach involves using drugs (like Celebrex) to cut off the blood supply to the cancer cells. This is not a "sure-fire kill cancer" agent but it could be used to impede his cancer's progress (growth) and still allow Chris' marrow a bit of time to recover. The treatment may begin as early as next week.

Dad and the doctor came to an understanding that the next treatment plan would have a more strategic view, involving an immediate treatment, mid-term treatment (aimed at attacking his "sanctuary site," namely in the liver, along with other treatment options (i.e., RF or cryogenic surgery), and longer-term treatment options (like the vaccine study). So far, Chris' cancer has been able to be controlled more like a chronic disease -- as long as we can keep it from flaring up acutely. There still is some reluctance or confusion in formulating a "liver team" like we want. We believe that Chris needs an interdisciplinary approach that capitalizes on the expertise of several medical fields: such as oncology, surgery, as well as a pediatric liver expert and perhaps an immunologist, in order to develop truly viable treatment options. The idea is to be able to take maximum advantage of any "windows of opportunity" that come up whenever his cancer has been reduced sufficiently to provide treatment options as large of a margin of success as possible. We may have recently missed such an opportunity with the "big lesion" to remove it using RF surgery before it started to grow again. We really don't know. If there was such an opportunity, it has been lost now. The important thing now is to be alert to the possibility of future such opportunities and taking advantage of them. Our matrix impressed the doctors, but at least one of the oncologists didn't understand its whole intent and utility (since we have run into the "we-don't-know-what-to-do-next" scenario before with different hospitals, we think that this sort of planning may be a gap in medical field that could use some attention so that others do not have to face what we have had to -- on several occasions). This particular oncologist though acknowledged that the matrix may prove useful in the search for a new treatment for Chris.

We received some good news today. In order to qualify for entry into the vaccine study, Chris needed to have been exposed to a certain virus at some point during his life because that virus is somehow being used in the vaccine process. Lab test results indicate that he has been exposed to the Epstein-Barr virus (who would ever have thought that we'd be happy to know that he was exposed to the same virus that is responsible for mononucleosis? It's a mad, mad world!). Blood will be drawn on Tuesday in order to be shipped to Texas. The idea is to use Chris' blood to help grow a vaccine against Chris' specific disease. We hope that this will wind up becoming his long-term treatment option. It takes at least 4 months to develop the vaccine, and even then, one never knows whether the vaccine will "grow," much less be effective for him. Nonetheless, the answer is automatically "no" if we don't try. That effort starts with a vial of blood to be shipped next Tuesday.

Chris was very calm during the whole Dad/doctor discussion this morning, even though the topic of his survival was mentioned. As they were leaving the clinic, Chris asked Dad some questions that showed that he had been listening, even though he was reading a game strategy guide at the time. Dad decided to take him out to lunch and get him a present as he was very "cool" about the whole discussion. Frankly, Dad was quite impressed -- it's not easy for a child to listen and wonder about the chances of his survival; most 10 years old believe that they are indestructible. In fact, last night at bedtime, Chris asked Mom only one or two questions about the recent growth of his tumor. Mom explained it to him, and in answer to his question about whether he's going to die, she asked him if he felt any different from he felt the other day before he heard this news. Chris' response: no. Mom told him that he's been through this sort of thing before and that we're going to try another kind of medicine. That satisfied him and he went back to being his usual goofy self. He's quite a kid, and we're very proud of him.

After the clinic visit, the guys then headed back home to meet up with Mom, who was off from work as a result of the approaching hurricane. We focused on getting ready for the hurricane's arrival. Again the house was readied in anticipation of high winds and lots of rain. Chris helped but spent most of the afternoon doing his homework along with some work that his classmates did in school while he was in the hospital. At one time, Chris took a "break" from one homework assignment, during which he worked on another assignment. Some break! But now he's ready to goof off tomorrow with Greg, should the weather cooperate enough for the boys to get together. Our area is currently under a watch for tropical storm scale winds. Today though was the best weather day we've had in weeks (the calm before the storm).

Chris got a call from Grannylin and Granddad (it didn't quite work out yesterday), who welcomed him home from his most recent hospital visit. We also heard that Grandpa's surgery went quite well and that he is now hanging out in the post-op recovery room. Chris was very happy to hear that.

We worked on the house well into the afternoon, so we decided to head out to dinner (who knows how long we might get stuck at home, depending on what happens with Hurricane Frances), as well as to the bookstore that we had promised Chris that we'd visit. He ended up with a Garfield comic book and a new adventure book that looks interesting. If we lose power, now he's got something new to read in order to pass the time.

Medically, Chris had some chest pain around his sternum beginning just before dinner and continuing until bedtime. It seems to Mom to be like chest congestion, based on his recent (and continuing) drippy nose. We reviewed the hospital discharge paperwork to ensure that this newest symptom didn't have anything to do with the biopsy. It seems to be a bit uncomfortable, but it didn't stop him from goofing off with Genie. He's breathing just fine and it didn't prevent him from falling asleep. He had a good day otherwise.

Joke of the day -- What starts with T, ends with T, and is full of T? A teapot!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, September 2, 2004 9:54 PM CDT

Hi Everybuddy!

The guys are back home again. Chris was released from the hospital and went directly to his school, just in time for lunch (how's that for "Do Not Pass GO, Do Not Collect $200?"). While at school, Chris got what he considered to be "good" news: his school will be closed tomorrow so that it can be prepared to receive evacuees from the East Coast of Florida who are fleeing the path of Hurricane Frances.

Chris had a very restful night since all the nursing staff had to do was look at his dressing and check his vital signs periodically. Dad always wakes up for these events (although the nurses admitted last night to having tried to sneak by Dad for years -- it's been a challenge for them since Dad is such a light sleeper). After one such visit last night, Dad started developing an idea about how to present Chris' medical history to the doctors in such a manner to help them identify the best next treatment. He, of course, felt compelled to call Mom, who even though awakened at 2:30 a.m., thought that the idea had merit (yes, he normally waits for a more reasonable time in the morning, but we're in a hurry now). At a reasonable hour in the morning, she began working on the big project. Dad was surprised to find it almost finished (well, the first phase of it, anyway) by the time Dad got home from the hospital. The idea was to have it in the doctors' hands by the time their 1:30 p.m. meeting was to start. As luck would have it, our 25 page matrix made it to the appropriate location of the doctor's meeting just after it ended (just our luck -- the other fax machine ran out of paper)! Dad had explained the matrix in theory to one of the oncologists earlier this morning; she had said that she really wanted to see it and even admitted that it might be helpful. Dad will follow up at tomorrow's clinic visit.

Basically, the matrix acknowledges that Chris has never lost against his fight against neuroblastoma in the past, and has actually been successful throughout these past 5+ years -- except for each time that something disrupts the scheduling of his treatments. Armed with this insight, we are looking at the agents (i.e., chemotherapy drugs, antibodies, etc.) that the doctors have used. We are reviewing how these agents worked to successfully fight Chris' cancer, and hope to use this information to guide our search for a new treatment that we hope will have the same impact but utilizing a different agent. The matrix also allows for the identification of opportunities to attack his cancer's sanctuary areas (historically, the liver) with something like RF, cryogenic, or "regular" surgical techniques, followed by long-term treatment options like a vaccine for the "one-in-a-million" survivor cancer cell (we sometimes call it "mop up").

We have over 5 years of factual information available to us, mainly because Mom has been a pack-rat about saving medical records. We believe that there has to be a way to harness this information and make better use of it than we have in the past. Mom has captured a lot of information in it already, but there is still more work to be done. Although the doctors have all of this information, it is only filed chronologically in his various treatment binders (yes, binders -- that's what you get when you're in the clinic or hospital at least 3 times per week for 5 years). We believe that we can present the information in a condensed, more meaningful manner to help the doctors figure out specifically what has been going on with Chris. They are going to have to figure out the biochemistry and analysis of what's going on inside Chris' body though. Once we get a little feedback (and add as much meaningful information as we can within a reasonably short amount of time), Mom intends to try again to garner information from other neuroblastoma experts in a more specific attempt to get Chris started on a new treatment very soon. We absolutely believe that time is of the essence (having another hurricane bearing down isn't exactly helping the matter either).

As soon as Dad got home from the hospital (after dropping Chris off at school), he began the process of unpacking, cleaning and repacking the "hospital stuff." Some of the things, like clothing, have been repacked in waterproof bags that are part of our hurricane supplies, since it appears that Hurricane Frances' future path is migrating closer and closer to Tampa Bay area after it arrives on Florida's eastern coast. Unfortunately, this is likely to bring this massive storm over some of the same counties that are trying to recover from Hurricane Charley. Needless to say, it is getting confusing at our house as we try to keep track of which emergency contingency boxes are ready for which contingency. Chris is in the process of repacking things in his "games" box and the "arts and crafts" box, both of which are part of the hospital contingency containers. So he's been busy, too as he prunes out the "little kid" activities -- we've had these boxes for a very long time.

Chris surprised some of his classmates by coming to school today at all. But he felt fine most of the day and answered questions about what it's like to be in a hospital. (Of course, he's the perfect guy to calm the fears of other children who might be afraid of hospitals since he truly enjoys himself there.) He had a busy day after school too since he helped Dad fix a teacher's reading/listening machine, then as soon as he got home, he went shopping with Mom to restock on some last minute hurricane supplies. Genie was naturally thrilled to have her playmate back, so Chris kept her occupied. Later, Chris received another how-to lesson from our friend Cate over the computer on instant messaging. He now has a character when he IM's that looks like an elf from one of his video games. He is quite impressed with what he is learning.

Chris also led his parents in singing "Happy Birthday" to Uncle Brian (over his answering machine, luckily for Brian). We would never make it big in the karaoke circuit. He tried to return Grannylin and Granddad's call, but couldn't get through -- perhaps tomorrow. Chris spoke with Grandpa and Aunt Jackie. Grandpa is still in the hospital and is scheduled for surgery tomorrow; Aunt Jackie has been staying with him at the hospital. We all exchanged hospital stories. Chris was quite happy to hear that Grandpa (with help from Aunt Jackie, of course) adopted Chris' idea of having a bowl of Hershey Kisses for the medical staff in the room so they can be a little "happier" about coming in and helping him (or in this case, Grandpa) as a patient. You know, it almost always works. In Chris' case, it also attracts visitors for a hello and a "hug" or a "kiss" (Hershey's, that is).

Since we had been missing meals due to the peculiar schedule of the past couple of days, we went out for a nice dinner. Chris got his dinner in truly amazingly quick time. After he left, Chris was so impressed by the waiter's efficiency that he told Mom and Dad that he wanted to speak with the manager so that the waiter could be awarded a new pin (at this particular restaurant, pins are awarded after customers report good service).

Medically, Chris had a pretty normal day, except for asking for Zofran for nausea on two occasions: just after the long car ride from the hospital to school, then just before bedtime. He also had one bout of diarrhea, and stomach cramping at bedtime again (Benedryl did the trick). He made short work of getting rid of his cold.

Joke of the day -- (thanks Uncle Tom) -- What do you call a cat who's joined the Red Cross? A first-aid kit.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Happy Birthday Uncle Brian! Our thoughts and prayers go out to Grandpa right now, as well as to all of those who are threatened by Hurricane Frances.

Love,

Chris, Alison and Pat

Wednesday, September 1, 2004 8:23 PM CDT

Hi Everybuddy!

It was another bittersweet cancer day. Chris' biopsy went well with only a little bleeding during the procedure, and he needed only one pain killer after the procedure. The doctor was able to get two small tissue samples. Chris' platelets have been boosted up to 146 (the highest they've been in years) due to two platelet transfusions (thanks blood team). The doctor however observed during the pre-procedure CT scan that the one lesion in his liver has grown considerably during the period since his last chemo in June. This was significant enough for the radiologist to modify his procedure plan and call the oncologist to learn if she still wanted the biopsy (if it's growing that fast, it's got to be tumor). She did. Well, at least we know what we are up against for sure.

We still have no clear idea of what his next treatment might be. We do know that it needs to be identified quickly. Our usual oncology team wasn't at the hospital today, but the oncologist on duty, who has been in contact with them, still has no clear idea of what may be in Chris' future. It seems likely that Chris and Dad will have to travel again to a yet-to-be identified institution for a yet-to-be identified treatment. This is not a desirable situation to be in. We spoke with her about our need to identify some immediate, mid-term, and long-term treatment options.

In other news, Chris did some of his homework today with Dad, but then Dad was replaced by his beloved in-hospital teacher. Chris also played some games, watched a video tape, and spent some time on the computer (with a little help from Mom) messaging our friend Cate. Cate taught Chris how to change his messaging personality and wallpaper. He enjoyed that greatly and experimented with several ideas. Thanks Cate!

Medically, Chris had a good day, but for needing one pain killer after the procedure. He's generally been in great spirits, with no pain -- and so far, no sign of internal bleeding (which is why he's spending the night in the hospital), and had a hearty appetite.

Joke of the day -- (from Uncle Tom) -- What did one plate say to the other plate? Food's on me tonight.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, August 31, 2004 9:46 PM CDT

Hi Everybuddy!

Chris is back in the hospital (for a planned reason) and we learned that his fan club is still in place. His room was all setup in about ten minutes in a manner that it has been for over five years at various hospitals. We wheel in a couple of Rubbermaid boxes full of his "stuff" and then everyone does there little piece to turn the room into "his room." He even has his bag of pranks ready. The kid knows how to go to the hospital and still thinks of it as his second home. He's had quite a few nurses come by already.

His day started normal enough with a complete day at school. Both of his teachers have given him homework through Friday just in case as he will definitely miss Wednesday and may miss all or part of Thursday. Chris is eagerly waiting to do his schoolwork "thing" with his hospital teacher of many years.

After school, the guys hung around so Dad could work on some teacher's equipment. Chris stayed in the media center where they were having a teacher's meeting. He'll forego the next one he says.

Once home, Chris had a snack and did his Tuesday homework thus keeping him in his routine. Mom came home early after voting (the new voting machines were very nice) and the two finished packing a bag for Chris. Chris played some games and worked on the computer for a bit as we couldn't report in to the hospital until after 8:00 PM. Chris got in a few dog piles in with Genie and then we headed across the bay to the hospital. After stopping for a brief bite to eat, we arrived only to find that admissions was closed. The ward accepted us (probably because they all wanted to see Chris) and after a little delay, the charge nurse (who has taken care of Chris for years) got everything in order. Chris got quickly settled into his room and then cleaned up. Mom read some of Harry Potter, Book Five for nighttime stuff before making a late night drive across the bay.

The guys are going to have a busy night as they want to be able to give Chris platelets twice (if need be) before his 12:00 PM biopsy. He has to be above 100 in platelets and he hasn't been that high in years. They are also going to recheck his plasma and possibly transfuse that. Chris may be able to sleep through it though.

Chris was called by Grandma and Grandpa tonight to see if he had any last minute jitters. No way! He let them know that he was looking forward to this visit. He also got an e-mail from Grannylin and Granddad so he knows everyone is pulling for him.

Medically, Chris had a good day save for needing a Benedryl for some sinus problem during school. It worked (great stuff for him at least). He did have a little nighttime congestion but hasn't needed a Benedryl yet. He's staying up late waiting to get his mediport accessed. He did have some diarrhea before bedtime.

Joke of the day -- (from Uncle Tom) -- How do you cure a poisoned ant? Find the antidote.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

Monday, August 30, 2004 9:23 PM CDT

Hi Everybuddy!

Chris had a somewhat normal clinic day, and the doctor performed a pre-procedure examination. Her assessment is that his "cold" is improving well enough to allow the biopsy procedure occur. We're still looking for a new treatment option, and are having success in eliminating options that either are unlikely to be helpful or could harm Chris. That, however, is not the kind of success we're looking for. Dad and the oncologist talked about maybe pursuing more aggressive procedures with the possibility of a stem cell rescue derived from placental cord blood stem cells. Chris does have one bag of his own stem cells in reserve, but it is known to be contaminated with neuroblastoma cells. Thus, it is not ideal to have to use that bag. It would be nice to be able to reinvigorate his bone marrow, and at the same time, fight the disease. Hence, the consideration of "rescuing" his bone marrow with stem cells from "cord" blood. Before any option is seriously considered though, we have to find out the extent of measurable disease in his liver, which is the purpose of the upcoming biopsy.

Chris' blood counts were: white blood cells dropped to 2.9 (normal: 4.0 - 12.0), hemoglobin dropped to 12.7 (normal: 11.5 - 14.5), platelets dropped to 37 (normal: 150 - 450), while his ANC dropped to 900 (normal: 1400 - 7400). Again, that's not what we were hoping for. Added to the list of things to do tomorrow evening after Chris gets admitted at the hospital is a new blood test to see whether he might need a dose of plasma along with the platelets in order to help coagulation. His ATP in his pre-procedure test was high, which may be indicative of a need for plasma. It may also have been high due to his recent illness. Thus, a re-test is necessary.

As for the more routine matters, Chris had manned his safety patrol post this morning before heading to the clinic. When Dad dropped Chris back at class after the clinic visit, the students were working on a science lesson. The teacher had just asked a question to which Chris knew the answer, so he raised his hand even before he opened his book bag. Now that's moving into something and not missing a beat! When Dad picked up Chris again after school, the guys spent some more time helping out in the library. Chris was able to read some really neat magazines that they were thinking about throwing away. Dad will carry them off to the clinic before that happens. The guys also made a stop on the way home and Chris wound up with a "going to the hospital game" (thanks Grandma and Grandpa). Ever the optimists, we hope that Chris will be discharged after rounds on Thursday morning so that Chris can make it to school.

Chris called Grandpa tonight. Grandpa will also be going into the hospital for a few days for some tests. Chris gave him some "hospital insights" (like, "Don't eat the food!"). We don't think Grandpa will embrace the "play videogames" idea, but the caution about the food may have merit at some hospitals. We'll check in with Grandpa later about his hospital food options.

Medically, Chris faired better today and the doctor agreed that he has improved. Having said that, he went into a coughing frenzy tonight as he played with Genie in a "dogpile." We're keeping our fingers crossed that the biopsy will be able to take place on time.

Joke of the day -- What do penguins eat for lunch? Ice berg-ers.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, August 29, 2004 8:46 PM CDT

Hi Everybuddy!

Chris had a great day, which was spent with Mom and his good friend Greg. After church, Chris and Mom went over to pick up Greg at his home before heading on to the mall. The first stop was the pizzeria (no surprise there) and then a "walkabout" of the mall (Chris' mini-workout). Mom generally walked a few paces behind the boys, who were side-by-side most of the way. They did a good job of sharing the controls of the three video game displays they passed along with way. After strolling through the mall, the three of them went to see the Yu Gi Oh movie. Chris thought that it was great, while Mom did her best not to take a nap. It did not surprise her that the ten year olds liked the film, which was a longer version of the television show.

Thereafter, Greg was dropped off at his home, while Chris and Mom headed home to link up with Dad and Genie. While at home, Chris went back to messing around on Dad's keyboard. He figured out "by ear" the music from "Close Encounters of the Third Kind."

Medically, Chris still has his cough but it is improving. He still has some congestion, which could be a concern for Wednesday's procedure; the congestion seems to be improving though. Chris had evening stomach cramping and a bout of diarrhea. Other than that, he had a great day.

Joke of the day -- (thanks Uncle Tom) -- Did you hear about the new dog crossbreeds? They crossed a Bloodhound and a Labrador. The new breed is a Blabador, a dog that barks incessantly.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, August 28, 2004 9:46 PM CDT

Hi Everybuddy!

Chris was up with the dawn this morning; Dad had noticed that Chris' light was on when Dad went to walk Genie. Once in from the walk, Dad and Genie snuck up on Chris, who was laying in bed reading. Chris quickly turned off his light so that Genie could "wake him up" properly.

Soon after breakfast, Chris called his friend Greg and learned that he was already out shopping. The two eventually go together around lunchtime. Chris spent much of the afternoon at Greg's home playing video games (he even has a blister on his thumb from battling "bad guys"), watching TV, swimming, and hanging out while Greg tried playing his brand new trombone.

Once home, Chris relaxed for a bit before he and Mom hit the road for dinner and grocery shopping. Dad was busy at a hardware store but he met up with Mom and Chris at dinner. It was funny as Mom was waiting for Chris to "finish" picking around at the remains of his dinner, but unbeknownst to Mom, Chris was reading a Garfield book (on his lap) as he thought he was waiting for Mom.

While at the supermarket, Chris reminded Mom of a lesson that he learned from his PE coach at school, which was essentially as follows: boys start getting smellier the closer they get to puberty, so they need to start using antiperspirant to help deal with that. Chris had interpreted that advice as meaning that he and his peers are all "smelly" right now, so he wanted his own can (not roll-on or any other variety because spraying from a can seemed "cooler"). Mom told him that he could pick out his own antiperspirant, but that he was to find one that was not heavily scented. In typical 10 year old fashion, Chris' attention was attracted to brands that contained words such as "strong," "cool," and "ultra-sporty" on the labels. Mom thought all of those were a bit overpowering for an as-yet non-pubescent 10 year old. She let him choose between two brands labeled "unscented." Resigned to the much narrower selection, Chris chose one. Just as soon as we got home, Chris went straight to the bathroom to take a shower. Just as soon as he was dried, he aimed the can -- and got his elbow. Eventually, he got it aimed in the right direction, and he just about fell over with giggles from the "tickling" sensation. And so went his first experience with antiperspirant. Mom gives an A+ to "Coach;" one can never be too early with such advice.

Medically, Chris still has his cough but it does seem to be improving. It is important that the congestion and cough be gone by Wednesday since Chris is supposed to be sedated for his liver biopsy. They won't do that if he has a cold, which could set the biopsy back yet another week. Other than that, Chris had to deal with diarrhea once today. He was in good spirits all day.

Joke of the day -- (thanks Uncle Tom, and dedicated to our sophisticated neighbor: Hershey D. Cat) -- Why do cats eat fur balls? Because they love a good gag.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, August 27, 2004 9:05 PM CDT

Hi Everybuddy!

Chris had a short clinic visit today since no one knew about any new treatments and the doctor wasn't at the clinic. Chris' blood counts were: white blood cells dropped to 3.5 (normal: 4.0 - 12.0), hemoglobin rose to 13.1 (normal: 11.5 - 14.5), platelets rose slightly to 43 (normal: 150 - 450), while his ANC dropped to 1900 (normal: 1400 - 7400). The declining white blood count and ANC may indicate progress against his "fever bug."

Chris was able to man his safety patrol post this morning before heading to the clinic. Dad ended up checking on the school's Morning Show, which was about to be canceled until he got the thing going. Since some of the crew had left, Dad got roped into operating the computer and Chris blundered into managing the closed circuit TV connection aspect of the show. He liked his role though.

When Dad dropped Chris back at class after the clinic visit, the teacher was handing out a quiz and told Chris, "Do as well as you can (having missed two days of "new stuff.") He did well though. Chris enjoyed finishing the book that is the current subject of his reading class. It's a true archeological mystery story about a ship that was stuck for years in Arctic ice and the crew perished.

After school, Dad had volunteered to get one teacher's audiovisual equipment a looking over. It wasn't working properly. Between Dad and Chris who helped after manning his safety patrol post, her equipment is now working. Chris spent much of the afternoon relaxing as much as he could while being slightly congested and being quiet as Mom was home with a similar illness seemingly.

This evening, one of our doctors called and told Dad about some options in Philadelphia. One is a low dose MIBG treatment, which is risky since Chris does not have any disease-free stem cells in reserve (he does have one bag of stem cells that is known to contain neuroblastoma cells), while the other is a new biological drug, but the clinical trial isn't expected to open up again for several months. We're a bit upset in that one of our local doctors learned of this information yesterday and didn't call then.

Medically, Chris faired better today, although he is still plagued by congestion and has a bit of a cough. He was deemed well enough to go to class. He went to school armed with tissues, a handkerchief, and a bottle of alcohol sanitizer. He didn't require any drugs during school.

Joke of the day -- (thanks Uncle Tom) -- They crossed a Border Collie and a Malamute. The new breed is a Commute, a dog that travels to work.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, August 26, 2004 8:39 PM CDT

Hi Everybuddy!

Chris' fever finally broke sometime this morning. Still though, he continues to have some nasal congestion and associated coughing. He missed his second day of school ever due to being sick (as opposed to low blood counts or scheduling conflicts for treatments). We will check in with the medical staff tomorrow, but anticipate that Chris will attend school tomorrow afterwards.

Chris spent most of the day either playing video games, watching TV, doing some reading for school, or building a Lego kit. He also spent some time on-line developing a new video game. He ate well today, but has had his ups and downs with respect to his energy level. Dad got the feeling that Chris missed the diversity of being in school. Chris admitted as much to Mom at bed -- it's boring to be sick at home (especially since we've had recent electrical storm damage to our television).

Chris did a novel thing to clean out his congestion (at least for a while): he went swimming. He and Dad were in the pool for thirty minutes, where the chlorine and exercise cleared him up. His congestion returned later though.

Medically, things went better for Chris although his itchy throat keeps him coughing. His fever finally broke later in the morning, so Chris and Dad unpacked some of the "optional" hospital bags. The color of his nasal discharge has gone from clear to a yellowish tint, which sounds to Mom like a sign of infection. He didn't have any diarrhea or stomach cramps today.

Joke of the day -- (thanks Uncle Tom) -- Why did the chicken cross the basketball court? He heard the referee calling fowls.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, August 25, 2004 9:06 PM CDT

Hi Everybuddy!

Chris had a very long clinic visit today since they wanted to build their own "fever timeline." Of course Chris didn't have any problems while he was in the clinic (isn't that just like what happens when you take your car in for repairs?). The doctor took a good look at him today and recommended that we take him home and keep him under observation. That's only the second time in five and a half years that Chris wasn't admitted in-patient at the hospital automatically. They took the usual blood samples to culture, a routine blood test, a "full panel" (for liver function) and another vial to determine if he will be eligible for a clinical trial in Texas. Chris was downright cheerful at the clinic. The blood test results suggested that he is fighting some sort of bug. Chris counts were: white blood cells rose to 4.9 (normal: 4.0 - 12.0), hemoglobin rose to 12.9 (normal: 11.5 - 14.5), platelets dropped to 42 (normal: 150 - 450), while his ANC rose to 3400 (normal: 1400 - 7400).

Dad was also told that Chris is slated for a needle biopsy of his liver next Wednesday. Since his platelets have to be above 100, the doctor intends to admit him in-patient next Tuesday night then keep him under observation through next Thursday; poking a needle into his liver (full of blood vessels) causes some concern because of the low platelet levels. Chris was happy to hear that he'll be going to the hospital next week; he truly likes it there and would check himself in frequently if the decision were up to him. The "Blood Czar" is already in action getting platelets lined up for the procedure.

Once out of the clinic, the guys met Mom for lunch at Mel's Hot Dogs on her way to work. Since we thought that we'd be heading to the hospital, Mom went into the office after she worked on getting things ready for a hospitalization. Among several projects, Mom had stopped by Chris' school to pick up his homework assignments for the next few days. As you might imagine, Chris was thrilled -- no, actually he was, at least for his reading assignment.

After lunch, which was enjoyed as a picnic in the camper in Mel's parking lot, the guys headed home, where Chris spent much of the afternoon relaxing as much as he could while being slightly congested. His temperature slowly but steadily declined, but he still has a fever. As is oft the case when Chris is ill, he gets worse as bedtime approaches. Fortunately his fever declined, but his congestion increased to the point of tears (which of course increases the congestion -- sometimes, you just can't win . . .). As one point, he even asked to stop doing his homework. He got another dose of medicine, and he was able to continue on. He's really something. He was sleepy by the time Mom walked out of his room, and his head is propped way up. It worked because he's quietly resting now.

Joke of the day -- (thanks Uncle Tom) -- Why do the elephants have short tails? Because they can't remember long stories.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, August 24, 2004 9:34 PM CDT

Hi Everybuddy!

We'd like to report that Chris had a normal day, but he didn't. Tonight we're on "fever watch." His temperature hasn't hit the magic number (requiring checking in with the doctor to see about a possible 3 day hospital stay to help his weakened immune system fight off whatever the bug may be), but we'll be checking on his temperature periodically throughout the night. His bag is packed. Whatever is going on today (cough, fatigue and up to 100.2 F fever) may have started just before lunch time. That was when Chris went to the school nurse and told her that he was more tired than normal. She called Dad, who asked Chris to describe what the tired feeling was like (e.g., getting ill, need to eat, didn't sleep well, like coming out of "sleepy medicine," etc.). Chris couldn't characterize it, but they decided that Chris should go back to class and then have lunch. That got him through the school day. He didn't have a fever then (98.7 F), but he did have a "tickling throat." Come to think of it, he woke up with a cough that sounded more like mucous at the top of his throat. His throat did not hurt at all today, other than just the irritation of occasional coughing. Last night though, Chris experienced a painful bout of what seemed to be heartburn, which he said burned his throat. Zantac seemed to have taken care of that issue though.

After school pick up went well, but Chris told Dad that he still felt a little tired. They went right home, where Chris had a snack and rested while watching TV. He then went on to do his homework. He then watched TV with Genie for a few hours while waiting for Mom and he'd periodically check in with Dad who was working on some projects in the garage. He had nothing new to report -- well, until Mom got home. She found him on her bed, wrapped up completely in his "Army blanket," almost asleep. He moaned softly, then quietly asked Mom to take his temperature because he might have a fever. As usual, he was right. His temperature (100.2 F) was below the "call the doctor" threshold. Not long after that, we sat down to eat dinner, during the course of which our sick little boy was a veritable chatterbox. He rigorously critiqued the movie, "The Young Van Helsing," that is in fact a bomb. He was so animated that Dad and Mom just looked at each other (like the thermometer was off or something). Unfortunately, after all of the "nighttime stuff," his temperature was still at 100.0 F. He was tired when he went to bed, too.

Medically, we have something going on. Chris said that there were no sick kids at camp this weekend that he knew of, nor in his class this week. We're not sure what this is, but it seems like it's been developing over the last thirty hours, since that's when he first mentioned his itchy throat and an associated cough. We'll see what develops . . ..

Joke of the day -- (thanks Uncle Tom) -- What's big, gray, flies straight up, and enjoys flying so much it will work for peanuts? An elecopter.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, August 23, 2004 9:15 PM CDT

Hi Everybuddy!

Chris had a quick clinic visit today, but he still managed to pull some good pranks on one of his favorite nurses. There was however no new news on possible treatment options though. We are getting very concerned about the amount of time that is passing. The blood test results were weird but promising with platelets slowly edging upward. Chris counts were: white blood cells dropped to 2.7 (normal: 4.0 - 12.0), hemoglobin dropped to 12.1 (normal: 11.5 - 14.5), platelets rose to 44 (normal: 150 - 450), while his ANC dropped to 1100 (normal: 1400 - 7400). The platelets are probably coming back on their own, but we did start Chris on an alternative "medicine" called Bromelain. Unlike all of the other alternative or complementary things that Chris takes (which have at least one clinical trial under its belt), this one doesn't, at least in terms of platelet development. Anecdotally though, it has helped several young cancer patients with rebuilding their suppressed platelet situations. Interestingly (and counter-intuitively for what we are trying to accomplish), it has been used to help with people with blood pressure issues as it inhibits platelet aggregation. Bromelain is derived from the pineapple plant.

Chris manned his safety patrol post this morning before heading over to the Tampa Clinic. Dad was at the library, where the school's "Morning Show" is produced. Something happened to the equipment over the weekend, so what was supposed have been a leisurely wait for Chris performing his patrol duty turned into a troubleshooting period for Dad. The "show" was moved over to the PA system since Dad wasn't able to fix the problem until after he dropped Chris off back at school after returning from the clinic visit later in the morning. Chris did serve as a "sound checker" helping Dad until it was time to go to the clinic though.

After school, Chris manned his safety patrol post again, which is located out in the open by a monument to the astronaut crews that died in the two space shuttle mishaps. It is a pine tree memorial, which doesn't offer much protection from the rain. By the time Dad left his car and walked around into school where he could see Chris, a torrential rain began. Chris was dutifully manning his post, wearing his rain poncho (his book bag though was sitting in a quickly developing pool of water). Dad ran out and got Chris (and the bag) and repositioned him under a covered walkway about twenty feet from his post (the post was still in Chris' line of sight). Just as Dad was telling Chris that if it ever rains like that again (with the accompanying thunder and lightning), he was to move under the nearby covered walkway. Just as he said that, a huge bolt of lightning struck somewhere very close by; the sound accompanied the flash! Any leader would have been proud of a soldier standing his post in such a storm like Chris was.

Chris had actually finished his homework before he even left school, so he had the afternoon to goof off. He had borrowed a book from the library which teaches the reader how to draw super hero comic strips, so Chris alternated between reading it, watching Batman cartoon movies, and using the computer's word processor to draft the storyboard behind a super hero that Chris is in the process of creating. Both guys stop their projects from time-to-time to help each other (Chris helped Dad on some electrical projects).

When Mom got home, she received a big smile from Chris as she brought some popcorn chicken from KFC for dinner. Unfortunately, she had a powerful headache, so there weren't any bull piles tonight. Genie still managed to run around like a crazy dog for a while though.

Joke of the day -- (thanks Uncle Tom) -- Why did the poor dog chase his own tail? He was trying to make both ends meet! -- We would like to thank everyone who contributes to the joke of the day. Chris wanted to do this so we started it a couple of years ago. But even he doesn't know that many jokes. This may surprise some of you, but people write in and comment on the jokes (even more amazing -- they are mostly favorable comments about the jokes). Obviously, Chris was on to something when he wanted to start the "joke of the day." Some of the kids in the clinic check for these jokes so again, to all of the contributors -- thanks!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, August 22, 2004 10:21 PM CDT

Hi Everybuddy!

Mom and Dad picked up Chris at his weekend campground at lunchtime today. He had a good time this weekend, but he prefers the other camp that he usually attends (probably because the former is a little more primitive -- it's not that primitive either but like a typical camp -- than the latter). According to his counselors, he was a "model camper," that he participated in all events, did not eat particularly well at breakfast and lunch but ate well at dinner both nights, and that he generally had a good time. Interestingly though, before we found Chris, we saw a board covering what had obviously been the glass window located closest to where we knew Chris' bunk was located. It turned out that while Chris was outside doing something else, a couple of other boys had been horseplaying inside. Although a counselor was present with those boys, the counselor was just out of reach when one of them fell through the window. Amazingly, that boy walked away with only a couple of minor scratches.

This weekend's activities focused on an Olympic theme, so sports were obviously the highlight. A couple of events were canceled due to rain (such as archery, which Chris likes), but Chris enjoyed the other events. Just like last time, his favorite events were swimming and SCUBA. Unlike last time though, he did not receive any underwater photos from the bottom of the pool. On Friday night, two movies were shown, and not wanting to miss a thing, Chris stayed awake to the very end -- at 2:30 a.m. By the time we picked him up at noon today, the fatigue level was showing.

He perked up after we took him to lunch at the Chuck E. Cheese located only about 1 1/2 miles from the camp: food, drink and game tokens revitalized him for the rest of the day. That was good because we stopped at the supermarket on the way home, which was where we bumped into his friend Greg, who was also accompanying his family as they shopped. Both boys came home with us (a windfall for Mom and Dad, who had an extra helper to put things away).

Greg's dad came by later to take Greg home. That's when Chris remembered that he wanted to "practice" his sales pitch for his school's catalog fundraising event on Greg's dad, who of course was ambushed. It worked; Chris made a sale. Later, Chris made an effort to make the same pitch to one of our neighbors. By then however, the camp-related fatigue was setting in. So, he "introduced" himself to her, handed over the catalog book, then essentially disappeared while Mom and the neighbor talked. Although his style left something to be desired, he was successful there, too. Chris fell asleep immediately upon his head hitting the pillow. Hopefully he'll be bright-eyed and bushy-tailed tomorrow morning.

Joke of the day -- Who won the race between two balls of string? They were tied.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, August 21, 2004 8:30 PM CDT

Hi Everybuddy!

Chris is still off on his third and final camp adventure (a weekend camp) for the summer. So far, no news is good news. The weather even seems to have cooperate over our area today, leaving us without too much precipitation (Chris is about 25 miles from here, so hopefully he enjoyed the same). We'll let you know tomorrow.

We'd like to thank the people thus far who have placed orders in support of Chris' school's fund raiser. Dad learned from a member of the school's Advisory Council that the proceeds from this fund raiser play a significant role in giving the principal greater latitude in developing things like the school's library (Chris' favorite hangout). If you are interested, please feel free to visit www.americanfundraisingsvc.com. There, please click on the "Order Online" button located on the left side of the screen. Afterwards, click on "Shoppers," then enter "Florida" for state and "lake magdalene elementary PTA" for school name. At the bottom of the check out page is a place to enter Chris' registration number (1342316) as the "Seller Sponsor Lucky #." Of course, those who are local can place their sales directly with Chris, who is more than happy to present you with his "polished sales pitch." No matter whether sales are made in person or on-line, they must be placed by August 30, 3004. Delivery is expected before the end of September. Thanks to all who have ordered so far and to those who may order.

Joke of the day -- (thanks Cate) - What happened to the dog that swallowed a firefly? It barked with de-light.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, August 20, 2004 10:09 PM CDT

Hi Everybuddy!

Chris is spending the weekend at a nearby camp. Today he said that he didn't really want to go, but he enjoyed it the last time. We also thought back to his recent experience just before school, when he said that he didn't want to be assigned to his current teacher, whom he loved even on day one. So, we ignored his comment about not wanting to go in hopes that he'll really enjoy himself once he settled in. This weekend's theme is based on the Olympics, so he'll be able to do a lot of sports-related activities, including scuba diving again. Chris asked Mom to take him home, but there comes a point in time when he has to learn to do things as people have done something for him. Chris had been telling Dad that he wants to become a volunteer at the clinic to help the child life therapist. Tonight, Dad told him that he could try it out by helping some of the younger kids at camp. He did, too, by watching the camp's nurse's son for a while as she checked in campers' medicines. We'll pick him up Sunday at lunchtime, when we hope to find that he enjoyed himself.

This day started like any of Chris' other Fridays as of late: go to his patrol post, go to the clinic, and then get back to school. Today the guys tried some new sign-out procedures: Dad had to go to his classroom and sign Chris out, then once back from the clinic, he signed Chris back there. It's different from past procedures, a bit awkward, but it works. The guys went to the clinic for a routine blood test and for some news about future treatment, but the doctor wasn't there to talk about the latter. Chris did get the blood test and his blood test results were: white blood cells rose 3.2 (normal: 4.0 - 12.0), hemoglobin rose to 12.9 (normal: 11.5 - 14.5), platelets rose to 38 (normal: 150 - 450), while his ANC rose to 1400 (normal: 1400 - 7400). We'd like to declare this as an upward trend, but we know better. We didn't learn anything new about treatment possibilities but the guys made an appointment to come back later in the afternoon to speak with the doctor. After school, they did go back, but there was still nothing definitive decided. The doctor did say that both she and her colleague were making calls to Texas and Philadelphia respectively. She also ordered a needle biopsy of Chris' liver lesion and will make the final coordination to get Chris going in the new Texas vaccine study (that's the one that, if we're lucky, could be Chris' back-up option for several months from now; we still are trying to find a primary therapy. Dad briefed her on every conversation that he and Mom have had with al of the other oncologist concerned). We are really interested.

Chris got back to school, just in time again to join his math class. Dad spoke with his teacher about Chris taking the advanced placement math test; the teacher told Dad that he is working on that. When Dad picked Chris up from school, Chris stopped for a "dunch" before heading to the clinic. After the second clinic visit, the guys went to Mom's office to pick her up before heading out to where Chris is camping this weekend. Mom and Dad hung around there until the counselors finished their meeting. We do hope that he has relaxed and is now enjoying himself.

Medically, Chris had a good day.

Joke of the day -- How do you feel if you cross a border collie with a cantaloupe? Melon-collie.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, August 19, 2004 9:26 PM CDT

Hi Everybuddy!

It was a "slow" Thursday for Chris. All he did was what any normal kid would do: go to school, come home and do homework, and then go outside and play. Today Chris and Dad went in a little earlier than usual since it was the first time that the school's "Morning Show" was going to use the new workaround. After safety patrol duty, Chris' job was to get to his classroom and critique how the "Morning Show" appeared on the closed circuit TV. Well, it worked fairly well and now the show's crew can focus more on learning their job. Because Chris has to man his safety patrol post when the cast gets together each morning, he probably won't be able to join them.

School went well for him today. Chris and Dad hung around a bit to work on one of the school's overhead projectors. Chris sometimes helped hold some of the testing equipment. A teacher then asked if Dad could look at a piece of equipment that is used to teach kindergartners how to read. During the time Chris and Dad were in her classroom, Chris took it upon himself to sweep the floor (Dad's not sure why since the school does have a good janitor but his efforts were appreciated nonetheless). The guys headed for home shortly after that.

Once home, Chris jumped right on his homework. We hope that this fervor continues throughout the school year. His penmanship (using cursive writing) has noticeably improved. Dad reviewed his homework before the two headed out to the pool, where they spent one and a half water-logged hours. At one time. Chris was jumping on Dad's back, being his usual annoying self, so Dad tried an experiment in which Chris had to work about getting his next breath (Chris was hanging on Dad's back while Dad was floating on his back). Twice he got a little panicky and "struggled" for his breath. Then Dad could feel him calm down and figure out how to breathe without all of the panic. Dad then stood up and asked if he had just learned something and Chris said, "Yup, I learned that you have to remain calm and not panic in the water and you'll do well." That little session moved his "water sense" up a few bars. He'll make a good scout lifeguard someday.

The guys got out of the water just in time to change and drag a late returning Mom out to dinner and shopping. We went to Pizza Hut but didn't see the usual gang there. Chris said that he was starving (and he did look longingly at every pizza coming out of the kitchen as he waited for our pizza to arrive), but when it was all said and done, he only at two and a half pieces of pizza. We made one quick shopping stop elsewhere before going home. Genie proudly showed Mom her two new rope chew toys. One is for pure fun (dog piles) and one could probably be approved by the America Dentistry people as it has fluoride strands in it to keep the dog's teeth clean.

Medically, Chris had a good day. We still haven't heard a thing about new treatment options and obviously we're getting concerned about that. Chris did see a notice from his blood czar to some members of the blood team as to when to give blood or platelets. We are so grateful that the blood team has remained in Chris' corner for over five years. Although earmarked for Chris, the blood products not used by Chris are always used by young patients at All Children's Hospital. It would be incalculable to determine how many kids the team has helped over all of these years. Thank you!

Joke of the day -- (thanks Uncle Tom) - When is the most likely time that a stray dog will walk into your house? When the door is open.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, August 18, 2004 9:08 PM CDT

Hi Everybuddy!

Chris is getting better focusing on getting breakfast eaten in a timely manner, but somehow he still manages to be a bit late for departure. After patrol duty, the guys headed for the clinic for a routine blood test and in hopes of receiving some news about future treatment. He did get the blood test and his blood test results were: white blood cells dropped to 2.5 (normal: 4.0 - 12.0), hemoglobin dropped to 12.1 (normal: 11.5 - 14.5), platelets rose to 34 (normal: 150 - 450), while his ANC dropped to 1000 (normal: 1400 - 7400). This is another day of poor counts even this far out from any chemo. Dad didn't learn anything new about treatment possibilities, but he discovered that the doctor (one of Chris primary "co-oncologists") had taken Chris' medical chart away from the clinic. That implies that she was off somewhere coordinating with other physicians (we hope). Neither the head nurse nor Chris' other co-doctor had knowledge of any progress. Dad received assurances that they would track us down as soon as they learned something -- nothing as of yet though.

Chris got back to school in time to join his math class. There still isn't any news about him taking a test for advanced placement math. His best friend is in that class, and he and Chris were in the library after school doing homework and goofing off (more the latter than the former). Chris "helped" with his homework and enjoyed their math. Chris and Dad stayed after school a bit since Dad had developed some "workarounds" for the school's messed up computer needed for the "Morning Show." Chris has learned to know and love it will be finally seen on the school's close circuit TV. An uncorrectable problem (at least to a novice like Dad) is that over the closed circuit TV system looks like a DVD being played in wide-screen format. Yup, its all pretty weird. Chris did his "Crocodile Hunter" when the equipment was operational so that they could make a test of the system. This time the "Crocodile Hunter" took on the vicious Manatee (the school's mascot). As the manatee is one of the gentlest mammals in existence, he had to tell some truly tall tales that had some of the students (and teachers) going. We can only hope that the new principal didn't have her TV on then.

Chris and Dad made one stop on the way home: Chris wanted to get the "Spiderman" video game (he liked the "Spiderman 2" game so much), complements of "Aunt" Cathy! Thanks! The guys also blundered into some things on sale for other "house projects." Once home, Chris went to work to finish the little remaining homework that he had so he could play his new "Spiderman" game. He likes it.

Medically, Chris had a good day.

Joke of the day -- Teacher: I hope I didn't see you looking at Fred's test paper. Pupil: I hope you didn't see me either.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby Luke P., Liam, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, August 17, 2004 9:29 PM CDT

Hi Everybuddy!

Chris had a pretty normal day and didn't even have a clinic to visit. His schedule is pretty well "set" by now. He has a safety patrol post to man, which means that he has to be there at 7:30 a.m., clinic visit or not. He seemed to have a lot of fun at school today, and was even enthusiastic about his homework. He had some math to do and had to write a short story. He wrote one that he called, "The Black Dog and the White Cake," about Genie the Wonder Dog persuading Chris to let her out of her kennel so she could "investigate" Dad's birthday cake. In the story, she ends up sliding into the cake while slipping on the tile floor. It was actually pretty well written -- and neat. He was enthusiastic about writing it because he dedicated it to Dad, whose birthday it is today. Of course, Chris has to turn it in for homework, but Dad's due to receive it after it's graded.

Chris and Dad did a little work in the library after school before heading home. While passing by the next-door church's office belonging to the "Candyman," the guys said hello to him. He also let a very thirsty Chris get some water. Chris was trying to determine if we needed to make another candy drop at the church.

Once home, Chris started right into doing his homework. He got the math done quickly (and even neatly and correctly). He then started on writing his story about Genie. Half way through that effort, Aunt Jackie called; after she and Dad talked, Chris said hi and thanked her for the cool shirts that she's sent to him (she has become a "jet-setter" for the Navy). He then got to speak with Cousin Ryan; the two of them discussed some "Spiderman 2" video game strategies.

Mom got home a little late (which is actually "on time" for her), after having to stop by the doctor's on the way home from work. She has a new medicine and learned that her broken nose may not need to be re-set (whew, because that would mean having to re-break it in order to do the job properly). Full healing is still a several weeks/months away, pending on any further discomfort, visible changes (or dog encounters) that she may have.

Chris also was treated to being able to speak with both sets of grandparents tonight, both of whom had called to wish Dad a happy birthday. Dad thinks that they really wanted to speak with their grandson (admittedly a better choice). The calls were a bit late (since we had gone out for dinner) and as a result, Chris didn't have his usual pizzazz when speaking with them.

Medically, Chris had a good day, but for a little cramping again at bedtime. He did not take any medication for it.

Happy Birthday Dad!

Joke of the day -- My dog Genie is really great at math. Really? Ask her how much is two minus two. But two minus two is nothing! That's what she'll answer, nothing!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby Luke P., Liam, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

CaringBridge.org - chrisbecker

Monday, August 16, 2004 9:45 PM CDT

Hi Everybuddy!

Chris had a great time at the clinic today. This visit was relatively long since Dad had a long discussion with the doctor about possible treatment options. After doing all of the "morning stuff," the guys headed to school where Chris manned his safety patrol post before heading over to the Tampa Clinic. Chris' blood test results were: white blood cells dropped to 2.9 (normal: 4.0 - 12.0), hemoglobin dropped to 12.9 (normal: 11.5 - 14.5), platelets dropped to 31 (normal: 150 - 450), while his ANC dropped to 1300 (normal: 1400 - 7400). That's not a real good day for blood counts, especially when the threshold for platelets in so many clinical trials is at least 50. Dad and the doctor had a long discussion about several treatment options; the outcome of which was that the doctor will call doctors in Philadelphia, Texas, New York, as well as review a pile of studies addressing the efficacy of the PET scanner in diagnosing neuroblastoma. If Chris qualifies, he will probably enter an institutional vaccine study in Texas. However, that vaccine takes months to cultivate, and even then there are no guarantees that it will cultivate and if so, whether it will be effective. Chris' real issue is what to do about near-term treatment: what can he receive for treatment that will work against the disease but not weaken his body any further. We're continuing to search for a treatment with a biological cancer fighting mechanism (e.g., immunotherapy) rather than a chemical one (e.g., chemotherapy). Having said that, there are a few low dose chemo treatments still available to Chris, although they are at the bottom of the list of possibilities.

Chris had a great time as he waited for Dad to finish his discussion at the clinic. A volunteer comes from the Pediatric Cancer Center on Mondays. She is fun; Chris and her really go at it. Today was Karaoke Day (every Monday has a theme). One little boy asked who "Carrie Oke" was (kids)! Chris ended up "entertaining" one little boy and one very upset little girl while "singing." She was so distracted by Chris that her grumpiness turned into laughter. The parents thought that it was funny too as Chris had donned a veil and clown wig while singing. Dad missed most of that performance.

Chris had a really good time at school too. He told Dad that he unquestionably got the two best fifth grade teachers at the school. The guys arrived at school after his class made its "morning move" to his reading/penmenship classroom, so he arrived just in time to finish up an excellent story/mystery about a sailing ship that had been found stuck in the polar ice (like forever). The kids were trying to identify just how everyone died. When Dad picked Chris up this afternoon, he was pretty happy. That dimmed a bit when Chris learned that Dad had to stay at the library until he got the equipment working so that the school's "morning show" could go on tomorrow (it had been disabled when the school closed for the hurricane warning). Chris read, did his homework and acted like the Crocodile Hunter when they got the equipment working (thus entertaining some kids at the library and their parents). The computer is still on the blink, but the school can live without it for a bit.

On the way home, the guys stopped by McDonalds for "dunch." He had his usual Chicken McNuggets. Chris pretty much watched TV until Mom got home late this evening. After dinner, we all had a massive dog pile. Somehow, Genie has nearly destroyed her chew rope toy; it now looks more like an octopus. It made for an interesting tug-of-war between Chris, Genie, and Dad.

Medically, Chris had a good day but for a mildly throbbing foot cramp just before bedtime. Dad and the doctor had spoken about Chris' recurring tummy troubles; she seems to think that Chris' quarterly scans would alert us to a serious long-term gastrointestinal problem, which could arise as a result of his surgeries, chemo or radiation treatments, or any combination.

On a lighter note, this year Chris' school has wasted no time in doing its annual catalog sales to support its activities throughout the year. If you are interested, please feel free to visit www.americanfundraisingsvc.com. There, please click on the "Order Online" button located on the left side of the screen. Afterwards, click on "Shoppers," then enter "Florida" for state and "lake magdalene elementary PTA" for school name. At the bottom of the check out page is a place to enter Chris' registration number (1342316) as the "Seller Sponsor Lucky #." Of course, those who are local can place their sales directly with Chris, who is more than happy to present you with his "polished sales pitch." No matter whether sales are made in person or on-line, they must be placed by August 30, 3004. Delivery is expected before the end of September. Thank you in advance.

Joke of the day -- What are a pirate's favorite subjects? Arrrrrrrrrrrrrrrrrrrt and Arrrrrrrrrrrrrrrrrrrithmetic!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby Luke P., Liam, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, August 15, 2004 8:53 PM CDT

Hi Everybuddy!

Today was another somewhat rainy day so Chris didn't get to go swimming or play outside much. As a matter of fact, he wasn't home much either. Despite trying to get together, Chris and Greg couldn't make that happen either. Mom and Chris did get out for church, lunch and a couple of errands. The highlight of the day was going to see the new Disney movie, "The Princess Diary 2." The theater was packed; we were a bit surprised at how many 16 to 19 year old girls came to the movie, which we thought was primarily pitched to preteen girls. They too ooohed and ahhhed at the appropriate times. Everyone in attendance liked the movie. Julie Andrews even sang on screen again. Chris enjoyed it a lot; this "princess" is quite a slapstick comedienne.

We found a good reason for Chris to walk around the mall: he finally showed the lady who manages the games store a picture of Genie. She has been asking to see such a picture for quite a while. She loved the picture, which was of Genie wearing flying goggles (you may recall it from the photo page of Chris' webpage about a year ago).

Medically, Chris had a pretty good day. He had to run to the water fountain at church a couple of times because he felt like there was a pill stuck in the back of his throat. His distress over that made him feel a bit flustered, but he eventually got over it. Other than that, he was fine.

Joke of the day -- What happened to the plant in math class? It grew square roots.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby Luke P., Liam, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, August 14, 2004 9:44 PM CDT

Hi Everybuddy!

Chris had a great day today since we were able to hold the Webelos Scout meeting that looked like it was destined to be canceled by the hurricane. We actually had a worse weather day today than yesterday, with numerous thunderstorms and a tornado warning in the county. The boys understood how lucky we were to even be able to have the meeting when fellow Floridians not fifty miles from here were picking up the pieces of their lives due to the damage caused by the hurricane.

Coincidentally, the major theme for today's meeting was safety and first aid, in preparation for these Webelos being able to earn their Readyman pins. It is a comprehensive mixture of safety and first aid tasks that will take some time to get all the way through. Dad walked them through bicycle, swimming, and automobile safety tasks and then all of the scout worked on developing a family emergency telephone list. They researched phone books and some Internet information in order to build their own telephone list of emergency contact telephone numbers, based on one that Chris developed when he earned the pin last year. It was a very comprehensive hour or so.

Because this was the last special summertime scout activity (scouting normally shuts down for the summer), the Webelos were able to play a lot of video games and other games together, and weather permitting, went swimming. They ate grilled hot dogs for lunch and some stayed for several hours after the meeting. Chris had a great time. Genie would have probably given the day mixed reviews since there were just too many boys with whom to play.

Since we're considering seeing the film, "The Princess Diary 2" tomorrow, we watched original "The Princess Diary" this evening. Chris missed some parts of it due to stomach cramps and mild diarrhea. Otherwise, Chris had another good day.

Joke of the day -- What did the dog get when he graduated from school? A pedigree.

Here is some information sent to us from a friend, whose nephew is now battling cancer: "A neighbor of ours has a son on the Auburn swim team (defending NCAA Champs), and his roommate there is on the US Olympic team in Athens. Our neighbor asked the Olympian (Bryce Hunt) to perhaps sign a shirt for [the nephew] after sharing his story with him. She received the shirt back in the mail yesterday, signed by all of the Olympic swim team members, male and female, and the coaches. There is hardly an empty white space on the front of that shirt! Bryce put a handwritten line: "[The nephew], pull for us in Athens, as we are all pulling for you." All-in-all, cancer is an "individual's battle" but there is often a lot of great support, normally from unexpected sources.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby Luke P., Liam, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, August 13, 2004 9:21 PM CDT

Hi Everybuddy!

Today was an interesting day for Chris, although not too exciting. Hurricane Charley decided to fool all the computer models and turned into the Florida peninsula well south of Tampa Bay, its projected target. Not only did it gain landfall south of us, its course on land basically left the Tampa Bay area in relatively calm conditions. Even as close as twenty miles from here, it been a vastly different story, but for Tampa and our home in particular, the weather was generally fine although occasionally rainy and breezy. Our thoughts and prayers turn to those who faced Charley directly, especially those who evacuated from this area into the storm's actual path and those who were unprepared for it. Some people checked in with us from time to time today, and we also kept in touch with friends who live on the other side of Tampa Bay, where major precautionary evacuations occurred. We jokingly told the Virginia side of the family that they may have to deal with Hurricane Charley soon since it appears that it will return to water at Daytona Beach and head north early tomorrow morning.

Chris woke late this morning, and after breakfast played some games for a while. He took advantage of Mom being home to have her watch, too. Until early afternoon, it still appeared that Charley could come ashore here in the Tampa area. Taking advantage of what we thought was the calm before the storm, we allowed Chris to order pizza for lunch, assuming that it was open for business (it was, and they were doing a very brisk business) since there was a reasonable possibility that we might be able to eat out for a little while. After lunch, we decided to launch our own "hurricane" and spent over three hours working in Chris' room (another phase of "spring cleaning"). Chris was not happy about that; there is something about his room that is so similar to the Twilight Zone: there simply is no end to the straightening up that can be done in there. Tackling one project just seems to lead another.

Medically, Chris had another good day, although he felt a little bit of nausea and cramping at bedtime; no medication was needed. One of the doctors who reviewed some of Chris' reports was concerned about hints contained in Chris' bone marrow report. Chris has received so much chemotherapy for so long that he is at risk for developing secondary effects, at least one of which can eventually become acute leukemia. We have know for some time that this has been a risk. The question has always been should we be more concerned about the immediate problem (neuroblastoma, which we know is deadly) than the longer term risks (anything from secondary leukemia to major organ failures to diseases received through blood transfusions, etc., all of which may or may not occur). We have chosen to be more concerned with the immediate problem. Nonetheless, we must continue to monitor Chris' health closely, including bone marrow health. His quality of life is very important too.

Joke of the day -- How do you make one disappear? Add the letter g and make it gone!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby Luke P., Liam, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, August 13, 2004 7:08 AM CDT

Late entry from Thursday, August 12, 2004.

Hi Everybuddy!

It was another clinic day for Chris, even though he was just at the clinic yesterday. The clinic, like most of Tampa Bay and its school and many of its businesses, will be closed tomorrow. The medical team wanted to get a feel for what's up with Chris blood counts since it will be at least until Monday before the clinic reopens (barring any damage from Hurricane Charley). Chris went to school without knowing whether he'd have to go to the clinic (neither did Dad). Dad found out when he went by the clinic to pick up the final report of Chris' most recent bone marrow exam.

Chris said school was great; later he told the clinic's social worker that his teacher is "awesome!" Not only that, he had State Fair corndogs for lunch. Does life get any better than that?

After Chris' safety patrol shift ended, the guys headed for the Tampa clinic. Dad kept it a secret too see how long it would take before Chris figured it out. It wasn't long. Maybe after two blocks, Chris guessed the destination. Chris' blood test results were: white blood cells rose to 4.1 (normal: 4.0 - 12.0), hemoglobin remained at 13.5 (normal: 11.5 - 14.5), platelets rose to 36 (normal: 150 - 450), while his ANC rose to 1700 (normal: 1400 - 7400). Chris had a real chuckle after he learned that when the social worker got back from vacation, she found her desk littered with the many wrappers from the chocolate Mom brought back from Germany. The social worker is a professed "chocoholic." It seems that the nurse who "suffered" from the dunking machine prank (when she returned from vacation a couple of months ago) got her revenge on one of the staff members who "set her up." The staff had saved her a large sample of all of the chocolate, but they didn't tell her that until after she saw the wrappers and stewed about it for a while. Chris thought that the nurse did a good job with that prank.

After the clinic visit, the guys headed home, where they linked up with Mom. She had just returned from a doctor's visit regarding her broken nose. Although the stitches were removed (she's now sporting a steri-strip to keep the wound from reopening), she'll have to wait a little longer before the doctor can decide as to how to proceed. That's because the swelling still needs to reduce in order to determine what exactly her nose looks like after the break. Fortunately though, there does not appear to be any significant damage that would like interfere with long term breathing or sinus issues. Mom decided that we should head on out for dinner (and save our stash of foodstuffs for the hurricane) since we might not be able to get out for a few days. She chose a normally crowded restaurant; it was nearly deserted tonight though as many people crowded the supermarkets and hardware stores. We were already pretty much stocked up on things, so we didn't have to worry too much about the last minute shopping.

After dinner though, we headed right home. We still had about an hour's worth of last minute hurricane preparations outside our house (battening down the hatches, so to speak). Things are hopefully secured around the house well enough to survive the storm, even if it builds to a category three storm or so. It almost looked like a neighborhood spring cleaning effort since everyone was out and about. We all checked our food and water stocks as well as other hurricane kit material.

Genie accompanied Dad out to the shop building, where she learned the pleasure of running through mud and water today (not related to any weather phenomenon). She was having so much fun that her friend "Hooch" came out to play. Soon both of them were covered in mud. The two even laid down together in a puddle. Despite how "cute" it was, Dad still ended up giving Genie a shower in the pool's shower. She had a great time "outback" though.

This afternoon, we received a very nice and informative telephone call from an oncologist in Texas. She was very easy to talk to and gave us several new ideas. Unfortunately, the hurricane is going to delay getting some information together for her. One thing we did decide to do if Chris has met two prerequisites is to send her some blood for the development of a "Chris specific antibody" (i.e., a vaccine that might be able to be developed specifically for Chris' disease). As it takes at least four months to develop, we are still searching for an interim treatment, possibly in Philadelphia. More on the likely options as more information becomes available.

Medically, Chris had another good day.

We will try to send out an update tomorrow night, but if you don't see one for a day or two, it could be due to hurricane related power failures. Don't worry, we'll catch you up as soon as possible if we do lose power. In the meantime, if any of you are able to attend baseball games, you might want to consider doing so. As you can see from the announcement below, Major League Baseball will be assisting the National Childhood Cancer Society.

Joke of the day -- Teacher: Class, we will have only half a day of school this morning. Class: Hooray Teacher: We will have the other half this afternoon.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby Luke P., Liam, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

www.caringbridge.org/fl/chrisbecker

NATIONAL CHILDHOOD CANCER SOCIETY AND MAJOR LEAGUE BASEBALL ANNOUNCEMENT:

It is our privilege to announce CureSearch National Childhood Cancer Foundation's new relationship with Major League Baseball. Within this relationship, MLB will implement a league-wide, $1 per ticket program that will commence on August 14th and continue through September 9th. All Major League teams will participate in the program. All proceeds from the program, which MLB estimates will be approximately $1 million, will benefit CureSearch National Childhood Cancer Foundation and the Boys and Girls Clubs of America, which is the official charity of Major League Baseball.

The MLB program is called The Commissioner's Initiative for Kids. It is designed to encourage children and families to help other children. This summer's program will be presented as Major League Baseball sending kids to the ballpark in support of childhood cancer research.

The program is also being designed to be an annual event and will attempt to build on the equity established by smaller MLB's Mother's Day (breast cancer) and Father's Day (prostate cancer) caused-related marketing programs. The promotion will include Major League Baseball, CureSearch and Boys and Girls Clubs logos. It will also feature a gold Major League Baseball logo emblazoned upon a gold ribbon. The promotion will be sustained nationally through broadcasting, licensing, advertising, public relations and community relations efforts at the league level, with local integration by individual teams. Attached please find an MLB Press Release from the Office of the Commissioner of Baseball. In addition, please find attached a graphic rendering of in-stadium jumbo screen advertising.

Fans will be able to obtain tickets to games in each Major League Baseball market by making a minimum charitable contribution of $1 per ticket. Tickets will be distributed through designated Boys and Girls Clubs of America locations. In addition, we anticipate that retail tie-in partners with MLB will also serve to distribute tickets. Major League Baseball will coordinate all group ticket distributions for more than 20 tickets. For information about where to obtain tickets, fans will be directed to log-on to each club's official website, as well as MLB.com, the official website of Major League Baseball. A complete market-by-market listing of game dates, for which tickets will be available, is also on the website. The number of tickets available by club will vary based upon each club's season ticket base and the number of individual game tickets already sold. Ticket availability will be on a first-come, first-serve basis.

Wednesday, August 11, 2004 9:14 PM CDT

Hi Everybuddy!

It was another busy morning for Chris. He still hasn't gotten the hang of waking up, eating, getting cleaned up, dressed, and out the door to get to his patrol post on time without a lot of encouragement. Despite the hustle and bustle, Chris did make it to his post on time. After his shift ended, Chris and Dad headed for the Tampa clinic. Chris' blood test results were: white blood cells rose to 3.5 (normal: 4.0 - 12.0), hemoglobin rose to 13.5 (normal: 11.5 - 14.5), platelets dropped one to 33 (normal: 150 - 450), while his ANC rose to 1500 (normal: 1400 - 7400). Chris was permitted to attend school. The local doctors are talking with others, a new treatment plan has not yet been formulated. We have been fortunate enough to hear from doctors in Missouri, Texas, California, Pennsylvania, and New York. We hope to hear from someone in Michigan, too. We now have a list of options and are beginning to get an idea of which may be Chris' best bets. We'll learn more in the next few days. We're hoping that most of the treatment can occur here in Tampa, no matter which treatment he starts. We shall see.

School was fun today for Chris, who got caught up in one of Dad's projects after school. He got some of his homework done then. Before leaving school, the guys ran into one of Chris' former teachers who encouraged us to pursue getting Chris enrolled into advanced placement math. Dad will look into that tomorrow. Chris asked to stop at McDonalds for "dunch," which they did. He did a really good job on his homework this afternoon and managed to get Greg to come over to visit for a few hours.

Greg and Chris spent most of their time in the pool playing two on one ball tag with Dad. They thought that it would be easy but were a bit surprised at how Dad managed to elude them (and the balls). They then played each other in Squidditch 2, which was also fun. Everyone was having so much fun that Greg's Dad actually had to come around to the back of our house to get Greg out of the pool. Oops! The guys also made some plans in case the looming hurricanes interfere with this weekend's scout meeting.

After Mom got home from work, she and Dad went through the list of emergency items in case the back-to-back hurricanes (Bonnie and Charley) descend upon our part of Florida. We decided that not much more was needed, so instead of going shopping, Dad prepared a German style dinner. Chris is really getting into bratwurst, although he didn't much care for the spaetzle.

Medically, Chris had another good day and had no complaints but for a mosquito bite on his leg. At bedtime though, Chris expressed some generalized nervousness about what kind of new treatment he may have to try. For example, he said that he did not want to have to go to Texas if there was nothing but tumbleweeds rolling around. Although he tried to be funny about it, Mom thinks he's older now and understands that we're at an important crossroad. He wants to know "the serious stuff," but at the same time is afraid of it. Chris has told Mom several times over the past year that he definitely is not ready to die, but he did not directly mention that topic tonight.

Joke of the day -- I don't have my homework this morning because I lost it fighting this kid who said you weren't the best teacher in the school.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby Luke P., Liam, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, August 10, 2004 9:01 PM CDT

Hi Everybuddy!

It was a quiet day for Chris although he did get one surprise: when his class walked into the library for studies (their classroom air conditioner was out), he stumbled into Dad. Dad was actually there working on getting one of the school's computers working and Chris (and Dad) were quite surprised. Dad thought that Chris' new teacher was a good teacher, too.

Chris is not really into early morning wake up calls (he takes after Mom, who really doesn't appreciate them either, but of course has more experience dealing with them), but he is getting better at them. Genie is a big help and will resort to laying on him if he doesn't make enough movement after Dad starts talking to him in the morning. Chris likes that although he can't sleep that way.

Chris was surprised to see Dad at the school working on the computer used for the school's morning show. Unfortunately, it appeared to Dad that that computer is in bad shape as even some of the things Dad researched about the problem haven't fixed it yet. Chris got tied into the problem since some of the information became available just as school ended. As a result, Chris ended up sitting in the library doing his homework (which worked out nicely). Once the guys got home, Chris finished the one homework problem he had left and then tried out his own computer, which Dad finally got working. He then migrated to playing with Genie and playing a video game until Mom got home.

When Mom arrived, Chris talked everyone going out for some really good macaroni and cheese, so we did. They must remember him well there; when he sat down, the server said that she'd get some macaroni and cheese going without even asking. Chris and Mom played another game of "War" using some Marvel comic trading cards, based on the attack and defense points indicated on each card. After dinner, we stopped off at a bookstore where Chris used the remainder of his allowance to buy yet another Spiderman book.

Dad received a telephone call from Chris' new homebound teacher, who would help him if Chris should ever have to stay at home during treatment. She was his assigned homebound teacher last year, too, but the two never had to meet. Coincidentally, her husband was Chris' teacher for one semester during the previous year, and Chris really liked him. He'll like her, too.

Medically, Chris ended another day with some stomach cramping this evening. Tonight he required both Benedryl, and later, Zofran for nausea. Yesterday evening, Mom and Dad emailed to some of the notable neuroblastoma researchers from around the country. Responses have slowly been coming in, but it has yielded some options. Of course there is no good way to measure the effectiveness of one study versus another, but we've been able to eliminate some options that are less likely to be of benefit by talking directly with the experts on a few studies. Generally, eliminating options isn't what we like to do, but on the other hand we don't want Chris to pursue a course of action with a high probability of failure either. Another issue is that we really don't know what is going on in Chris' liver. It really makes a big difference whether Chris has "only" one or two tiny tumors, or whether the "diffuse" pattern that has shown up in some of his scans over the past year is really neuroblastoma or is some sort of shadow or "ghost." We do not yet have an answer to that key question. We're working toward a treatment solution as fast as we can.

Once again we are confronted with the realization that, no matter how understanding and compassionate the physicians may be, they aren't as helpful in selecting the most beneficial course of action for Chris, primarily because there are problems in getting normalized data to make comprehensive comparisons. In other words, it is difficult to compare apples to oranges because there really isn't a good comparison chart between them. Critical decisions when facing crossroads such as we are facing now, must be made by the parents.

Joke of the day -- Teacher: How much is half of 8? Pupil: Up and down or across? Teacher: What do you mean? Pupil: Well, up and down makes a 3 or across the middle leaves a 0.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, August 9, 2004 8:59 PM CDT

Hi Everybuddy!

Chris had a nice day at school, and he's finally met all of his teachers. Today he met his art, music and physical education teachers. He is still having a little bit of trouble getting out of the house quickly enough to get to his patrol post by 7:30 a.m., but that's part of getting used to the brand new school year. Soon after his shift was over, Chris and Dad headed for the Tampa clinic. Chris' unpredictable blood test results continue being just that: unpredictable. His blood test results were: white blood cells dropped to 2.7 (normal: 4.0 - 12.0), hemoglobin dropped to 12.6 (normal: 11.5 - 14.5), platelets remained at 34 (normal: 150 - 450), while his ANC dropped to 1200 (normal: 1400 - 7400). Chris was permitted to attend school. Dad learned that although Chris' local doctor had spoken with one of the New York doctors, they still hadn't come up with a new treatment plan. Later we received a call from one of the NY doctors; although he didn't have any definitive plans for Chris, he did have some suggested options. Chris is welcome in NY for additional testing, at our earliest convenience. He also recommended that we speak with neuroblastoma experts from other oncology programs across the country. Based on this recommendation, we have sent out requests for assistance regarding Chris' situation to several other institutions. Dad will contact our oncologist here again tomorrow.

A major issue that must be resolved is what exactly is going on in Chris' liver: is there some sort of radiological "ghost" showing up in Chris' liver or is it actually neuroblastoma? Chris' medical testing to date provides some information, but does not definitively answer that question. More information is possible, but we'll need to work with the insurance company in order to see about authorization.

Dad dropped off Chris at school and learned that Chris' new teacher must be keeping an eye out for Chris: he had checked on him earlier when Chris was manning his patrol post. Chris enjoyed school today and said that it should be the last "rule day," now that he's met all of his teachers. Before they got back to school after the clinic, Chris came up with the solution to the three variable problem Dad gave him yesterday.

Greg had called before Chris got home from school, so he and Dad made a tentative plan for Greg and Chris to get together. Greg knew that he'd have to wait until after Chris finished his homework. When Chris got home, he started right into his homework. Dad helped him think through one problem and then Mom checked his last problem (she had arrived home a little early due to a doctor's visit). Greg was cleared to come over. Unfortunately, when Dad went to check the second problem, it was wrong (Mom hadn't been shown the full homework question). It was a little awkward but Greg sat down and waited until Chris got his homework up to standard. The two boys then played a little video game and then went swimming. After swimming, they played more video games until Greg's dad came to pick him up.

Mom got home from work a little early this afternoon, but she came via the doctor's office. She'll be seeing a specialist on Thursday. Chris didn't particularly care for the looks of her nose, especially when she took off the dressing that had been covering her sutures, but it is a necessary part of the recovery process. She mentioned that several of her lawyer colleagues jokingly offered to draft a restraining order to keep Genie away from Mom -- no way!

Chris spoke by phone with people other than Greg today. He entertained Grandma and Grandpa for a bit until they finally got to speak with Mom. They were checking in on her after yesterday's close encounter of a dog kind. Right on the heels of that phone call was a call from our neighbor, who was also checking in on Mom. Needless to say, Chris got some phone action with her, too.

Dad grilled out tonight and also served two of Chris' favorites: white rice and corn. Chris finally decided that he liked steak. We told him that someday soon he'd probably like salad. He didn't buy that one, though.

Medically, Chris had another good day but has developed a rash in is groin area without any apparent cause. It will soon be a topic of discussion with the doctor.

Joke of the day -- (Mom) What did you learn in school today? (Son) Not enough, I have to go back tomorrow.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby Luke P., Liam, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, August 8, 2004 9:05 PM CDT

Hi Everybuddy!

Chris had another long clinic day today, but this time he got to sit in the waiting room -- waiting for Mom. Genie the Wonder Dog broke Mom's nose. Ok, it was an accident but Mom's nose is broken nonetheless. Chris had just finished showing off his cardboard briefcase loaded down with hundreds of pennies that he wanted to donate at church this morning. Mom was finishing up getting ready to go to church, and bent over to put on her second shoe. Just as she did so, Genie apparently decided that it was time to play. At that very moment, Genie jumped up on the bed, but miscalculated her leap. She crashed headlong into Mom's nose, which got whacked pretty hard in the midair collision. Mom was in enough immediate pain that she did not realize that she was bleeding all over the bedroom carpet (Dad got stuck with that cleanup duty). Surprisingly, Chris "I can't stand the site of blood" was calm and cool about it all, and he gathered up Genie (who no doubt had quite a headache too, but wasn't able to express it). In fact, things were so quiet that Dad wouldn't have gone into the room if he hadn't heard Mom yelp.

After the bleeding was under control, we headed for the nearby urgent care clinic (we're distrustful of one of the local hospital emergency room, after Dad's recent seven hour wait without service, and besides, by then things were under control). There she was X-rayed and stitched up (she needed two stitches on the bridge of her nose, where apparently one of Genie's teeth made contact) in under two hours. As for the nose, there is nothing that can be done until the swelling goes down in a few days. In the meantime, she'll just have to follow up with an ears/nose/throat doctor. We decided that it was ok for Chris to wait in the waiting room since, aside from one other patient with some sort of ankle injury, the others were waiting for back-to-school physicals. Chris did a good job of waiting (he has a technique), and even helped Mom bide her time as she waited to get called into the examination room by playing a card game of "War," but using Marvel comics trading cards rather than playing cards. He also helped her know when to wipe her nose (the little gash on her nose was still oozing a little blood, but she had some difficulty feeling it due to the swelling). Chris thought that Mom was pretty brave about it all, and helped her out throughout the day.

After the clinic, we stopped by our regular pharmacy to get a prescription filled for Mom. We found that our favorite pharmacist was on duty. He took good care of Mom, and Chris gave him the "kid movie report" (he has a daughter about Chris' age so Chris tells him about movies that he thinks that she might like). We then went out to lunch (Mom was feeling better, but wanted to do the running around so that she could just get home and rest) and then went on to do the weekly shopping. Once home, we vegged out and watched a couple of movies.

Tonight Chris got a special call from Uncle Brian, who is no longer a cavalryman but now a teacher in New York City. Uncle Brian has hung up his spurs and is now "Doctor Brian" again. The kids on Staten Island will get a big kick out of him as they get to know him. He and Chris spoke about things going on and going back to school (Uncle Brian's school doesn't start for a couple more weeks). Chris has already realized that we'll now have someone else to visit if we have to go back to New York for medical treatments.

One of the funny things today (despite the nose incident, we thought that Chris' briefcase full of pennies was funny too, but it got lost in the shuffle of ensuing events). Chris wanted a piece of leftover pizza for breakfast along with his usual breakfast sausage. He liked them both. Dad mentioned that Chris could in fact order a sausage pizza next time, but Chris acted like that idea was totally gross. Go figure! Dad also kept giving him "math quizzes" (as Chris calls them). He gave Chris a few with three variables, all of which Chris solved. Finally Dad stumped him. The last one was a little different. Until that one, Chris has been solving these things by substituting numbers in place of the variables. That's difficult and not necessarily a good technique, but he's correctly answered the previous questions in less time than it would take to solve them algebraically. He and Dad might work on a better way to solve them tomorrow. For some reason, Chris likes his "math quizzes."

Medically, Mom hogged the problems today. Chris actually had a good day.

Joke of the day -- Teacher, I can't solve this problem. Any five year old should be able to solve this one. No wonder I can't do it then, I'm nearly ten.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby Luke P., and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, August 7, 2004 10:06 PM CDT

Hi Everybuddy!

Today was a Mom and Son kind of day. Dad spent his day helping a friend move, and Greg was across the peninsula visiting the Kennedy Space Center. This was great though since Mom has been away for so much time recently. Most of the day was spent indoors since it was another day of rain (not a good sent off for Aunt Pat, Uncle Dave and Nicholas and Nathan). Days like today come with the territory; this is the wet season, which allows Florida to have such lush vegetation. Dad and Genie were able to get Chris off to a good start this morning with a fun wake up and then a hearty breakfast. Genie gave Chris some ear nibbles that he thought were funny and ticklish.

The morning was slow though since Mom had insurance work to catch up on (she's been gone the better part of the past 6 weeks, so the paperwork was really stacking up). Chris passed that time playing the Spiderman 2 video game and watching kid cartoons on the Internet right next to Mom, who was working on another computer. By the end of the morning, Mom had quite a number of insurance-related letters and packages ready to go. Mom and Chris visited the post office, where Chris had his first bit of fun on the new computerized postage scale. He weighed each package and letter, applied postage, "paid" for them and dropped them all in the drop box -- he got a kick out of the loud thud them made as they landed inside the drop box.

After stopping at the comic book store, Mom and Chris also decided to have a hearty lunch from Chris' favorite pizza joint: Papa John's. Dad doesn't eat the stuff so they normally get it when Dad's not home. Chris wanted to walk around the mall, so they went there next. While there, they discovered that the new movie, "A Cinderella Story" would be starting soon. So they bought tickets, walked around the mall until it was time to start, then settled in for the movie. Both thought that it was a nice (but ordinary) movie. Dad, who had just finished his project, was trying to get there to link up with them, but he was delayed in a huge traffic jam caused by a large accident. Mom got Chris to do the usual "tour" of the mall. They also made it to the game store that Chris likes, but he visited there again without a picture of Genie (the owner has always wanted to see a picture of her), Chris and she talk quite a bit.

Once home, Chris settled down to watch another "Ace Ventura, Pet Detective" movie. They're sort of weird but apparently appealing to the ten year old set. He didn't eat much for dinner but then he had a hearty lunch. Just as he was finishing dinner, he had the opportunity to speak with Grannylin,

Medically, Chris had a good day except when he stood up at the end of the movie: he felt some strong stomach cramps that nearly had him doubled over. He hugged the wall as he walked slowly to the theater's exit, and he did better after he got away from the smell of popcorn, which did not sit well with him this afternoon. He didn't eat anything at the movie, so Mom's not sure what set that off. Later this evening, he had the usual bedtime cramps. Mom put her hand on his belly and could feel it tighten up during the cramping. He didn't take any medication for the bedtime cramps tonight.

Joke of the day -- (complements of Uncle Tom) -- What does a cat like to eat on a hot day? A mice cream cone.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby Luke P., and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, August 6, 2004 9:40 PM CDT

Hi Everybuddy!

Chris did a good job making blood cells these last few days. All of his counts improved, even platelets. That isn't to say that his marrow is in good enough shape to continue with chemotherapy, but at least some of those cells are maturing into real live blood cells again. The only thing predictable about Chris is that he is unpredictable. Chris' clinic visit went quickly and well. Chris' blood test results were: white blood cells rose to 3.5 (normal: 4.0 - 12.0), hemoglobin rose to 12.9 (normal: 11.5 - 14.5), platelets rose to 34 (normal: 150 - 450), while his ANC rose to 1900 (normal: 1400 - 7400). All of these increases were purely Chris. Despite these increases though, Chris' chest and shoulder have more petechiae fields than usual. In fact, Mom was very surprised to hear that the platelet number rose considering the way Chris looks. The key to remember though is that although 34 is a better number than what Chris had the other day, it is still very low (the bottom of the normal range is 150).

Chris' clinic days are like this now: he goes to school to stand his safety patrol post, then the guys head for the Tampa clinic and normally play Uno for a bit (the clinic doesn't open for business until 8:30 a. m). If things are good, he can get through the process in about twenty minutes. If he has to wait for the doctor, it takes however long it takes. The guys then head back to school, where Chris returns to his classroom and usually Dad turns in Chris' tardy card. We're working out the routine with his new teacher.

Chris' class is being "team taught" this year. He has his homeroom teacher, who is responsible for teaching them math, science and social studies. He also has a female teacher who is responsible for teaching reading, writing, penmanship and grammar/vocabulary. Dad worked with her last year during the student volunteer pilot program test; she is good so Chris is very lucky. He thinks so too. The "team teachers" play to their strengths and the kids get a feel for what middle school will be like with having different teachers.

Speaking of math, Chris bugged Dad for a "math question" (he can earn bonus allowance money for difficult questions, normally algebraic questions). Dad decided to give him one with two variables: 2x + y = 15 and x + y = 10. Chris has never encountered this before. Well, after about one minute and without using any paper, Chris came up with the correct answer. Coming back from school he wanted another one, so Dad gave him 2x + y = 18 and x + y = 11. This one tool a minute longer, but he also got his one correct. It is uncanny that he can do this since he has never been formally introduced to Algebra (although a long time ago, he and Dad played verbal math games). Unfortunately, he cannot tell Dad how he figures it all out, but it certainly seems to come easy to him. Chris just seems to be mathematically inclined.

Chris spent most of the afternoon watching TV and occasionally helping Dad. Dad was replacing a thermostat and gasket on a car and Chris was his capable observer. Despite not having done anything like that in ages, Dad got it fixed; Chris was pleased to report that there wasn't a leak anywhere to be seen. Chris was able to get some playtime in with Genie the Wonderdog of course.

Mom got home from work late, so we decided to grill something "quick." Chris was very hungry and asked for a favorite: macaroni and cheese. He must have really been hungry; his teacher mentioned to Dad that Chris wasn't even going to get lunch initially. His teacher talked him into getting some, but then the teacher reported that Chris didn't eat anything that he had picked out. We appreciate the feedback. Chris' weight is good at the moment but can make radical changes. At today's weigh-in, Chris was almost a kilogram less than the last weigh-in. That sort of attention by the faculty and staff have helped Chris do so well.

We changed the pictures on Chris' webpage again. Now there are some pictures of the visit of his aunt, uncle, and cousins.

Medically, Chris had a good day and no problems but for the petechiae and the usual bit of stomach cramping near bedtime.

Joke of the day -- (complements of Uncle Tom) -- Why did the rabbit go to the hospital? To have an hop-eration.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby Luke P., and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, August 5, 2004 8:39 PM CDT

Hi Everybuddy!

Today was Chris' first day of 5th grade. By the end of the day, he was already thinking that his new teacher might just be all right after all. Chris called today "rule day." It seemed that in virtually every class (other than math), teachers were reviewing "the rules." During math though, they got right down to business with "Graphs 101." It appears that there will be a lot of geometry in store for Chris this year based on what he's seen so far. Chris settled right into his new homeroom and was very pleased to learn that his best friend from last year's classroom sits right next to him now. They are also on the same peer mediator team again. Two of his other former classmates from last year are in his class, too. Chris' class size is 21 students, which is a bit smaller than before.

Chris' day began just a bit differently; Genie was "Bone Girl" as she brought in one of her chew bones to drop on him instead of her usual rope toy. It worked just as well. It did get uncomfortable for Dad though when he sat on the bed to speak with Chris and found the bone though. He'll talk her into taking the rope in for wake up duty tomorrow morning.

Chris has to go into school earlier in the morning than last year since this year he is a safety patrol member. He must be at his post at about 7:30 a.m. He made it there on time this morning, but it was an effort. His post is next to the school's monument to the Challenger and Columbia astronauts: seven pine trees. Chris told Dad that after school, before Dad arrived, a new kindergarten teacher had left Chris to watch her line of students while she dropped some off in a nearby classroom (there are also lots of teachers positioned in the area). He kept them "busy" by asking how they liked school, what they did today, complementing how well they were staying in line and all. It was pretty cool and he liked the experience.

After school, he and Dad headed for home in order to pick up Mom (who worked from home on medical research issues) and finish the back-to-school shopping. That task completed, we headed home and mostly played with Genie. Later, we watched the movie, "Hidalgo." Dad had seen it before but neither Mom nor Chris had. We all liked the movie -- especially the horse. During the movie, a bee managed to get into the house. Genie was ever vigilant in keeping an eye out for it, while Chris pretty much peeked out from under an Afghan. He doesn''t care for bees. Dad finally took care of the problem so Chris could rest easy tonight.

Medically, Chris had an interesting start to the day: he complained to Dad of pain in his feet. Dad gave him a Tylenol which seemed to help things along. The school nurse later called and said that Chris was with her with the same complaint. Chris described the pain to Mom on the telephone. It sounded as if his ankles needed to "pop" or "crack" (he does that from time to time, it's true), but they wouldn't do it. Mom told him to try to ignore it and see if his ankles would just relax. He went back to his classroom and did not complain about it again until bedtime. The school nurse did not have any medication for Chris anyway; it's the first day of school and Dad did not have a chance to deliver the "as needed" medicine bag to her yet. We maintain medicines at the school so that the school nurse can administer them when necessary. However, there were some administrative details to finish before Dad could drop the bag off before lunch. He had the same pain at bedtime tonight; it's noticeable when he tries to move his ankles in any direction other than as if her were going to walk forward. He also had a little "side stitch" pain on his right side at bedtime (like someone might get after running for a bit). His breathing appeared normal. We'll speak with the doctor tomorrow. Pain complaints send chills up the spine of "neuroblastoma parents" but we know that Chris' bone scan last month appeared to be normal. Yet, one can never be sure -- this disease is well known for quick progression. Other than that though, Chris had a good day.

Joke of the day -- (complements of Uncle Tom) -- Why don't cats play poker in the jungle? Too many cheetahs.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, August 4, 2004 8:36 PM CDT

Hi Everybuddy!

Unfortunately, today is Chris' last day of summer vacation; school starts early tomorrow as now he has a safety patrol post to stand. To add insult to injury, he didn't even get to sleep in late today since he had a clinic visit. The clinic visit went well and Chris' blood test results were: white blood cells rose to 2.4 (normal: 4.0 - 12.0), hemoglobin dropped to 11.7 (normal: 11.5 - 14.5), platelets dropped to 26 (normal: 150 - 450), while his ANC rose to 1000 (normal: 1400 - 7400). We received the initial test results from his bone marrow biopsies/aspirants done last week. They're not too good, however the bone marrow continues to appear to be free of cancer. It appears that the marrow is making cells that could develop into platelets, but somewhere in the maturation process, they're not meeting up to expectations. The doctor is still trying to consult with one of the New York doctor. Dad said that we were amenable to seeking treatment options anywhere. There are a few treatment options of which we know that could work, but those clinical trials are difficult to get into and include some "phase one" trials (in which the doctors try to determine the correct dosages for new possible drugs or other therapies). Chris did not require platelets today but they're expecting such a transfusion on Friday. Accutane is temporarily on hold until the doctor finds some decent treatment options and ensures that the Accutane would not interfere with such options. For example, we would not want to have Chris precluded from participating in a clinical trial simply because he had a few days of Accutane. Nonetheless, time is definitely of the essence; we cannot risk waiting much longer before taking some sort of "punch" at the disease.

After leaving the clinic, Chris called Greg, only to learn that he wasn't home. The guys decided to head home anyway. Chris played a variety of games and played on the drums until Greg called and told Chris that he could come over after lunch. He was true to his word. The two boys did the usual mix of things: video games, swimming, harass the dog, ride bikes, play video games, etc. Greg even stayed for dinner tonight. It was almost a perfect visit until Chris figured out how to finally lay into a ball with his foot -- in the house. The consequence: the demise of one glass lamp shade. Actually, we've been pretty lucky over all the years that Chris has been somewhat "housebound" in that we've played all sort of ball games in the house and this is the first real damage in all of those years.

When Mom got home late this evening, she and Chris took Greg home. During that drive, Chris broke the news to her about the broken lampshade. After her dinner, Chris showed her some new video game moves, then the two did the usual "nighttime stuff." Chris is very nervous about starting school tomorrow -- to the point that he cried out his trepidations. Among other things, he's worried that his new teacher (a man) might be so serious that he won't ever smile. Mom suspects that Chris will be in better mood after he gets over the back-to-school-blues tomorrow.

Medically, Chris had another good day save for his slightly blushed fingertips. The cause is still a mystery but they don't bother him much at all. Sometimes when they appear very red, he says things fell "warm" to the touch.

Joke of the day -- (complements of Uncle Tom) -- Did you hear about the cat who drank 5 bowls of water? He set a new lap record.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby Luke P., and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, August 3, 2004 9:06 PM CDT

Hi Everybuddy!

Chris really slept in this morning, his last opportunity for a while since he is due to begin school on Thursday and had a clinic visit tomorrow. Because he stayed up late with his cousins last night, Dad expected that he would sleep late. Genie was eager to awaken him but Dad held her off. Once up, Chris had a quick breakfast, then got a phone call from his friend Greg. The plan was for Chris to go with Greg, his mom and brother to Tampa's Ybor City in order to visit a game arcade once something was fixed at their house. Chris expected to get a call back from Greg at around 1:00 p.m., but instead got the call around noon. Chris was off!

Chris said that the game arcade was really cool and had a lot of virtual reality games. The most notable were a Star Wars pod racing game and a race car simulation. He reported that Greg won both types of races. Chris called while they were leaving the place and talked Dad into letting him go back to Greg's home until it was time to go to school (tonight was "open house/meet the teachers night"). Dad picked him up, then they left for Chris' school in order to link up with Mom, who was coming in from work.

Chris has been assigned to a male teacher this year, who is new to this school but not new to teaching. In light of his new teacher's Hispanic background, Chris may try to see if he might teach him some Spanish (something that he's always wanted to try to learn). He seems like a nice guy. We learned that as soon as the kids get back to school, they'll be changing classrooms, so things will be a bit hectic for a little while. We went around to several other areas like the art and music department (Chris loved the xylophone there), and Mom and Dad joined the PTA and the Dad's Club. Chris saw some of his old classmates; he has two of his former classmates in his new classroom this year. He also stopped by to see his old teacher, who was glad to see him.

After the school visit, Chris conned Mom and Dad into going to his favorite Mexican restaurant. He showed Mom some of the things that he learned in his animation summer camp as drew a few pictures describing how cartoonists use stick figures to start a story, then build on the stick figures until they become fully developed characters. We also played "Hangman." Since it was Chris' last night of summer vacation, Mom let him stay up a little late (but not by too much as Dad's been trying to get him back on his school schedule -- well, except for when his cousins were here).

Medically, Chris had a great day with no problems, at least until the usual minor stomach cramping near bedtime.

Oh, by the way, we added some pictures of last weekend's scouting adventure to his website.

Joke of the day -- What do you call a man who rescues drowning spooks from the sea? A ghost guard.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby. Luke P., Liam, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, August 2, 2004 10:49 PM CDT

Hi Everybuddy!

Chris had a marvelous day today, mostly focused around the visit of his cousins Nicholas and Nathan, as well as Aunt Pat and Uncle David. Being a Monday, the day started out with a visit to the Tampa Clinic for a blood test. Chris' blood test results were: white blood cells dropped to 2.2 (normal: 4.0 - 12.0), hemoglobin dropped to 12.0 (normal: 11.5 - 14.5), platelets dropped to 32 (normal: 150 - 450), while his ANC rose to 800 (normal: 1400 - 7400). There were no formal test results from his bone marrow biopsies/aspirates done last week. However one of the doctors did receive some information. Normal bone marrow cellular activity is represented in a test as 100%. In Chris' case, his bone marrow was at best ranked as functioning at the 30% level in one of the four bone marrow samples taken last week, while the other three sites languished at around 10%.

As a result, Chris will not be able to receive any chemotherapy for quite some time (if ever). It seems that most of the doctors familiar with Chris' history are leaning toward prescribing Accutane for him again. As you may recall, Accutane is now generally used in the "cleanup phase" of most neuroblastoma treatment protocols. It is easy on the bone marrow, but we're not too sure how effective it will be on a known (although small) tumor in his liver. Accutane is thought to mature neuroblastoma cells (not kill them like chemotherapy does) so that they cannot reproduce and grow into larger tumors, but that has only been effective against tiny amounts of disease thought to exist in the body even though they do not appear in the medical tests. A tumor of any measurable size is comprised of millions of cells; Accutane may not be enough to be able to neutralize a tumor, no matter how small. Nonetheless, it does provide something of an option, given the fact that chemotherapy is now out of the picture. It is also tough on the liver (and other body organs), so as before, we'll have to watch his liver function test levels to make sure that he can handle that drug as well.

In reality, Chris has received so much harsh treatment for so long that his body is having a tough time being able to deal with it. Yet some of the cancer is known to have survived all of that punishment over more than 5 years. Neuroblastoma is such an incredibly difficult disease to fight. Chris is tough, but his body needs some rest from treatment. If we give his body the rest that it really needs, then we also give the cancer the time and environment it needs to grow and overpower him. He is really between a rock and a hard place, particularly considering that the treatment options are so very limited. We will of course continue to explore options though and to keep the faith.

While at the clinic, Chris dropped off some toys that he donated, as well as some German candy that Mom had brought back for the clinic staff. On the way home, the guys stopped off at the church next to Chris' school to give the "Candyman" some candy (he frequently gives out free candy to the kids after school). The staff accepted the candy on the Candyman's behalf, but they told the guys that the Candyman (who has diabetes) had an amputation because of his disease. Dad had to explain what that meant to Chris back at the car; Chris got a bit upset over that news as he likes the Candyman. He realizes that things like that are part of what the Candyman must do to battle his disease, too.

The next stop was to pick up a new set of curtains. While at that shop, Chris picked out a small handheld back massager for Mom. They then went to the pet store to find a new special toy for Genie. She truly loves to chase the wooden car that Chris made at camp, but we're afraid that the soft wood may splinter and hurt her. So we're searching for a hard plastic car that is strong enough to not fall apart in tiny pieces when chewed by a dog.

The guys finally got home and waited for the cousins' visit. While waiting, Chris played some games on the Internet, and he and Mom started working on creating their own video game (remember, Chris went to summer camp to learn how to do this). It was quiet until early afternoon and the cousins showed up. Things got quite busy and the cousins played some video games, worked on creating one, and played one of Chris homemade video games. One video game is an interactive game with the TV. Chris impressed everyone when he played the karate variant of the game. We then all went out to dinner. Once home again, all of the cousins and Dad went out for an evening swim. The boys really had a blast together all day, and it was a wonderfully relaxing visit.

Medically, Chris had another good day save for getting stomach cramps during dinner. His fingertips have faded quite a bit.

Joke of the day -- What do you call a loony spaceman? An astronut.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby Luke P., and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, August 1, 2004 9:32 PM CDT

Hi Everybuddy!

Chris' day was quiet, well, for him. He got going this morning when Genie somehow managed to lay on him like a blanket. After having breakfast with Mom, the two of them set out for church. Afterwards, they came back for Dad to take him to lunch and to pick up yet more medicine. Soon after doing those errands on this very rainy day, we headed for the theater to watch the new movie, "Thunderbirds." Unlike its 60's -- 70's predecessor (which was a puppet TV show), this one had real actors. The guys liked it more than Mom did; it is definitely a kid's movie but was still exciting.

After the movie, we found good reasons to have Chris walk from one end of the mall to the other. We noticed that he still tends to walk a little "tippy-toed." Dad thought that maybe this contributes to why he tires easily when walking. It is probably a holdover from the chemo drug Vincristine, which is known to cause such things, but we're not sure. He stopped by his favorite jewelry kiosk when he saw that his favorite salesperson was there. She gave Chris and Mom a big hug and Chris used some of his allowance to buy two more charms for his Italian charm bracelet. Dad thinks that more guys would buy them if they had a modular watch that could be added in the links. We then walked to stores from one end of the mall to the other, so Chris had a fairly good workout. Later we stopped by the supermarket for the weekly shopping. There Chris spent the last penny of his allowance on a new Jughead comic book. For some reason, he really likes Jughead and Archie comics.

Once home, we did the last things needed to get the last of Mom's laundry and stuff from Germany cleaned and put away, as well as to get ready for Nicholas and Nathan's visit tomorrow (ok, Aunt Pat and Uncle Dave are coming, too). Chris and Genie got into a mini-dog pile tonight during story time when Chris tried to get on his bed (Genie was on it at the time). The two of them sometimes play a game in which either one of them tries to keep the other one off of the bed. It's funny.

Medically, Chris had some more stomach cramping at bedtime. He still has those red fingertips. We also believe that he'll probably need platelets tomorrow based on the appearance of a scratch the Genie gave him during yesterday's dog pile

Joke of the day -- (from Uncle Tom) -- Did you hear about the monkey who left bits of his lunch all over the computer? His dad went bananas.

Sadly, we must also let you know that Alex, of "Alex's Lemonade Stand" fame (she was featured on a couple of prominent television shows including "The Oprah Winfrey Show," about a month or so ago for her fundraising efforts to assist with neuroblastoma research) passed away peacefully today. Although we never met her personally, we certainly know about her through our neuroblastoma contacts. Alex was an absolutely amazing 8 year old girl who was responsible for raising over $700,000 toward her goal of $1 million. Please visit her website: www.alexslemonade.com. Here in Tampa, we are aware that our ever supportive volksmarch club (Suncoast Sandpipers) will sponsor one of Alex's Lemonade Stands at a walk event on Saturday, September 18, 2004).

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby Luke P., Liam, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, July 31, 2004 9:14 PM CDT

Hi Everybuddy!

Chris had a really great day today as it was a big scouting day. Chris, Mom (yes, she got up early in spite of jet lag issues), and Dad went to a local park and set up all sorts of outdoor games, snacks, and the camper/van in support of Chris' Webelos patrol's effort to earn their forestry pin. Chris was very excited about getting together with everyone. We also learned today that scooters don't operate well on the compacted sand park road (Dad took the fall on that one).

After a Mom-cooked breakfast, we headed for the park. The goal was to help the scouts earn their forestry pin. Dad had prepared some handouts, picked an educational movie, and picked a hiking route for the boys to explore. We also set up badminton, volleyball, horse shoes, and croquet to do after the training aspect of the meeting. After all of the guys got there, the scouts went into the camper to watch the movie "The Magic School Bus Goes to the Rainforest." This helped the boys understand what forest structure is all about. After the movie, Dad taught some short classes prior to going out on the trail to identify in a real forest environment everything that they had talked about. The scouts did quite well and had a good time.

Once the "formal" part of the meeting was over, the scouts started with the outdoor games. Interestingly, croquet was the game of choice. Although most people playing were interested in playing "normal" croquet, one scout was only interested in "sending" his fellow scouts' croquet balls all over the field. He had earned the nickname "Death Star," which may stick with him for quite some time. As people finished croquet, the game deteriorate into "poison ball" as the focus changed from going through wickets and hitting sticks to bump into each other's balls and "sending" them about. It was "different," but it was apparently fun for some of the scouts. Several scouts and their dads played badminton. There are some pictures of the event posted to Chris' website.

Chris was pretty much red after the walk, thanks to the heat and humidity. His fingertips got red, again, but that was different -- like they did before. We'll check with the dermatologist in Norfolk for advice and a possibly local referral. His fingertips get quite red.

Chris and Greg left the park a little early (courtesy of Greg's dad) and they went to Greg's house. Mom and Dad waited until the last croquet game had finished before packing up. Mom and Dad then went home. Then Mom went to pick Chris and Greg up to take them to Chuck E. Cheese. The two had a great time, ate well, and earned some more coupons toward their goal (they are saving their ticket points for a large prize, which they intend to share jointly). Both of them were somewhat disappointed when they learned that the camera that they were trying to earn was not in fact a digital camera. The boys wanted it for some sort of future "movie" project. After a brief stop at home to pick up a bathing suit, Chris then went back over to Greg's house.

Greg's Dad dropped Chris off as his family had something to do this evening, then we hit the shopping trail for some needed things. One thing that Chris "needed" was a Marvel comic book card game (that Mom and Dad didn't know existed). He used his allowance money for the purchase. We also stopped by our loyal pharmacy; the technician hadn't seen Chris for a while. The two like to joke around, so the technician paged Chris back to the pharmacy (Chris had been walking around the store while Mom and Dad purchased the prescriptions). The two guys then exchanged movie "reviews." Now the pharmacy technician intends to see the movie "I, Robot" as a result of consulting with Chris. We then went out to dinner as we were already out.

Medically, Chris had problems with some stomach cramping and those bothersome fingertips. Thankfully, the red fingertips don't seem to adversely affect anything. He can still feel with the and they don't hurt or itch him. He also has a couple of red stripes: one on his leg and one on his arm. They are complements of Genie, who got so excited as she played with Chris that she accidentally swiped Chris with one of her paws. The stripes are really a line of little red dots, petechiae, where one of her claws got him. The skin was not broken, but it's one of those signs that the platelet level is low.

Joke of the day -- When a teacher closes his eyes, why should it remind him of an empty classroom? Because there are no pupils to see.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby Luke P., Liam, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, July 30, 2004 8:50 PM CDT

Hi Everybuddy!

Well, the whole gang is finally back together as we picked Mom up today from her flight back from Germany. Her flight was "pleasant but long." We can believe that.

Chris' first mission today after breakfast was to get his blood test done at the Tampa Clinic. It went well and he didn't require any blood products nor was his ANC too low as to preclude him from doing things (like going to the airport to pick up Mom). Chris' blood test results were: white blood cells rose to 2.4 (normal: 4.0 - 12.0), hemoglobin rose to 12.3 (normal: 11.5 - 14.5), platelets dropped to 38 (normal: 150 - 450), while his ANC rose to 700 (normal: 1400 - 7400). There were no test results from his bone marrow/aspirants nor was there any news about treatment options as they are waiting on the bone marrow test results.

Chris had the nurses in stitches today as for some reason this morning he finally remembered about five riddles that he learned at camp. They're not necessarily good riddles but they were fun and the nurses and some of the patients enjoyed hearing them.

After the clinic visit, the guys headed for home to do some last minute things before Mom returned and so Dad could finish up the big pool project. Chris even volunteered to clean the windows in Mom's car so she'd be able to see better when she returns to work. In the confusion, Chris and Dad forgot to bake the customary Welcome Home brownies although everything else got pretty much accomplished. The guys remembered the brownies later in the day on the way to the airport (sorry Mom).

Chris kept busy doing some last minute projects getting the house ready for Mom and playing a little on the PlayStation 2. He was finally rescued when Greg called and asked if he could come over to his house. Apparently, his family was out driving because they arrived shortly after.

Chris had a great time there and went swimming, rode his scooter, and played games with Greg and his older brother. He was ready to pickup Mom though when Dad came by to pick Chris up from Greg's. On the way to the airport, the guys called Grandma and Grandpa's to say good-bye to Uncle Tom and Cousin Jane who were heading back to France but they just missed them. Geesh!

Medically, Chris had another good day save for his fingertips turning red today. This will be a clinic topic for Monday as its been three weeks since Chris' last had some G-CSF and more time than that since his last chemo.

Joke of the day -- What does a jellyfish have on its tummy? A jelly button!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby Luke P., and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, July 29, 2004 9:28 PM CDT

Hi Everybuddy!

Chris had a nice day today even though he only occasionally saw Dad during the morning. Dad was working outside on a project around the pool. What made it cool for him was that he finally finished the Spider-man 2 game. There are other features that he can play but he won the main game. He was so happy about that he had to come outside and tell Dad and he would later tell Mom during her phone call home.

The other aspect about today that made it a great day was that Chris and Dad went over to Greg's house for dinner and then Chris got to play with Greg for a few hours. Dad had agreed to meet with some Boy Scouts who are just beginning to work on their Eagle Scout project. Since Dad had done one (albeit a very long time ago) to become an Eagle Scout, he had been invited to talk to the scouts about what to expect and how to identify projects that they could get behind and do (Greg's older brother is one of those scouts). Both the meeting and Chris' evening fun went well.

In Dad's absence, Chris did some neat things with Greg and one was to play the game "Twister." If Dad had been there he would have nixed that as he had only removed Chris' dressing from the bone marrow aspirants a few hours before. Sure enough, the guys noticed that one site had opened up and bled a little when they went to clean Chris up later in the evening. Everything is copasetic though. The other neat things they played was some board game in which players apparently get to "murder" other players (well, the board players at least). Dad didn't get to see much of it but it was causing a lot of laughter.

Chris got to eat something called "Cowboy Beans." It is a recipe that Greg's Mom got at Yellowstone National Park. It was sort of like a sweet chili kind of dish and Chris liked the soup part (he isn't much into beans). He also got to eat some of her cookies which he calls, "special cookies."

Chris did get to speak with Mom today and Dad missed a lot of the conversation. Dad knows that he gave her the blow-by-blow of the Spider-man 2 victory though. They also made some tentative plans of things to do when Mom gets home late tomorrow night.

Medically, Chris had a good day and when Dad initially removed the dressing, the sites looked great. Apparently, it would be wise to wait at least two days before attempting to play "Twister," however. He did have some stomach cramps at bedtime tonight but a Benedryl helped remedy them in short order.

Joke of the day -- How come the Dalmatian couldn't hide? Because he was already spotted!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby Luke P., and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

Wednesday, July 28, 2004 9:42 PM CDT

Hi Everybuddy!

Chris had a really long clinic day today as today he had his bone marrow aspirants. While he is waiting for the procedure, he isn't permitted to eat or drink. It makes for a long day when the procedure isn't until 1:00 PM and you haven't eaten since 7:00 PM the night before. He also had to show up at the clinic at the "usual" time in order to give them enough time to order and receive platelets (that he thankfully didn't need today).

The day started with Genie finally getting to awaken Chris. Today, she laid all over him and she certainly got him going. We held off to the last possible minute as he couldn't eat or drink anything this morning. At the clinic, Chris was a "training kid" for an experienced nurse that is new to the world of pediatric cancer. She was learning how to access his mediport. She didn't do too badly for a first time and he gave her a happy face pin. She appreciated it as she was nervous and enjoyed the laugh. Chris helped diffuse some of the angst in the room right away when the two nurses came in (the new nurse and the trainer). He asked, "Hey, what's this, good nurse, bad nurse?" (like good cop, bad cop). They understood right away and things went well with a lot of humor in the room.

Chris' blood test results were: white blood cells dropped to 1.8 (normal: 4.0 - 12.0), hemoglobin dropped to 11.3 (normal: 11.5 - 14.5), platelets were 43 (normal: 150 - 450), while his ANC dropped to 600 (normal: 1400 - 7400). As its been almost a month since his last dose of chemo, his counts really shouldn't be declining. Dad and the doctor spoke and she had been able to speak with the New York team. She is sending them some bone marrow samples and scan reports today. A doctor up there doesn't think Chris could get antibodies again (as he keeps developing a HAMA) but Dad's not so sure since its been almost a year and a half and a lot of chemo since his last cycle of antibodies. Dad had mentioned possibly doing Accutane or something of the like to keep something going after Chris' cancer and the doctor had similar ideas although maybe not with Accutane. She's still compiling options.

After getting accessed and all, the guys had three hours to kill but elected to hang around the clinic in case things moved quickly in the morning session which they did. Chris killed some of the time by teaching the clinic's child life therapist about five good card tricks. She wants to teach other kids. Chris did make it into surgery about a half hour before the scheduled time. Everyone treated Chris like and old friend. He and a girl from camp hung out in the surgery's waiting room before being called in and they had a lot of fun.

When Chris awoke after the procedure, he was alert but a bit on the grumpy side (but not too grumpy) and sometimes "sad." He had a new recovery room nurse who still thought that he was great and the two joked. He was quiet back at the clinic when it was time to get deaccessed. Back at the car, he was became really sad. Such is the recovery process from "sleepy medicine" sometimes. Although the original game plan was to link up with Greg and his family at Busch Gardens, Chris didn't think he was up to it. We ended up going to a store and had lunch at their refreshment stand (they have Pizza Hut pizza) and then shopped. When we finished shopping, the sky burst and pretty much everyone stayed in the store as it was torrential. As if Chris hadn't waited enough today, the guys waited about forty minutes. It was just raining too hard and Chris has four dressings that he just couldn't get wet. Dad got drenched but he and the store worked out a special pickup procedure for Chris.

Once home, the rain had slackened enough for him to get to the house and then he played with Genie and called Greg. It turns out that the rain had deterred Greg's family from going to Busch Gardens so Greg ended up coming over. Chris was very happy and the two played on computers and the PlayStation 2 for a while. The weather improved enough for the two to ride bikes for a while so they did get outdoors. Although they wanted to, they could not go swimming today as Chris has four dressing over his bone marrow sites. During this time, Dad spoke with Aunt Pat and they setup a meeting of the cousins for next Monday. Chris was really excited about that news.

Although Greg had eaten dinner, he hung around while Chris ate his and Chris introduced Greg to carrot cake (one of Chris' favorites). Greg liked it too. After dinner the two played a game for a bit and the next thing Dad knew, they were asking him for some drum lessons. Dad obliged and Greg did pretty well for a first time. Chris decided to do his own thing that also sounded pretty good. They're thinking about starting a band called "Swedish Babies" (there is a picture in the music room of a German toddler hiking a Volksmarch -- the inspiration for the name). Go figure! Chris also got to watch two movies today: "Ace Ventura, Pet Detective" and "Dudley Do-right." He enjoyed them both.

Medically, Chris had another good day but was a little emotional coming out of the procedure. He didn't have any other side effect problems today.

Joke of the day -- How did Benjamin Franklin feel when he discovered electricity? Shocked!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby Luke P., and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

Tuesday, July 27, 2004 8:56 PM CDT

Hi Everybuddy!

It was a quiet day for Chris but he still had a good time. He awoke on his own (much to the disappointment of Genie). He offered to go back to "sleep" so that she could get him up but before he could do it she started playing with him and her rope. After a nice breakfast, the guys decided to do some shopping (for school supplies) and then go to lunch and then on to Busch Gardens (Chris starts school next week).

With a plan at hand, the guys went into the execute mode and Chris picked out the supplies he needed to include a new school backpack (with more padding than last year's -- it will work out better when he is accessed). He likes it as there is a pocket to put a radio in (although they're not permitted at his school).

The lunch stop was to -- Mel's Hot Dogs. Mel was not in but the quality was still there. Amazingly, Chris had to work hard to finish his second hot dog (and he doesn't even eat the buns). He also said the he was getting tired (?) and might not want to go to Busch Gardens. As it turns out, as soon as we walked out of Mel's (which is next to Busch Gardens) a thunderstorm set in so we just headed for home. While enroute, we called Greg's Mom and arranged to linkup with Greg later in the day. On the way home, we stopped for some more medications for Chris and decided to stop by his karate school (only a few doors down from the market). He got to see the school's master and it was good that the two got together. Depending on Chris' treatment protocol, Chris is again seriously considering going back to karate. He misses breaking boards (who wouldn't)?

At the appointed time, Chris and Dad got Greg and the guys decided to go swimming before another thunderstorm came to visit. They made it and spent a few hours in the pool. They then visited a website where kid's post homemade cartoon movies that always break Chris up laughing. Their next exploit was to play Spider-man 2. Before Greg had to go, the boys went out on the bikes. Chris has a weird looking bike that you can sit in. The pedals are actually above the front tire and you turn by leaning into the side of the bike of the turn. It isn't an easy bike to ride and it has given Chris, Greg, and Dad some difficulty in the past. Today, Greg was riding it like a champ so Chris is going to be talking to him to see how he managed that. Unfortunately, Greg had to leave before Chris could gain any insights.

After Greg left, Chris and Dad worked on some things for Saturday's upcoming scout get together at a park that Chris' patrol once planted trees at for their conservation awards. They then went out to dinner and Chris earned some bonus allowance for answering some math questions. Although Chris has never had anything resembling algebra, he and Dad play a game where he solves a problem using a variable (like x). Chris kept clamoring for harder problems (he does theses normally in his head) so Dad gave him his first ever double variable question: 3x + y = 9 and 2y +1 = 7. After a few minutes contemplation (during which he wrote this one down), he solved the problem. In consolation, the guys went next store to a bookstore where Chris was treated to the book, "I, Robot" (we'll see if he can get through an Isaac Asimov book) and he bought a new Simpsons book with his allowance. Dad is definitely not sure where Chris is getting his math training.

Chris and Dad did get to speak with Mom today. As she is in a temporary billet, she doesn't have a phone in her room so she calls in from a pay phone (on a noisy Army base). She is also six hours ahead of us so it gets late there when she tries. Chris had to tell her all about shopping and other things he's done over the week.

Medically, Chris had a good day save for becoming tired at lunch. Having said that, when he and Greg were in the pool, it was nonstop activity for him so maybe he just didn't want to go to Busch Gardens today.

Joke of the day -- Do you want to hear a construction joke? Sorry, I'm still working on it! !

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby Luke P., and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

Monday, July 26, 2004 8:13 PM CDT

Hi Everybuddy!

Five and a half years of chemotherapy has seemingly caught up with Chris and even after a month from his last dose of chemo, his blood counts continue to be poor. As a matter of fact, he wasn't permitted to start today's chemo cycle. The oncologist is now thinking that Chris' marrow might be suppressed to the point that it might not be able to recover and support cellular production. As Chris has no stem cells in reserve, his marrow cannot be recovered in that manner and getting stem cells via another source might give his remaining cancer an opportunity to regroup. It is an undesirable situation to be in the fight.

His blood test results were: white blood cells were to 2.0 (normal: 4.0 - 12.0), hemoglobin was 11.4 (normal: 11.5 - 14.5), platelets were 20 (normal: 150 - 450), while his ANC was 800 (normal: 1400 - 7400). These aren't great counts after a break of nearly a month off of chemo. The doctor decided not to administer any chemo this week and will put off any decision until she reviews the results of this Wednesday's bone marrow aspirants and biopsies. This may trigger a switch to a new unidentified treatment. As Chris still has active disease, some sort of treatment is critical. The doctor has been in contact with the medical team at Memorial Sloan-Kettering Cancer Center and has begun to acquaint them with Chris' current situation and also obtain their requirements for some bone marrow samples (we still send them some for research purposes). Times like these are always stressful as the "next step" is always unknown and difficult to ascertain. Its like a crossroad with no road signs. Chris was "happy" that he didn't have to do chemo this week but fully understands the implications of the situation. He basically said "Bring it on!" Chris was also invited back for a platelet transfusion in the early afternoon.

While at the clinic, he managed to show all of the nurses all of the card tricks that he learned at camp. Several were very surprised that he didn't try to pull off any pranks during camp (as was Dad). He also started showing some of the nurses his new skills juggling the "flower sticks" (the juggling sticks).

After the morning's clinic visit, Chris and Dad headed for home. Chris played a video game for a while and took Genie out for a run in the back. Most of the time was devoted to preparing and eating lunch as Chris had to get back to the clinic again. Back at the clinic, Chris got accessed and managed to show all of the remaining nurses his new juggling thing. He even got some to attempt it, too. Everyone pretty much enjoyed the show and had a good laugh when they got to try. Chris also got a treat today; the clinic just received a new PlayStation 2 game and TV console that can be wheeled around to patients. It was Chris' idea of a few years ago and he even picked the colors (it took a while to get funding). Needless to say, the transfusion came and went and he was almost clueless that it was even going on.

Once finished the second clinic visit, the guys headed for home. Chris got a call from Greg and learned that Chris' revised clinic schedule is going to preclude the two going to Busch Gardens on Wednesday which is too bad as Chris starts school again next week. Chris took Genie out for a run and then settled down to play his Spider-man 2 game again. He was happy to learn that one of the "Kentucky Uncles" and his family will be in the area this weekend so Dad has been "assigned" a mission of trying to get him and his two cousins together (that Dad readily accepted). Mom will be pleasantly surprised. Aunt Pat will be happy that Chris asked to go to KFC and we did. We like to keep her happy.

Medically, despite the poor counts, Chris had a good day and had no problems during the transfusion. After dinner, Chris had a small bout of diarrhea and Dad gave him some Imodium and soon after, all was fine.

Joke of the day -- How did Darth Vader know what Luke was getting for Christmas? He felt his presents!

Today was one of those Birthday events which is pretty interesting. Grandma, Granddad, and Aunt Belinda all share today as their Birthday. Chris passed on birthday greetings to Grandma and Granddad (the later he sang "Happy Birthday" into the answering machine). He did get to "hear" from Granddad (also via our answering machine) and was happy to learn that Granddad and Uncle Brian got to go to a beautiful lake for his Birthday. Happy Birthday Grandma, Granddad, and Aunt Belinda!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby Luke P., and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

Sunday, July 25, 2004 9:20 PM CDT

Hi Everybuddy!

It was another interesting day for Chris and this time Chris beat Dad into the den this morning, possibly with Genie's help. Dad still got stuck walking Genie. The guys hung around and Dad watched Chris play a video game for a bit (Chris likes that). Together, they figured out how to beat one of Spider-man's villains. Chris did break for breakfast.

Right after breakfast, Chris called Greg. After some discussion, everyone decided that the best time to get together was in the morning, like in about thirty minutes as Greg had some things to do in the afternoon. The original plan was to go swimming and then out to Chuck E. Cheese pizza. The boys got enamored with Spider-man 2 while Dad got the pool ready and that took some time. Once in the pool, Dad got Chris into the "scuba" mode as they did some things down at the bottom of the pool. That got Greg interested and then he and Dad went down to the bottom and Chris would come by and act like a fish. As Greg's Dad also dives, maybe the boys will take that up someday. Dad also got the boys to race (he wanted to see if they had improved in their swimming). They boys had but Chris really goofed off all during the "race." There was also ample time to goof off, too.

After swimming, time got a little tight so Dad offered them some alternatives to rushing through Chuck E. Cheese and the boys decided to wait until after chemo one day and go later in the week. They continued to play Spider-man and Dad fixed them a big lunch (seemingly with everything that the two boys liked as they ate well). Chris and Dad then dropped Greg off and headed to a mall to see if they could find some "devil sticks" (some juggling sticks) as Chris had learned to use them at camp. Just as they got into the mall's parking lot things got interesting for Chris. The engine coolant light came on and Chris got to see (and smell) what coolant vapor smells like. Since the engine had to cool a bit before Dad could look at things, they continued on with their shopping mission. They were successful at Chris' favorite games store. The lady that owns the store just loves Chris and she also presented him with some free juggling balls. She had even brought in a picture of her dog to show Chris (an earlier agreement) and was disappointed when Chris didn't have a picture of Genie. Chris promised to show her one soon. We then walked over to a car parts place and bought some antifreeze in case it was needed.

Dad crawled around the car for a while and didn't detect the source of the problem. After refilling the coolant reservoir and radiator and letting the engine run a bit with no problem, they made for home. Most of the way home some steam showed up again and Dad pulled over. This time he saw some coolant being "pumped" from the vicinity of the water pump (apparently a bad gasket). As most of the coolant was still present and they were two miles from home, the unanimous vote was to drive it back and so they did. Chris didn't much care for the smell but he thought that seeing the leak was cool (Dad was less thrilled).

Once home, Chris played his game again and then took Genie out in the back for a long run. Genie had the roam of two acres and Chris said she explored everywhere but the swamp (she doesn't do "wet" well) -- some border collie. Chris then came in and try to use the juggling sticks only to learn that one of the catching sticks was missing. They guys then went back to the mall (using the camper) and exchanged the juggling sticks. Chris had gotten a picture of Genie to take back to the mall but left it in the garage so the lady had a good laugh at him forgetting Genie's picture again. They then went down to the other end of the mall to the bookstore (so Chris would get some exercise). On the way back, Chris saw one of his favorite people (a lady who runs a jewelry kiosk) and snuck up on her. She loves Chris and the have a good time. She asked if she could give Chris a going back to school gift and although Chris tried to decline it, she won. Chris had his "charm bracelet" (it looks like an expandable watch band) taken last year so she gave him a new one with a replacement charm. He chose one with a crucifix. Both he and she can add or subtract charms easily. He gave her a big hug and then the guys headed for home.

Back at home, Chris showed that he can actually juggle the stick with the catching sticks. Dad tried and can't juggle but can twirl the things with the catching sticks. Together, they make a good act. Chris asked for pizza for dinner and then in fact had pizza while watching the movie "Sneakers" for his final dinner before tomorrow's next cycle of chemo (its the hard one this week).

Medically, he had a good day save for at dinnertime. Then, he developed some stomach cramps. Dad gave him an Imodium and soon after all was fine.

Joke of the day -- What did the pencil sharpener say to the pencil? Stop going around in circles and get to the point.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby Luke P., and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

Saturday, July 24, 2004 9:01 PM CDT

Hi Everybuddy!

Chris must still be on camp schedule as when Dad got in from walking the dog (early in the morning), Chris was already awake (much to Genie's regret). He went right into playing Spider-man 2 while Dad cooked breakfast. The big event today was to linkup with our friend Cate and go see the movie "I, Robot." Mom and Dad saw it before Mom left for Germany and we sort of thought that he''d like it. He did. We all did. Dad ended up answering questions all day about why the "head" robot made some logical decisions to do things ands why people reacted to it like they did. We then all went out for lunch.

Chris and Dad went shopping for a repair part at a big hardware place but for some reason, Chris' energy quickly lapsed so they stopped and headed for home. Enroute, Chris called Greg to see if he could come over (apparently his energy returned) but unfortunately, Greg could not. Chris spent much of the afternoon playing his new game, sometimes helping Dad, or speaking on the phone.

One phone call was from Germany and initially, it was Cousin Lisa. She sounded great and Chris really liked hearing from her (she was always nice to Chris). Next came Mom who told Chris about touring around the western part of Germany and seeing a castle and other things. She finally got out for some German cuisine, too. She is staying at "Uncle" Heini's house and she and Lisa will be on the road again tomorrow.

Another phone call was from Grannylyn and Granddad. Chris told them a bit about camp and got caught up with some things going on in Kentucky. He also wished Granddad an early "Happy Birthday."

In honor of Mom and Lisa getting together, Dad grilled some bratwurst for dinner along with another good German side, macaroni and cheese (yeah, right). Mr. "I like sausage now" liked the bratwurst. Chris enjoyed his "brat" while watching the movie, "The Mummy" (one of his favorite).

Medically, he looks great but did seem to get tired in the hardware store. About an hour after dinner, he also got a small stomach cramp but it eventually settled down.

Joke of the day -- What did the lawyer name his daughter? Sue!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby Luke P., and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

Friday, July 23, 2004 9:46 PM CDT

Hi Everybuddy!

Chris is back and he had a great time at camp. He was really surprised and pleased when he found out that his friend Greg (hiding in the camper) had accompanied Dad to pick Chris up from the bus. Dad and Greg also had some surprises today when they learned that Chris' bus was going to be one and a half hour late. They did what Chris and Dad usually do in that sort of situation, had a picnic and went window shopping.

Chris' summary of camp is that the food is well - OK. The counselors were great. The weather was not as bad as in Tampa. He did a lot of activities (like make Dad a "guitar"). He just had plain good old fashion fun despite only knowing only one kid from last year. There were two girls from our clinic there, too but he didn't bump in to them much. Dad will be working on getting some pictures up on the web page soon. Chris looks great.

As far as Chris and Greg, they didn't miss a beat. The guys watched the movie "Matilda" on the way back across the bay to the house. They then spent much of the afternoon either playing a video game, testing Chris' new test toy from Wild Planet (he is a toy tester of sorts and has to send back a report), or trying to drown Dad in the pool. Chris is fearless in the pool and keeps a cool head even when wrestling Dad.

Greg had some previous engagement so he didn't stay for dinner so Chris and Dad went out to eat and then watch the new movie "Catwoman." Chris thought that many of the camera angles and the story line were confusing (see what one class does at summer camp). Dad liked it a lot more than "Spider-man 2." Both thought that it was pretty exciting.

It was evident at bedtime that Chris was tired. Despite that, he wanted to show Dad some new card tricks he learned at camp (he'll save them for tomorrow, however). He also tried to juggle some sticks using some sticks but thinks he needs some like the ones he used at summer camp.

Genie was not over looked and was soon in the middle of the laser tag testing (the new Wild Planet spy toy). She got quite a run-around. Chris also had a tug-of-war with her.

Medically, he looks great and he said that his counts were "good" (he only had one blood test all last week). Dad did notice that he didn't see any bruises after a week at camp.

Joke of the day -- What is "out of bounds"? A tired kangaroo!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom (Guten Nacht)!

Love,

Chris, Alison and Pat

Monday, July 19, 2004 9:07 PM CDT

Hi Everybuddy!

Dad hopes that the subtropical rainfalls aren't affecting Chris at camp. As far as Chris is concerned, no news is good news. Also, Mom did arrive safely in Germany.

Joke of the day -- (from Uncle Alex) -- "What goes up a chimney down, but won't go down a chimney up?" An umbrella.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, July 17, 2004 9:41 PM CDT

Hi Everybuddy!

Chris is off at camp. After an early start and some last minute packing, we headed over to the American Cancer Society Center for a pre-camp sendoff party. There were a variety of activities for the campers, including Barnes and Noble having sponsored people to read stories to some of the kids.

Chris linked up with some of his friends there; almost all of the kids waiting to board the bus were girls (kids were to arrive at the camp from other locations, so there will be more boys actually at the camp). One teenager who has watched over Chris at camp for several years saw Chris as he walked in the door. In what seemed to Mom to be like a football play, that teen ran and dodged many other children and their parents in the party room after she spotted Chris in order to give him a huge hug that nearly swept him off his feet. He, of course, loved that -- who wouldn't? Chris also saw another (but younger) teen, who had been Chris' hospital roommate several years ago; she was the only girl roommate he had ever had. She is two years older than Chris, and due to the length of time since we've seen each other, we all barely recognized her. Those two ended up sitting together on the bus to camp.

We know that Chris made it safely to camp since later in the afternoon, his doctor (who is acting as this week's volunteer physician) called to sort out some medication questions. Although she's read about the supplements that we have given Chris for years, she's never seen them before. Since Dad had his medications divided for the daily distribution for each day of this upcoming week, the pills were all intermixed in the appropriate slot in the pill box. The doctor wanted to know what each supplement looked like (she already could identify the "real" medicines). We're glad that close attention is paid to such things.

Mom and Dad suffered through a day without Chris and actually went to a movie (even though it is one Chris wants to see --
"I, Robot"). Dad will probably take him to see it while Mom is away in Germany, after Chris returns from camp.

Speaking of Germany, Cousin Lisa called so Chris was able to speak with her before he left for the party bus to camp. She sounded good, but he was a little disappointed that he won't see her soon. She and Mom will try to get together while Mom is in Germany. It sounds like they'll have a great time.

Medically, Chris had no problems of which we are aware. He handled the farewell very well: he hugged, but then boarded the bus without tears. He found a window seat, then proceeded to wave for a couple of minutes before pulling out a book to read during the drive (Mom and Dad could see that because it took a few minutes before the bus pulled away).

Joke of the day -- What do you call an elephant that has had too much to drink? Trunk.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, July 16, 2004 9:22 PM CDT

Hi Everybuddy!

Well, Chris sneaked by this week without any further transfusions. The blood test results were: white blood cells rose to 2.4 (normal: 4.0 - 12.0), hemoglobin rose to 13.0 (normal: 11.5 - 14.5), platelets were 43 (normal: 150 - 450), while his ANC rose to 1000 (normal: 1400 - 7400). These aren't great counts but Chris got them mostly on his own. He'll get another blood test at the camp's clinic (known as "the Patch") on Monday. His primary doctor will be there as a volunteer oncologist, so she can keep an eye on him, too. Chris "warned" her that he's been packing "gags." That news of course came as absolutely no surprise to her. Dad can only hope that she's not out on the street next Thursday for the camp's traditional squirt gun encounter; Chris is bringing a powerful one. We also learned that another girl from the clinic is expected to be there, too.

After the clinic visit, Chris and Dad headed south again for Mom's office. The moving project is just about completed, but there was still some effort needed today. Chris was very well behaved and spent time reading and playing some computer games as Mom was attending meetings all morning. Chris and Dad enjoyed a nice lunch there; the staff had brought in some luncheon things for a farewell party for Mom, who will soon leave for two weeks of Army duty in Germany. The guys headed right home in order to make some progress in getting Chris ready for camp. Between the necessities, gags, and medicines, packing carefully is required. Not too long after arriving home, the clinic called to report that that while Chris was at camp, he should take some different medications in preparation for the chemo cycle using Irinotecan that is expected the week after Chris returns from camp. The guys' afternoon a bit as they headed over to the clinic and picked up the medicine. On the way back, they stopped to execute a shopping task assigned by Grandma with no luck. Chris is undeterred.

When Mom called to report that she was heading home, Dad told her about a difficulty he had experienced with the station wagon's cooling fan. We decided to drop the thing off for servicing tonight. The guys met Mom at the dealership, then went off for two last minute camp shopping tasks. We ate out at a restaurant where we'd previously bumped into Greg's family; Chris was looking around for another chance contact. The two weren't able to get together today at all. When we got home, we noticed that two sheer curtains were torn (no doubt by our "wonder dog"). Chris stood in front of her and declared himself her attorney. It was a spirited defense until we logically deduced that there perpetrator could only have been someone the size of either Genie or Chris. Needless to say, soon Genie was on her own, as Chris began defending himself. He was disqualified from providing Genie with any further representation due to an inherent conflict of interest. Instead, they began to run around and goof off.

Chris then received a telephone call that he took pretty well. His best friend from previous camping expeditions to camp called to let Chris know that he wasn't going to be at camp next week. He had just broken his leg! Chris was surprised and disappointed. The two then went on to chat for quite a while and quite a bit of laughter was involved. So close and yet so far.

Medically, Chris had a good day except being tired. His fingertips appear normal to Dad.

Joke of the day (a special submission from a special company) -- A sea mammal research group captured a most unusual porpoise on one of its trips. What made this porpoise so unusual was that it had feet. After they had photographed and measured the porpoise they prepared to set it free. "Wait a minute," said one of the researchers. "Wouldn't it be an act of kindness if our ship's doctor were to amputate its feet, so that it would be like all of the other porpoises?" "Not on your life," said another researcher. "That would be de-feet-ing the porpoise."

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, July 15, 2004 9:21 PM CDT

Hi Everybuddy!

Chris had an interesting day that started very early considering that it was an ordinary summer (no school) day. He decided to ride in with Mom to her office this morning. Eventually all of us ended up there as we tried to finish up a project associated with the recent move of Mom's office. Chris left home earlier this morning than he usually does for school; he sort of regretted not waiting for Dad, who drove there a little bit later after having waited for a store to open in order to pick up needed supplies. Chris had a reprieve from a kid-less day since his friend Bobby also came into the office to keep Chris company (thanks!). Chris showed Mom's coworkers how much fun a digital voice recorder could be, especially when he speeded up the tracking so that the recorded voices sounded like chipmunks. The two boys played some games, did some "spy stuff," and watched a movie.

The guys walked down the street a couple of blocks for lunch with Mom and Bobby, but Chris wasn't feeling quite up to snuff at the time (Chris' energy level still waxes and wanes, probably as a result of years of chemotherapy). Soon after returning to the office, Chris and Dad took Chris' friend to his home before heading home themselves. Chris was hungry by then, so they stopped for lunch. Chris napped on the drive back home but got animated once he linked up with Genie. The two goofed off a bit but Chris soon powered down a bit and watched some Simpsons for a while before asking Dad to go online with the computer. He visited a website for young (kid) movie makers and enjoyed watching other kids' movies.

When Mom got home, we almost had to tear Chris away from the website (he had a lot of laughs) for dinner. Chris was happy that we went to a restaurant near "his bookstore" and he even talked Mom into buying a book for him to read while at camp. Hmm . . .

Medically, Chris "red fingertips" look very much improved and almost gone. He had no additional problems until bedtime. That's when he started feeling nauseated, hot (he did not have a fever nor did he feel hot and/or clammy at the time, and the air conditioning was on), and restless. He's now trying to rest, having taken a Benedryl in hopes of reducing at least two of those symptoms.

Joke of the day -- What do you call a musical automobile? A car-tune.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, July 14, 2004 9:29 PM CDT

Hi Everybuddy!

It was another clinic day for Chris. If Dad had any doubts about last Monday's blood test results, they ended today: Chris' ANC was still only 800. Counts had dropped again. The blood test results were: white blood cells rose to 2.3 (normal: 4.0 - 12.0), hemoglobin dropped to 11.5 (normal: 11.5 - 14.5), platelets dropped to 18 (normal: 150 - 450), while his ANC rose to 800 (normal: 1400 - 7400). The doctor decided to give Chris a platelet transfusion but wait until Friday to decide about whether to start the G-CSF again (remember, he leaves for summer camp on Saturday). She was pleased that his fingertips are clearing, although they are still a little puffy.

Chris didn't see any of his regular friends at the clinic, but he did see one of his teenage "buddies" who is also going to Boggy Creek this weekend. There was also some discussion about the possibility of the other teen friend not being able to go to camp; the teenager and her mom decided to call the other teen's mom in order to make an appeal to let her daughter go. Dad thinks that she'd make a great counselor there someday, and due to her age, this is her last chance to go there as a camper.

Since Chris and Dad had some time to "kill" before the platelets arrived, they went shopping and got some things for Mom's office, Cousin Jane, and a movie to watch during the transfusion. Chris had a small personal pizza for lunch and actually ate the crust (finally). He liked it (duh). Dad got him a "camp vest," which is reminiscent of a scaled down fishing/adventure vest, but has numerous pockets for his gags (counselors, beware)!

After taking the usual premedications, Chris did fine with his platelet transfusion. He goofed off with one of his nurses; the two find new ways to surprise each other. Rather than using Emla cream (as he's done for so long), Chris now uses a spray on now in order to desensitize the skin covering his mediport when the mediport is being accessed with a needle. The spray is cold. For some reason, today Dad (who sprays the stuff for the nurse, whose hands have been sterilized) somehow got some on his left upper arm. Chris laughed about the "frost" on his bicep (there was some, too). A bit of spray usually drips down on Dad's fingers, so he can personally attest as to how cold the stuff gets.

After today's successful transfusion and observation period, Chris called his friend Greg, and was happy to learn that he could come over to visit for a little later in the afternoon. After Greg arrived a little later in the afternoon, the usual insanity occurred. Today, they worked very hard in trying to get Dad off the "magic fountain" (it's a bubble blower at the bottom of one section of the pool). The two never realized how to conduct a coordinated attack to dislodge Dad, although everyone wore each other out. Dad must have thrown each of them into the deep end over two dozen times.

When Mom got home, we took Greg to his home and then went to Pizza Hut (Greg preferred his own food at home to pizza -- go figure for a 10 year old . . .) where we bumped into a server who has taken very special care of Chris (she too is a cancer survivor) over the years. Chris was a little subdued (the two normally are "trouble" together). She noticed that he has grown quite a bit. It appears to be that kind of summer. After one short stop for some office supplies, we went home and played three-way keep-away with Genie. She had a great time but didn't run as much as usual (of course she still intercepted quite a few balls nonetheless).

Medically, Chris had a fair day. The color of his fingertips is almost normal. The doctor thinks that he looks great but is still a little concerned about his low ANC just before heading off for camp.

Joke of the day -- How can you tell elephants love to travel? They are always packing their trunk.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, July 13, 2004 9:29 PM CDT

Hi Everybuddy!

It was a day to let sleeping dogs lie, and that's just what Dad did with Chris and Genie. Dad finally woke Chris up a little after 11 a.m. since Chris had wanted to see the new movie, "Sleepover." He also wanted to pick up the newly released DVD, "Agent Cody Banks 2." Dad first got Genie going, then the two of them ganged up on Chris. It wasn't too difficult awakening him since he had apparently gotten a great rest; once reminded about some of the things that he wanted to do today, Chris got going. For the first time in a long time, he asked for sausage for breakfast. Dad thinks that maybe the Irinotecan suppresses his desire for sausage since he usually seems to like it.

Once all of the "morning stuff" was done, the guys headed for the cinema. Both thought that the movie was very pleasant and Chris is now getting into the "teen" movies. That's somewhat surprising since he never really was into Mary-Kate or Ashley preteen movies despite having had quite a few friends who happen to be girls. Chris also liked this movie's music. The next stop was to a store to pick up the new DVD. The game plan was to take it to Mom's office, where Chris was to watch it while Dad did some more work helping the office get settled into their new space. On the way, the guys stopped for a dunch and Chris had his daily dose of chicken. At the office, Chris kept himself occupied by exploring and playing a game since someone was using the area in which the DVD player and TV are located. When that room
finally cleared out, Chris watched his movie.

Medically, Chris had a good day despite having diarrhea problems periodically throughout the night (which probably contributed to him sleeping in). He felt fine at bedtime tonight, when he enjoyed a good wrestle with Genie. During his shower, Chris' scab fell off his elbow. It continued to ooze a bit for about an hour so he asked for a bandage so that he didn't have to worry about it as he slept.

Joke of the day -- Why do computer teachers never get sick? Because an Apple a day keeps the doctor away.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, July 12, 2004 9:09 PM CDT

Hi Everybuddy!

Well, we are finally back together, with the "road trip" crew having arrived home at a little after 2:00 this morning. Chris did a good job of keeping things interesting along the way, so Dad was not too tired to continue driving. Chris and Dad tried to sneak into the house without waking Mom (not too difficult, they thought), but Genie had other plans. Just as she does for Chris most mornings, Genie jumped on Mom and got her up. After a very short period of hellos, we all headed for bed. Dad wanted to get Chris into the Tampa clinic this morning because of both his declining platelet count and his recent "red fingertips" problem. As can be imagined with only a few hours of sleep, getting Chris up was a challenge. He and Dad were sort of like zombies, but Chris was a little more spry than Dad.

Chris' first serious effort after breakfast was a trip to the Tampa clinic. It turned into a longer stay than the two had anticipated since the doctor wanted to see him (she was kept well informed about his situation last week by the very professional staff of Children's' Hospital of the King's Daughters in Norfolk). The first step was Chris' finger poke. The blood test results were a bit surprising: white blood cells dropped to 2.1 (normal: 4.0 - 12.0), hemoglobin rose to 12.6 (normal: 11.5 - 14.5), platelets dropped to 21 (normal: 150 - 450), while his ANC dropped to 700 (normal: 1400 - 7400). Dad was quite surprised by the nearly 4000 point drop in Chris' ANC after being off of G-CSF for only two days. The doctor decided to wait until Wednesday's results before she made a decision about either ordering a platelet transfusion or restarting G-CSF injections. She, too, was unfamiliar with why Chris might have the red fingertips. She commented that it isn't too unusual for leukemia patients to get that sort of reaction, but those kids received different chemo drugs. She didn't seemed convinced that G-CSF (used to stimulate immune system response) might caused the problem but will await the dermatologist's letter from Norfolk. Chris was able to hang out a bit in the playroom, where he found one of his favorite teenage patients (now volunteer). The guys learned that she may not go to Boggy Creek Camp this weekend after all, so Chris was a bit disappointed. He didn't see any of his other friends today.

Chris was hungry after the clinic visit, so he and Dad had a "picnic" in the camper/van after the visit. Chris watched the movie, "Evolution" while munching on chicken. Once home, they unloaded the van and began the process of unpacking and laying aside things for Chris' next adventure: Boggy Creek Camp (he leaves this weekend for that camp). Chris also called his friend Greg but learned that he was at a day camp in the morning. Chris was helpful in the unpacking/repacking effort. Greg did eventually come over for a visit this afternoon. The two went crazy and it was a lot of fun. Swimming was out since a dark (thunder) cloud had settled over this part of Tampa. In fact, they squealed when a very loud thunder clap sounded nearby, accompanied by a momentary power failure. Oh well, the two had a great time together anyway, as did Genie (who had her balls and rope toy at hand). We took Greg out for dinner after Mom got home. The restaurant's children's menu had a fill-in-the-blank story, which those two filled out. Tonight, Chris brought along a small digital voice recorder so each boy recorded himself acting like an anchorperson. It was funny, especially when they speeded up the recording so that the voices sounded high-pitched.

Chris, Dad, and even Genie, were a bit lethargic today; even tonight's dog pile was a bit subdued. Yet, Genie did give it a run for the money for a short while though. We think she's happy to be out of the van.

Medically, Chris had a fair day, but for still having red fingertips, declining white blood count values, and stomach cramping. The last problem was a surprise (the cramping was bad enough that Mom could see Chris' stomach knot up with each cramp). He received Benedryl, and later Imodium, to help remedy the problem. We're keeping our fingers crossed on the blood counts but will act aggressively on Wednesday in an attempt to get things more "normalized" in time for his departure for camp. We're happy that for this year's camping experience, one of Chris' regular doctors will be the volunteer camp doctor.

Joke of the day -- Waiter, this soup tastes funny? Then why aren't you laughing?

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, July 11, 2004 9:11 PM CDT

Hi Everybuddy!

Mom is writing this update tonight from our home base in Tampa. Chris and Dad are still enroute home. As of a few minutes ago, they were still in Georgia, about 50 miles north of Jacksonville, Florida. There's still another 5+ hours to go. Dad will of course play that by ear in terms of if and when to rest for the night. Having left Norfolk around 10 a.m., they have pretty much driven straight through, but for a longer stretch break at Ft. Bragg (Dad's old stomping grounds from days gone by). Chris and Dad both sounded good and awake when they spoke with Mom a few minutes ago. They have passed the time by listening to movies, or in Chris' case, playing video games.

Joke of the day -- What do you get if you cross a wake up call with a chicken? An alarm cluck.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, July 10, 2004 8:04 PM CDT

Hi Everybuddy!

It was another "cool" day and Chris got to play in the mini-golf masters (OK, maybe the minors) and participate in yet another Kid's Olympics. He got a bit of a late start today but so did all the other kids. As Dad was working outside, Uncle Tom fixed Chris' breakfast and lunch before taking Chris, Jane, and Ryan out for a mini-golf "tournament." Chris had a fair day on the course but not quite as good a day as a few days ago. Yet, he still posted a respectable score.

While the guys were playing golf, Dad was over at Aunt Jackie's setting up the events for the Kid's Olympics. Today's events were badminton, horseshoes, croquet, swim relay, underwater swim relay, and timed dive. In addition to Chris (10), Jane (14), and Ryan (18), Aunt Jackie (over thirty) filled in the last slot and it ended up being the girls versus the boys. The girls smoked them!

In the badminton event, the girls dominated the play with the guys only scoring two points in a two out of three series. Horseshoes were much closer but Aunt Jackie threw two "sweet" shoes on her last throw on a two out of three series. Aunt Jackie (once in last) came from behind and just beat Cousin Ryan in croquet so at the end of the land based competition, the girls were the clear leader.

After a short break and refreshment, the aquatic competition began. The first event was the swim relay and it ended up being a tie. Chris came from behind to tie but we also think that Aunt Jackie got a leg cramp. That's Olympic competition for you. The next event was the swimming underwater relay and again the girls were the clear winners by half a length of the pool. The last event was the timed diving event during which the competitors had to recover five sunken rings. The guys came out on top finishing just four seconds ahead of the girls. Chris was on the second place team for the very first time in four Kid's Olympics.

One interesting aspect of today's competition was that it was Cousin Jane's Birthday. Additionally, Cousin Sean was having a party at which his band was playing so they ended up practicing during most of the competition. It was an interesting Olympics.

Soon after the Olympics we headed back to Grandma and Grandpa's before Cousin Sean's friends arrived in force (they are all in college). After a great meal, there was time for one more "sporting event," table fussball. Chris faired pretty well although outmatched by Cousins Jane and Uncle Tom. It was Jane's day when she buddied up with Dad and they decisively defeated Chris and Uncle Tom. Chris had a great time playing and is interested in getting a fussball game for home.

He's really had a super time this week and is really sorry to be leaving tomorrow. He does want to see Mom before she leaves for Army duty in Germany so he's ready to leave tomorrow. Also, he has to get ready for Friday's departure to Boggy Creek Camp. During this evening's call back to Mom, Chris read to here from a Simpsons' comic book then she read to him as usual.

Medically, Chris "red fingertips" look better in one respect but now appear more "puffy," almost like there are subsurface blisters. He doesn't have any more "burning" sensations though. We'll definitely be following up on this problem.

Joke of the day -- What candy do you eat on the playground? Recess pieces.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

Friday, July 9, 2004 10:06 PM CDT

Hi Everybuddy!

Chris had a long clinic day despite not needing any blood products. He had an early morning wakeup designed to get him to the clinic early enough to meet with an old friend and so that the clinic could decide what to do about him and his "red fingertips." We got there and linked up with a family friend Kylene who both wanted to see Chris again and get a chance to meet with some of the hospital's child life therapists (her major in college). Chris was thrilled to see her and after we were cleared up to the clinic (you don't just walk into a cancer clinic with a rash), the two started playing Uno. Chris learned that Kylene is quite good at Uno. Save for a break when the head nurse came out to look at Chris fingers, the two played Uno until Chris was called in for his blood tests. Again they drew a CBC and a blood sample in case he required platelets. He didn't. He could also discontinue the G-CSF.

Since Chris' fingertips were something the head nurse hadn't seen too frequently, the doctor on duty today decided to examine Chris. He was a bit stymied so he called to see if his favorite dermatologist was in today. Once her learned that she was available he offered Dad an appointment somewhat because Dad asked the doctor what to do if Chris started to complain about "burning fingers" in the car on the way back to Florida. After a long wait in an exam room, the dermatologist came in and was very effective. She quickly focused on something normally caused by certain types of chemo. While she was asking Dad about various chemo cycles, Dad noticed that G-CSF was on the list so he told her that Chris had gotten a dose today and it had been the eighth dose of this cycle (normally, it five doses). She seemed to think that the G-CSF was the most probable cause and she gave us some LMT to apply to his finger tips. Its not a significant problem but can be a nuisance to Chris.

Once armed with that information, we returned to the first clinic and finished up there and thanked everyone for their fantastic hospitality. They treated Chris like one of their own. We then called Aunt Jackie (at the dental clinic) and then headed over to McDonalds for a quick lunch enroute to the dental clinic. Chris now has had a panerex and some other X-rays taken. He has some new teeth soon to arrive, no cavities, and some wearing caused by gnashing his teeth. We accidentally discovered that he gnashes his teeth "to make music." Thanks Aunt Jackie!

Once clear of the clinic, we made two stops in preparation to tonight's "Unbirthday Party." When all of the cousins are together, we have an "Unbirthday Party" that they all attend as they're hardly ever together for each other's Birthday parties. Tonight's was great and Chris tried his first ribs. After the required wait, almost everyone headed to the pool where Chris again showed that he is quite aquatic now. Although he had complained of "being tired and sleepy" much of the morning (something cancer kid parents hate to hear), he stayed in the pool for over two hours.

The gang got back to Grandma and Grandpa's quite late so Chris moved right into the shower. It was so late that Dad tried to reduce the length of the phone call to Mom tonight (no success there). It was a nice end to a nice day despite all of the hours spent in the clinics.

Medically, Chris did have any problems save for his "red fingertips." When the dermatologist took a picture of his red fingertips over a blue background, they looked even more red. We'll be applying ointment cream to them until it runs out.

Joke of the day -- How do sick kangaroos get better? They have a hoperation!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

Thursday, July 8, 2004 8:14 PM CDT

Hi Everybuddy!

Chris had another great day filled with plenty of fun, cousins, and adventure. After breakfast and his G-CSF shot, Chris and the gang headed for Norfolk's mini-science/maritime museum, Nauticus. It is a hands-on kind of place with a permanent maritime/naval exhibit area and an area for transient exhibits. For this visit, the transient exhibit was about dinosaurs and fossils. Chris was into everything and had fun at one pavilion in which you could make your own video game. Everyone also took a tour of the deck area of the battleship USS Wisconsin. While in the naval museum, one volunteer dressed in a Civil War vintage naval uniform kept asking visitors if they had any questions (he was good). Chris asked what he knew about Captain John Worden, allegedly an ancestor. He was stymied but did go to the library and within ten minutes had some information to Chris. The volunteer was surprised that a young boy would ask about such a guy.

The next stop after the museum was to the new downtown mall MacArthur Mall. It was very nice. We all had lunch and Chris bought some comic books. That done, we all stopped back at Grandma and Grandpa's for a bit and then went on to Aunt Jackie's. After a short period with the cousins playing a video game, everyone went into the pool. The highlight was a swimming race in which Chris gave a good accounting of himself with his team winning. Aunt Jackie and Cousin Ryan struck back and readily took the underwater swimming race. Everyone had a great time although Dad thinks that several of the cousins were out to drown him.

The gang minus Cousin Ryan headed back to Grandma and Grandpa's for dinner and Chris was pleasantly surprised that they had one of his favorites: ham. Everyone had to tell them about Chris' question to the museum volunteer. After dinner, the gang entertained Grandma and Grandpa by playing a spirited game of tabletop fussball. Chris enjoyed it and was teamed up with Uncle Tom.

Medically, Chris didn't have any problems save for again his "red fingertips." Today, he thought that some skin had peeled off his fingers. Dad will alert the staff tomorrow before we walk into the clinic as they like to know about all weird rashes. He also got quite a bump on the head when he bumped it against a door know while picking up his socks. Ouch!

Joke of the day -- What do you call a dinosaur with no eyes? Doyathinkysaurus! (Do you think he saw us)

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

Wednesday, July 7, 2004 9:08 PM CDT

Hi Everybuddy!

Chris had a really awesome day and got to spend much of his day with his three cousins. Dad woke up Chris so that he could eat breakfast with Cousin Jane while Dad and Uncle Tom dropped off the camper to get a malfunctioning switch replaced. It was a nice way to start the day for him.

After everyone returned and/or got dressed, Chris, Jane, Uncle Tom and Dad drove out to Virginia Beach to pickup some medicine for Chris. Chris used his allowance to buy an African flute. The next stop was for mini-golf and Chris played his best game ever either shooting par or below par for each hole. Chris was in stitches at one hole where Uncle Tom had great difficult staying on the putting green. That one hole will never be the same.

We then all stopped for lunch before heading over to Aunt Jackie's to linkup with Cousins Ryan and Sean and to go swimming. Of course some video game play was involved while the pool was readied. Swimming was going quite well but just as we were about to organize a game of water football, a mini-tropical storm occurred and stopped the swimming. With Cousin Ryan in tow, we headed back to Grandma and Grandpa's for dinner.

Dinner was great and everyone was very hungry. Chris had been playing his two teenage cousins in different video games and was winning. Sometime during dinner, they decided to really get serious with this "preteen."

The after dinner session was fierce and despite their best efforts to cooperate, "Lucky Chris" managed to snake his way through adversity. He almost has them to the point of conceding that he's unstoppable but their going to practice and strategize while he's sleeping (he has an earlier bedtime). All three of them had a great time in essence.

Medically, Chris did have any problems save for his "red fingertips." Today two "red fingertips" faded away and two looked like some skin peeled off of two small spots. Its intriguing. They didn't feel "warm" today though.

Joke of the day (an Uncle Tom personal favorite{?}) -- What did the courteous beaver say to the tree? Nice to gnaw you.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

Tuesday, July 6, 2004 9:09 PM CDT

Hi Everybuddy!

Chris was a disappointed kid today. After a morning with a great start playing card games with Uncle Tom cousins Ryan and Jane, Chris learned that he was wanted at the hospital here for a regular blood test today (Dad had actually been trying to get an appointment for tomorrow morning). Well, since it was just a CBC, Chris and Dad made some changes to today's plans with his cousins so that they'd all get together after the "short" hospital visit.

The people at the hospital were great and really friendly to Chris. The Florida docs had spoken with the Virginia Docs and by the time we got there, Chris was greeted like a long lost patient (he had been there before). On top of that, one of Chris' favorite child life therapists from New York is now working there so it was more like a homecoming. The staff treated Chris well and was very impressed by his "bedside manner." As they have a different lab process here, once they drew blood for his CBC and for a type and cross, the guys had time for a quick lunch at the hospital's cafeteria. Since they drew all of the samples from his finger poke (a first -- for the "red cap" test), Dad had a premonition that he needed platelets. He did as they sunk to 16. The blood test results were: white blood cells rose to 5.2 (normal: 4.0 - 12.0), hemoglobin remained at 11.7 (normal: 11.5 - 14.5), platelets dropped to 16 (normal: 150 - 450), while his ANC rose to 2900 (normal: 1400 - 7400). He was told to hang around for platelets and to continue his G-CSF through Friday (his next visit).

Chris was well taken care of by both his child life therapist, a teenage volunteer (who watched him play video games and cheered for him), and by a newly diagnosed teenager who was funny (he gave her a happy face pin). At the appropriate time, Chris was given his pre-medications of Benedryl and Tylenol and after an hour's wait, started receiving platelets (from a single donor). All went quite well up until five minutes before the end of his infusion and then Chris broke out heavily in hives. It was fantastically itchy and they were numerous and quick to develop (almost as bad as a bad antibody day). They gave him some Benedryl through his mediport and then a steroid. It didn't take effect as fast as Chris would have liked but he did an excellent job in showing restraint and not scratching them. The teenager who has yet to need any blood transfusions was paying close attention to how Chris coped with his situations -- she was impressed. Chris was then put on fluids and eventually all of the meds "made the rounds" so to speak and Chris itching and hives started to subside. After being observed for another hour, they let him go so his simple clinic visit turned into a seven hour adventure. He cracked Dad up in the parking lot when he told him that it was difficult because he also had some hives on his rear end (that he intentionally neglected to tell anyone about). Dad discouraged that in the future. Needless to say he missed out on all of the "cousin stuff" today.

After the clinic, he was hungry so he asked if he could go to McDonalds so we did. It ended up being the one right next to Dad's old college so they drove around a bit and Chris thought that any college with its own monorail system couldn't be all bad. Once home, he was happy to see Jane there and they started to play a video game and then watch the Simpsons. Dad let him stay up late so he could have some play time and Mom called later than normal for his story time. He went to bed upbeat at least. You really have to admire his ability to roll with the punches.

Medically, Chris did have one small bout of diarrhea and some tremendous brush with hives. The medical staff treated him like and old friend and were very responsive to a new patient with problems. He did not have any respiratory difficulty but the decided to issue the steroid to ensure that he didn't develop any respiratory problems and to help reduce the size of the hives. Chris was very impressed and thankful and was happy to give out several happy face pins to the staff. He also has something going on with his fingertips where they looked reddish and sometimes feel "warm" to him. That's a new problem.

Joke of the day -- What do you call two medicine men? Pair-a-medics!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

Monday, July 5, 2004 9:10 PM CDT

Hi Everybuddy!

The best laid plans of mice and men . . . Yesterday's update was supposed to come from Mom currently serving at Fort Stewart, GA but their phone system isn't cooperating. Nonetheless, it was an exciting day for Chris as initially he and Mom and then he and Dad went on a huge "Road Trip!" as Chris is calling this adventure.

We all left Tampa in a convoy heading for Savannah, GA where Mom will be performing her Army duties all next week. Chris rode with Mom so they had some neat things to talk about and Chris filed in the voids by playing GameBoy Advanced games. They did have some excitement watching as a tire fell off of a trailer in front of Dad's car (who was in the lead) and for the "longest" time seemed to be bouncing right at Dad (who avoided it). The two were pulling for him and trying to figure out what to do if it took a weird bounce their way. Somehow the tire bounced harmlessly off the road missing all of the following traffic.

After we stopped for lunch close to the fort, Chris jumped cars to Dad's to continue their road trip to Norfolk, VA. Chris had Genie with him and knew he was soon to see his cousins so it wasn't as "painful" a departure as Mom and Dad thought that it might have been.

After driving for a while, Chris and Dad decided to drive through until they got tired. When they did get tired they'd pull off and rest (it is a camper after all). They made really good time in beautiful conditions (well, except for having to avoid some wild turkeys in South Carolina). In North Carolina their luck changed and they had to travel through heavy rain and then swamp fog. It got tiring and they ended up pulling over and napping twice. Dad thinks that Chris could have stayed awake the whole way through playing games. Both ended up getting about five hours of sleep on and off and got to Grandma and Grandpa's house just as everyone was waking up. Uncle Tom spied the two guys walking Genie in the backyard by the river.

Chris was ever so hopeful that Genie and Casey (a golden retriever) would be friends. Well, they're not friends but not enemies. We'll work on that. Poor Casey did something to one of his toenails where it bleed for a bit and initially we thought that the two might have done something but it appears that Casey had an accident getting into his cage (his refuge from that pesky border collie). Between one trip to the vet's and Uncle Tom applying some of his wrapping skills (maybe from years of being a basketball coach), Casey managed not to injure his paw additionally.

Chris started the morning by playing Uncle Tom in Chinese checkers. He then started to teach Uncle Tom how to play video games.

Aunt Jackie came over and picked up Chris and Jane for some shopping and to go hang out at her place (where Cousin Ryan was waiting). Jane ended up buying a toy blowgun like Chris' (as Uncle Tom later discovered the hard way). It amazes all of us that all of the cousins get along so well (ages: 20, 18, 14, and 10). Chris, Jane, and Ryan always seem to have a lot of fun despite the age differences. When Dad finally joined them, they had already gone swimming and were playing all sort of video games together. After a dinner of Papa John's pizza (Chris lucked into that one), Dad brought all of the cousins back to Grandma and Grandpa's house for a sleepover. Chris unfortunately didn't get to hangout for too long considering the drive to get here.

Chris did get to speak with Mom today and she continued the tradition of reading his night time story (another Hardy Boys; book). Chris filled her in on the details of the journey and more importantly, all of the neat things the cousins are doing.

Medically, Chris did not have any significant problems. His arm that was leaning on the armrest of the car has several bruises on it for some reason. They don't seem to conform with any pattern of the armrest though and Chris doesn't know how they got there. He did have one bout of diarrhea at bedtime.

Joke of the day -- Have you heard the trash joke? It's a load of rubbish!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

Saturday, July 3, 2004 10:07 PM CDT

Hi Everybuddy!

Chris had a great day, one that was reasonably free of side effects. He actually awoke before Dad and Genie went in his room to wake him up; Dad found him playing a video game as he was on the way to Chris' room. Genie seemed a little disappointed, so Chris ended up playing with her and the rope toy.

Not long after breakfast, we went to the movie "Spiderman 2." We met our friend Cate at the movie theater. Dad thought that the movie was a sleeper, but the others seemed to think that it was ok. Chris liked this one better than the original "Spiderman" movie, but thought that there should have been more action. He enjoyed the movie nonetheless. We then thought of a reason to walk the length of the mall: Dad was actually sort of looking for a travel case for one of Chris' video games. Chris found one and we were all pleasantly surprised that it was sold to Chris for a dollar (he got the "bargain-of-the-day-award since it was worth much more than that). After a quick lunch, we all went our separate ways; we returned home and began to pack in earnest for tomorrow's trip (Mom will begin her next active duty stint with the Army Reserve, while it looks like Chris and Dad will be able to travel on to Virginia after all).

We each had a role in packing, with Chris mostly focused on packing games, toys, and movies (his strengths). Dad mostly focused on getting the cars ready, while Mom packed clothes, medicines, documents -- and tomorrow morning, the computer). We're close! There was a break for church tonight, where Chris sat next to his friend Greg. They didn't interact much though since Chris didn't feel so good for a little bit. A trip to the bathroom and a Zofran tablet helped get that under control. For dinner, Dad grilled stuff for an early 4th of July picnic.

Chris spoke with Uncle Tom today. He's looking forward to seeing everyone, and he and Dad put together some of the pieces for the summer Kid's Olympics that we hope will happen in Norfolk.

Medically, Chris did not have any significant problems, other than a bit of nausea this evening (which seems to have been brought on by kool-aid not reacting well in his belly shortly before going to church), but keeps reporting that he's still feeling occasionally tired.

Joke of the day - (thanks Uncle Tom) -- Art Teacher: The picture of the horse is good, but where is the wagon? Pupil: The horse will draw it.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, July 2, 2004 10:17 PM CDT

Hi Everybuddy!

Chris had a clinic sort of day today, particularly since he needed a platelet transfusion. That wasn't much of a surprise, but we were a little surprised by his need to start the G-CSF shots again. The day started with a trip to what sometimes feels like his second home, the Tampa clinic, for a regular blood test. The blood test results were: white blood cells dropped to 1.8 (normal: 4.0 - 12.0), hemoglobin dropped to 11.7 (normal: 11.5 - 14.5), platelets dropped to 18 (normal: 150 - 450), while his ANC dropped to 500 (normal: 1400 - 7400). He was medically permitted to go to the day camp after he received a G-CSF shot from Dad and he was invited back sometime in the afternoon for a platelet transfusion. Chris saw one of his friends, and the two played some cutthroat Uno. The two were sort of amusing and kept the rest of the people in the waiting room smiling.

Drop-off at MOSI day camp was a little more complicated since his classmates were well in session. His instructor got Chris caught up pretty well; Dad told him that at a time to be determined, Chris would get platelets this morning.

After Dad dropped off Chris, he did some errands and was almost downtown to Mom's office when the clinic called and wanted Chris back there in a little over an hour. Dad went to Mom's office for a bit before getting hung up on traffic on the way back to the museum to pick up Chris. It was a challenging ride. Because it was lunchtime, Dad wasn't sure he'd even find Chris around the museum (not knowing where they go for lunch). It worked out just fine though. Despite the hustle, the guys got back to the clinic fifteen minutes late only to learn that Chris' platelets hadn't made it across the bay yet. Whew! The guys waited about twenty minutes before Chris was called to get accessed. Shortly afterwards, the platelets arrived. Chris watched the movie "Spiderman" in order to refresh his memory before seeing "Spiderman 2" tomorrow with Mom and Dad (and maybe a couple of other friends).

After the second clinic visit, Chris went on a special shopping mission, thanks to Grandma and Grandpa before he and Dad went to pick up the camper/van from the service department. Having the van back allows for the possibility of visiting Uncle Tom and Cousin Jane (who recently arrived from France); Dad made sure to have the proper medical orders in hand, just in case they are able to go. Mom also worked with our wonderful medical insurance company to get that piece of the problem squared away. The guys then went home to await Mom's arrival.

Shortly after her arrival, Chris showed her something that he'd made and then everyone went off to pick up the station wagon (Chris and Dad had been driving that to get the camper/van, but obviously Dad couldn't drive both vehicles at the same time) and then to go to dinner. It had been a busy week, so we just wanted to "veg out."

Once home, Chris called Grandma and Grandpa to thank them and were happily surprised to learn that Uncle Tom and Cousin Jane had safely arrived from France already. Chris is very thrilled about the possibility of going up to see them. We kept the call short as we knew that they'd had a long flight to get there.

Medically, Chris did not have any problems but keeps reporting that he's feeling tired. Having said that, he can still act the part of a wild man -- at least in short bursts. We're be recording that in the update if it stays a consistent complaint.

Joke of the day (from Nurse Teri) -- What do you call a strawberry who becomes sad? A blueberry.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, July 1, 2004 9:48 PM CDT

Hi Everybuddy!

It was an interesting day for Chris and something of a repeat of Tuesday. Chris went to the museum's day camp, where he had a lot of fun. Then once more, he spent much of the evening helping Mom move into her new office.

Chris had fun at camp today and they made a "short" movie (about 3 minutes in length) that Dad expects to see at its premiere
tomorrow afternoon. That, of course, depends on whether Chris needs a platelet transfusion. Chris is supposed to receive a CD at the end of the camp tomorrow that will contain all of the movies that he and his peers have made throughout the week.

After a short stop at McDonalds to get Chris a "dunch," the guys headed back downtown for Mom's office. As on Tuesday, Dad had already spent much of the day there helping her office to settle in. Chris was very helpful there. He was the main figure in reassembling the law library, believe it or not. Most of the books are color coded and have volume numbers printed on the bindings, as well as the publication years, so matching the sets was like a puzzle to him. Chris worked very hard moving those heavy books around in order to put them in the right order. He seemed to be full of tremendous energy, as he jumped up (yes, jumped -- not simply "stepped") on chairs in order to reach the higher shelves. When he wasn't working on that project, Chris explored the new office area and found a couple of "secret passageways" (around and behind modular furniture and filing cabinets). We stayed there quite a while tonight, and as we got ready to leave, Chris was found asleep in his new favorite "secret" hiding place between two modular units, hidden from superficial view by two filing cabinets.

Medically, Chris had a great day with no mentionable problems. He was definitely tired at bedtime though.

Joke of the day (from Uncle Tom) -- What is "out of bounds?" An exhausted kangaroo.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, June 30, 2004 9:31 PM CDT

Hi Everybuddy!

Chris had a real surprise this afternoon: Dad secreted him away for a rendezvous with Greg and his family at Busch Gardens. The day started in a more mundane fashion with Chris making his usual trip to the Tampa Clinic for a regular blood test. The blood test results were: white blood cells rose to 2.2 (normal: 4.0 - 12.0), hemoglobin rose to 12.7 (normal: 11.5 - 14.5), platelets dropped to 31 (normal: 150 - 450), while his ANC dropped to 700 (normal: 1400 - 7400). He was medically permitted to go to the day camp, but we're anticipating the need for platelets on Friday.

Today there was not much of a wait in order for Chris to be seen by the medical folks, so he was only able to say hi to his clinic friends. Chris has one nurse in particular with whom he plays "games" when his vital signs are being taken (e.g., he holds his breath). She was training someone today, so Chris extended the new nurse the same "courtesy."

Drop-off at MOSI's day camp went well; Chris and his friend sang their morning song ("She Wears Short Shorts"). Today the students focused on doing different movements with their claymation figures. Chris wasn't able to add any more bloopers to their film today.

When Dad picked Chris up this afternoon, they headed for an unspecified destination that Chris couldn't guess until Dad made one last turn to -- Busch Gardens. What Chris didn't initially know was that they were there to link up with Greg's family. Chris figured it out but while walking to the link up point, he told Dad that he may not be able to stay long. Dad took him to one of the restaurants for a drink and a snack. By the time Greg's family arrived, Chris was ready to go. Chris rode on several spinning rides as well as a roller coaster-like ride. He also attended the show, "The Haunted Lighthouse." For the first time ever, Chris was able to ride in a bumper car by himself! It was a day of surprises and "firsts."

The guys left Greg's family there at Busch Gardens since they wanted to have dinner with Mom, who will soon to leave again for more Army Reserve duty. Upon his arrival home, Chris was surprised to find that he had a new toy to test for Wild Planet toys. This time it is a talking alarm clock.

Medically, Chris had a weird day. He didn't have many substantiated problems, but Chris complained that as of late, he's been so tired that he felt like he might have taken four Benedryls (even he has never taken that many at once!). Coming home from Busch Gardens, Chris complained of heartburn and an upper chest pain concurrently. That's a new complaint from him.

Joke of the day (from Uncle Tom) -- Are you in the top half of your class? No, I'm one of the students who make the top half possible.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, June 29, 2004 9:44 PM CDT

Hi Everybuddy!

It was an interesting day for Chris. He went to the museum's day camp where he had a lot of fun, then spent much of the evening helping Mom move into her new office.

Since Dad had a presentation to make at the school board, the guys left early for camp. Chris was seemed disinterested in things on the way there until he announced that he felt nauseous. Dad immediately reached for a yellow barf bin (you know the type that's standard in most new cars . . . not!) and handed it to Chris. Sadly, Chris put it to good use and before Dad stopped to dump it (Dad was driving at the time), he searched it to see which medicines (that Chris had swallowed not long beforehand) made it into the bin. Fortunately, most of the really needed stuff managed to have already been digested. Chris handled the situation like a pro. As soon as Dad finished cleaning things up in preparation for the next mishap, Chris announced that he was feeling much better. Many of us would have probably been a wreck for a little while after losing the contents of their stomachs. Not Chris -- he just gets on with life.

As Dad went to sign Chris in at the day camp, Chris linked up with his friend Matt. Things looked much better. When Dad picked up Chris this afternoon, things were very good; Chris had a great time, especially since one aspect of the claymation movie that he and his fellow campers are making over which Chris has charge is to compile the "bloopers" which will run concurrent to their credits at the end of the film. Chris is having a good time with that task.

After a short stop to get Chris a "dunch," the guys headed dowtown for Mom's office. Dad had already spent much of the day there, helping her office to settle in. Her peers had moved while Mom was performing her Army duties. There was still so much to do, so all of us pitched in to help. Chris was very helpful. That hadn't been the plan for the evening, but we all had fun pulling it off. Chris wanted to know when "bring your kids to work day" was going to be (it didn't happen on time with the rest of the country due to the individual schedules of all of our kids, but we do hope to get the kids together at the office sometime this summer) -- hmm, maybe after we're all fully moved in. If they come too early, they may actually get put to work. It was all worthwhile to him since Mom agreed to Chris' dinner request -- pizza of course!

Medically, Chris had a tolerable day with two rough spots. He felt nauseous and then vomited once. Late in the afternoon, Chris had some stomach cramps.

Joke of the day (from Uncle Tom) -- What do you get if you cross a hunting dog with a telephone? A golden receiver.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, June 28, 2004 8:17 PM CDT

Hi Everybuddy!

Chris was a happy camper as he reported to another day camp at Tampa's Museum of Science and Industry (MOSI), where he learned that he was in the same class (this time it's "Character Animation") with his new friend and instructor from last week's class. Chris' day started though with the usual trip to the Tampa Clinic for a regular blood test. The blood test results were: white blood cells dropped to 2.0 (normal: 4.0 - 12.0), hemoglobin dropped to 11.4 (normal: 11.5 - 14.5), platelets were 58 (normal: 150 - 450), while his ANC remained at 800 (normal: 1400 - 7400). He was medically permitted to go to the day camp.

Today the clinic hosted a visit from the joint commission that certifies hospitals. Needless to say, things went slow. Chris was able to play quite a few games of desktop football and Uno with his friend, Sammy. A lady from the Children's Cancer Center, Shelly, usually comes every Monday to provide the kids with a themed activity. Chris always jokingly asks her if today is "Muffin Monday." Well, today it was. Unfortunately, things were delayed as the head nurse wanted to make sure that having muffins would be ok. After a bit of a delay, the muffins were cleared for distribution since they were individually wrapped. Due to the delay, Chris missed most of "Muffin Monday," but it was a big hit as Shelly read the children's book, "If You Give a Moose a Muffin," had hand puppets, and several other popular things that Chris missed.

Drop-off at MOSI went well and Chris was excited when he learned that he was in the same class as his friend and last week's instructor. The two boys got together and his friend asked if it was time to sing their daily song, "Who Wears Short-Shorts?" We know Chris must have started that one, but he is too young to remember the Nair commercials from a couple of decades ago.

When Dad picked Chris up this afternoon, they headed right for the airport, arriving just a few minutes before Mom's EARLY (yes, it does happen from time to time) arriving aircraft. Chris had enough time to hide and surprise her though (and almost tackled her). The guys then took Mom out to dinner to her favorite barbecue place, which isn't too far from the airport. Chris fell asleep on the way home.

Once home, he recovered quickly since he was motivated to show Mom the video game that he had made last week. She liked it and was surprised by how much of the game was put together within just one week. The technology level appears to Mom to be like video games developed in the early to mid- 1990s, but she thought that it was pretty neat that 10 year olds could create an entire short game within one week. Since Chris has the developer's software, he wants to add more to his game; it is pretty well developed but not complete, especially because he missed some time due to clinic appointments. Chris was happy that he finally had a night with normal "nighttime stuff" activities. In fact, although he enjoyed the MOSI day camp activities, by bedtime Chris said that he didn't want to return to the class. Mom thinks that that was probably related to end-of-the-day fatigue and the fact that she had just returned from an out-of-town business trip.

Medically, Chris had a nice day again, but did have to deal with some cramps. Since he's had two abdominal surgeries, Dad's going to ask the doctor if these cramps of late might not be from one of them (sometimes late effects show years after the surgery -- like a twisted bowel or something). Although we realize that this is probably chemo effects from the Irinotecan, it doesn't hurt to check out other possibilities.

Joke of the day (from Uncle Tom) -- When you catch your dog eating a dictionary, what should you do? Take the words right out of his mouth.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, June 27, 2004 8:10 PM CDT

Hi Everybuddy!

Chris day started early despite an evening of doing forward rolls down the bed with Greg; after they were supposedly sleeping. Not too long after Chris got going this morning, Greg's Mom called Dad. It seems that Chris wouldn't eat any breakfast and he was just being quiet in their den. He definitely wasn't the Chris she knows. Not too long after that phone call, she called again to relay that Chris was asking for some Zofran for nausea. Dad headed right over there and gave him one. Not even five minutes later, he was acting perky. Soon after, he and Greg went out to play basketball and Greg's Mom told Dad that she didn't get it. Dad just said that sometimes it happens that way. Cancer is definitely weird.

Once home, Chris said that he was hungry but Dad wasn't getting good vibes about cereal of waffles. Dad fixed up some macaroni and cheese, a hot dog, watermelon and some chips and Chris devoured them all. His appetite was back. Once Dad was sure that Chris hadn't caught a bug from yesterday's visitor (well, as sure as you can be in twenty-four hours), the guys left for Les' home. While Les and Dad moved things to their new home, Chris went to see the new movie "Two Brothers" with Les' daughter Marlise. Both of them later told the parents that the movie was very good.

On the way home, Chris asked to stop at a store he's never seen before so the guys did. When they got out of the store, the sky looked ominous (one of Chris' new favorite words). The guys ran into some really sever weather on the way home. The National Weather Service kept interrupting Radio Disney with sever weather warnings. Chris was quite nervous and said that he didn't like the summer thunderstorms. Dad then gave him a little talk about weather, and flying in weather, and reassured him that the weather pattern they were talking about wasn't where the guys were or where they were going and Chris felt much better. Once home, we quickly walked the dog and unloaded the car just before the afternoon heavy rain began. We needed it, too.

This afternoon, all that Chris said that he wanted to do was play a new video game so Dad let him relax after a fulfilled eighteen hours. He had quite the time this weekend. After dinner and "nighttime stuff," Mom called and Chris moved the phone into his room for story time.

Medically, save for the early morning nausea, he had a great day with no additional problems.

Joke of the day (from Uncle Tom) -- What do you call a ghost's mother and father? Transparents!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

Saturday, June 26, 2004 9:28 PM CDT

Hi Everybuddy!

Chris said he had one of his best days ever. Today over thirty scouts, siblings, and their parents descended upon the household and worked on the scouts Sportsman pins. Older siblings were critical as there aren't enough scouts to field the required teams and even with all of the kids we had, some of the Dad's had to take to the field as permanent players during the softball game.

Dad got Chris up early as there still a few details to finalize. Chris vacuumed the house while Dad did the same to the pool. Chris got a reprieve when Greg and his brother (the den chief for the patrol) arrived and from then on it was nothing but fun for Chris. Although a couple of the scouts who were late arrived, everyone hustled to make up time (we knew that the afternoon thunderstorms were going to come).

After the safety brief, the first event was volleyball that Dad ran. The scouts had to know the rules, practice for thirty minutes, and then play a game. It went well but not quite like Dad thought it would as most of the kids had never played (that surprised him). Yet, the kids caught on quickly and the kids dutifully did all the drills that Dad taught them. There was plenty of ice water and for big breaks, juice drinks as it was rather warm. The game was close throughout and was actually better than the drills indicated that it would be and everyone had fun (although Chris seemed less interested in volleyball than softball).

After a long break for drinks and popsicles, the kids went through the same type of routine for softball with the den leader and Greg's Dad overseeing that sport. It was the first real game Chris had been in and he managed to get three hits at four attempts. He wasn't clear on the "running thing" as for some reason he held up on first base after someone got a hit and was eventually forced out on the way to second when he did finally move. The softball game went quite well. The softball game and badminton were actually setup in the neighbor's yard. Not only that, the Dad was a long time youth baseball coach and he provided a great deal of baseball equipment for the scouts to use. Thanks Deb and Mike!

Everyone broke for a lunch of hamburgers, hot dogs, watermelon, chips and brownies. One of the Dads volunteered to grill and the results were excellent. The kids were decidedly hungry but had done a good job drinking water and juices throughout the game play. After lunch, about twenty people left but the rest went swimming after the required wait. When all of the kids were very "prunish" looking, we decided to end it all. They had a great time in the pool. Not too long afterwards, the thunderstorms developed and it poured so things couldn't have been timed better.

What made a special day for Chris even better is that Greg's Dad offered to take him to church tonight and then decided to ask if he could make a sleepover. Chris was quite please when Dad said, "Yes." As far as Chris was concerned, things don't get any better.

Genie was spoiled today. Everyone loved her and made up for the decline in belly rubs since Uncle Brian's departure. She was quite pleased with the leftover hamburger for dinner, too.

Medically things were super although one of the smaller kids that came apparently had a fever so we'll be watching that. Once Dad learned of it, Chris went nowhere near the kid.

Joke of the day (from Uncle Tom) -- What is "out of bounds?" An exhausted kangaroo!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

Friday, June 25, 2004 10:14 PM CDT

Hi Everybuddy!

Chris reports that he had a spectacular day at camp today. The kids got a chance to play the games that all the other kids had developed. He has a disk with them on it, too. Because of him missing some time due to treatment he needs to finish his RPG (role playing game) game but he did manage to finish his arcade game. Chris' day started with a trip to the Tampa Clinic for a regular blood test. The blood test results were: white blood cells rose to 2.2 (normal: 4.0 - 12.0), hemoglobin rose to 12.4 (normal: 11.5 - 14.5), platelets dropped to 28 (normal: 150 - 450), while his ANC remained at 800 (normal: 1400 - 7400). HE was permitted to go back to camp. Although Chris' platelets were above the transfusion point, when the staff remembered that he had a big scouting event tomorrow, they decided to transfuse him so Dad ended up dropping him off at camp late and picking him up early.

While waiting to be called at the clinic, Chris and Dad played several hands of Uno. Normally the first people at clinic, for some reason there were several families who arrived early today si they had plenty of time to play. After finishing at the clinic this morning, Chris was happy that Dad could drop him off at MOSI for another day at camp. When Dad picked up Chris in the afternoon, Chris was really happy although Dad could tell that he would have liked to hang around to play the other kid's compute games. The transfusion went quite well and Chris stirred up a little action when he challenged a nurse to go bungee jumping with him. As she is the same nurse that he joked about being in the dunking machine, she jokingly asked why he was always picking on her. She didn't say no . . . but she didn't say yes.

The guys then had some last minute shopping to do for tomorrow's scouting event. Chris was bummed out as he learned that Dad got to see Greg yesterday when he bumped into his family shopping and also today when Greg and Tommy (his older brother and the patrol's den chief) came over today to help setup the volleyball court and the softball field.

Once home, Chris and Dad finished work on the softball field and then put up the croquet course and horseshoe game. Chris then watched the Simpsons on DVD for a while and then helped Dad make the final batch of brownies and setup the "food line" for tomorrow.

Chris got to speak with Mom twice. Once when we were on the way home from shopping (he told her about the game he designed and the other kid's games) and then later at bedtime. The later discussion was secret but Chris was supposed to read to Mom who was driving back from having dinner with Allie's parents. Chris wanted to make sure that when she got to the hotel, she could get some rest as she has an early start tomorrow. She is really busy during this Army session.

Genie had an exciting day as she spent a lot of time with Dad out in the back setting things up for tomorrow. Her running buddy from next door "Hooch" came out to play with her, too. The softball field is actually on our neighbors property so both sets of neighbors were involved with setting up the fields so the dogs had plenty of time to tire one another out. Thankfully our neighbor has coached youth baseball for a long time so he helped develop a strategy for doing tomorrow's game.

Medically, Chris had a nice day again without diarrhea but not without cramps at night. He finished his last dose of Temodar for this cycle.

Joke of the day (from Uncle Tom) -- Mother: Let me see your report son. Son: Here it is, Mother, but don't show it to Dad. He's been helping me!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, June 24, 2004 9:02 PM CDT

Hi Everybuddy!

It was a bittersweet day for Chris. On the one hand, both Mom and Uncle Brian left. Mom went to Washington for some Army Reserve matters and Uncle Brian is heading to Washington in a tourist-like fashion to see some old friends. On the other hand, Chris had a great day at camp and got to go bungee jumping with Dad.

When Chris awoke, he knew that everyone would be leaving and he handled that pretty well today. After breakfast with everyone, Uncle Brian was the first to depart. Not too long after that, Dad took Chris to camp and while Chris was there, Dad took Mom to the airport.

When Dad picked Chris up, they decided to execute a plan they've had for going bungee jumping outside the museum (they have bungee jumping, a climbing wall, and a water play venue). Its actually not "bungee jumping" but there are bungee cords attached to a safety seat and you jump on a trampoline. You can make quite a jump and you do bungee back down to the trampoline. Chris challenged Dad to a flipping competition. Dad hasn't been on a trampoline since high school but it came back quickly. Once everyone was hoisted up, Dad didn't get much of a view of Chris. Dad managed seven back flips and one front flip. When they got down, Dad asked Chris how many flips he did and he replied meekishly, "None." Well, that's OK as it was very strenuous but Chris did say that it one of the most fun things that he's done and he wants to drag Greg over there sometime soon. Chris was tired and hot after the exercise.

Once home, the guys had high hopes of going swimming but Dad had to cut the grass on the area where we're going to setup a softball field for Saturday's upcoming Webelos sports day. Unfortunately, the lawn mower was very uncooperative (this one hadn't been used in years) and just as Dad finished, the afternoon thunderstorm arrived.

Chris ended up watching Simpsons DVDs all afternoon and playing with Genie. Dad did make him his favorite meal (well, one of his favorites): hot dogs, macaroni and cheese, and cinnamon apples.

Genie had a great day as she spent two hours in the back with Dad but she explored and ran everywhere. She got to do it again after Chris got home and she got a big surprise, her friend "Hooch" from next store was home and the two dogs got to run around (and seriously tire each other out).

Chris did get to speak with Mom on several occasions today as she checked in with us upon her arrival in Washington. She's getting ready for all of her "Army stuff." Tonight, she read to Chris from a Hardy Boys book. It went well until he got some stomach cramps. Fortunately, some Benedryl helped clear them up.

Medically, Chris had a good day up until he got cramps while Mom read to him over the phone. It was sort of like a repeat of the night before.

Joke of the day (from Uncle Tom) -- What would you call a strange egg in a frying-pan? An unidentified frying object!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Mom!

Love,

Chris, Alison and Pat

Wednesday, June 23, 2004 9:56 PM CDT

Hi Everybuddy!

Chris had another great day at MOSI day camp. His computer game is really coming along, he reports. On Friday, the class will receive a CD with all of the games that his whole class has developed throughout the week. Chris' day started with a trip to the Tampa Clinic for a regular blood test. The blood test results were: white blood cells dropped to 1.9 (normal: 4.0 - 12.0), hemoglobin remained at 11.5 (normal: 11.5 - 14.5), platelets were 34 (normal: 150 - 450), while his ANC dropped to 800 (normal: 1400 - 7400). The staff is anticipating that Chris will likely need platelets on Friday and that there may be a possibility that his ANC will be too low for him to continue with day camp this week. We'll see.

While waiting to be called at the clinic, Chris, Dad and Uncle Brian played Uno. Dad was replaced by a little boy until Chris was called in for his finger poke. Dad also got the results of Monday's full panel blood test; Chris liver function factors are starting back down from last week's spike. No one is sure why they jumped as they did, but at least they're on the way back to a "Chris normal" range (which is still higher than the "average" kid).

After finishing at the clinic this morning, Dad and Uncle Brian dropped Chris off at MOSI for another day at camp. When Dad picked up Chris in the afternoon, Chris said that the day was, "Great!" His game is really shaping up and he wants Mom, Dad, and Greg to play it when it's finished. Chris spoke with Grandma and Grandpa today and told them of his gaming adventure. When Uncle Brian got back from his beach day, he and the guys headed for the pool. Chris showed Uncle Brian how to play pool baseball and then Squidditch 2. Towards the end of the Squidditch match, Chris asked Dad to finish the game for him since he was quite tired. This is the second time this week that Chris has fatigued in the pool. Usually Chris is invigorated by swimming. Dad'll talk to the doctor about that.

Most of the rest of the evening, the guys watched the Simpsons on DVD. Uncle Brian got caught up on the Simpsons. Since it was a weird night (Mom and Uncle Brian are leaving in the morning), Chris dined on pizza and got to stay up a little later than normal. He managed to get a call in to Aunt Jackie; she and her family sent Chris some really neat pool toys that will come in pretty handy this weekend when a bunch of Cub Scouts descend upon the house. He, Uncle Brian and Dad tried out the new inflatable jousting sticks she sent -- prima!

Genie had an exciting day as she spent a couple hours outside with Dad while he was working in the back, getting it ready for the Scouts. Dad was quite surprised that Genie's "fear" of the swamp has apparently ended. He saw her in the neighbor's backyard, and the only way to get there was through the swamp (a "conservation area" that is now quite dry -- and has been that way for most of the time we've lived here, thanks to the multiyear drought). She was clever getting over there but needed help getting back. Uncle Brian was on top of her new requirement of almost continuous belly rubs. Chris and Dad gave her a workout in the afternoon by playing keep-a-way and then later she was a participant in a huge dog pile.

Medically, Chris had a nice day again without diarrhea. He seems to be tiring quickly lately. Chris also had an upset stomach at bedtime; was that due to the chemo or the large quantity of pizza that he ate earlier?

Joke of the day (from Uncle Tom) -- Teacher: What is a comet? Pupil: A star with a tail. Teacher: Can you name one? Pupil: Lassie.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, June 22, 2004 9:37 PM CDT

Hi Everybuddy!

Chris had an "awesome" day at the MOSI (Museum of Science and Industry) day camp. This week, its a computer game design introductory class. By Friday, he is expecting to bring home a computer game that he's designing and programming this week. Mom and Dad will test it on our computer after he brings it home. He really likes the class and is heartily confirming what he has been saying for almost a year, that when he grows up, he wants to be a video game designer. Who knows, but he's sure having a good time with it now. Once back from day camp, Chris spent much of his afternoon thinking about what to do for his game, along with watching the movie, "Catch that Kid."

Except for seeing Uncle Brian at breakfast and dinner and thereafter, the two didn't get much time today. Brian explored Florida West Coast beaches today and left home after Chris went to camp, returning just before we all headed out to dinner. Chris had some fun with Uncle Brian at dinner though. They had a peanut eating competition. This particular restaurant (made to look like a saloon) encourages its customers to throw the shells on the floor after eating the peanuts. Chris ate quite a few.

The two of them though didn't even get to go swimming. The guys will have more time together tomorrow. They did have a dog pile later in the evening featuring Genie the Wonder Dog. This time, part of her strategy was to keep Chris off of Mom and Dad's bed (tonight's battlefield). The dog pile was the centerpiece of the evening; everyone played a part in it at one time or another. Genie hustled quite a bit as her goal evidently was to ensure that Chris did not get on the bed. She did quite well, but Chris did get on the bed in spite of her actions. Chris joined Dad in the music room for a while and performed one of his "dance numbers" while Dad was playing the drums. He really should take some dancing lessons; he has some cool moves (maybe he's been watching MTV when Mom or Dad aren't around).

Medically, Chris had a good day. There's not much to report on this subject, except that Mom and Dad almost forgot to give Chris his chemo pills tonight. Not to worry though, he got them and handled it quite well.

Joke of the day (true wisdom from Uncle Tom) -- Why don't grasshoppers go to baseball games? They prefer cricket.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, June 21, 2004 9:33 PM CDT

Hi Everybuddy!

Chris had a real "Uncle Brian" kind of day today: Uncle Brian joined him for breakfast, went to the clinic with him for a finger poke, dropped him off at MOSI (Museum of Science and Industry) camp, accompanied him to a platelet transfusion, went swimming, and then was in a "Class A" dog pile. Chris got worn out, as may have Uncle Brian as well.

The first adventure was Chris' finger poke. For some reason, the clinic was a little slow this morning and Chris was eager to get to MOSI for the first day of a day camp focused on video game design. Having said that, once Chris was called from the waiting room, things went quite well. Uncle Brian watched Chris get a finger poke. Neither Chris nor Uncle Brian got "squeamish." The blood test results were: white blood cells rose to 2.6 (normal: 4.0 - 12.0), hemoglobin rose to 11.5 (normal: 11.5 - 14.5), platelets dropped to 16 (normal: 150 - 450), while his ANC rose to 1300 (normal: 1400 - 7400). Chris was invited back to the clinic for an afternoon platelet transfusion.

While waiting to be called, Chris' little friend Sammy came in with a new (and complicated) card game. The two boys play cards normally while waiting. This time, no one but Sammy had seen this game before. It became apparent that Sammy really didn't understand the rules as well as he thought but Chris played along as he heard the rules, which changed as the game went along. Uncle Brian thought that it was quite funny.

After finishing at the clinic this morning, the next stop was at MOSI to drop Chris off for the day camp. Fortunately, the staff members were very sympathetic to Chris' situation; they got him integrated into things just as soon as Dad and Uncle Brian dropped him off. Dad and Uncle Brian then toured the museum and saw the new Human Genome exhibit. Chris wondered if he'd see his friend Brage from "the old days" of chemo; he remembered that Brage did a lot of "stuff" at the museum. He didn't see Brage today, but he's going to look again tomorrow when he'll spend the full day there. Chris did see his friend Bobby, who was also at MOSI camp this week, although attending a different subject matter than Chris.

Because of the platelet transfusion, Chris couldn't stay for the full class today. When Dad and Uncle Brian arrived to pick him up this afternoon, Chris' class was going on break. Chris was happy to have made a new friend and enjoyed the subject of his class: introduction to video game design. By the end of the week, each student will have designed his own video game and have a copy of it on a CD to take home. Chris liked this theme so much that he had trouble falling asleep tonight; he was concentrating on plot development for his game. Tomorrow, the students will learn about graphics, but at some point Chris needs to have a fully developed plot. He really wants to have a complete game of his own design by the end of the week.

Due to the fact that Chris had to be examined by a doctor, he got hooked up in an examination room. Unlike most days, he ended up having to wait and basically get the whole transfusion done there. Since there is no TV in an exam room, Uncle Brian was exposed to some of the many games that Chris and Dad have invented over all the years of treatment in order to pass the time. Uncle Brian went head-to-head with Chris in a game that the guys call the golf ball drop. Basically, a golf ball is dropped on the floor, but the player tries to catch it at a predetermined number of bounces. It gets difficult at about thirteen bounces.

It was worth the wait. When the doctor came into the exam room, she had a very good outlook based on Chris' scan results. She decided to cut Chris' chemo (Temodar) dose in half this week because she is concerned about his persistent need for platelets. Nonetheless, she decided to continue with the current schedule. She also decided that Chris can wait for his next cycle of Irinotecan until after he returns from Boggy Creek Camp. Dad asked about a sequel to the treatment that Chris is on now. She'll investigate some alternatives, however what he is doing now is still meeting with some success. We'd be remiss if we didn't thank the Blood Czar and the Blood Team for having platelets available for Chris yet again, as they have for over five years. What an amazing crew!

We all left the clinic enroute for home in order to go swimming. Surprisingly, Chris had very low energy in the pool today. He did go "bubble surfing" with Uncle Brian, then basically played "beat-up Uncle Brian" twice. At some point while he and Uncle Brian were in a little inflatable boat, Chris decided that he was just too tired. He got out on his own, which is a rare thing when he is swimming. While Uncle Brian was trying out some SCUBA equipment in the pool, Chris got their next adventure going. Chris introduced Uncle Brian to the video game, "Simpsons' Hit and Run." Uncle Brian mostly watched and provided moral support.

A big discussion through the afternoon was what to do for dinner. Chris was politicking for Papa John's pizza of course and was using his full toolbox of ploys to get Uncle Brian to request that for dinner. In a compromise, we went to "Chris'" Mexican restaurant once Mom arrived home. Once home, Chris introduced Uncle Brian to one of his favorite movies, "What About Bob."

Genie was certainly not neglected today. She has latched on to Uncle Brian as he always seems to be petting her. She also got in a few games of keep-a-way and a big dog pile.

Medically, Chris had a fair day. Diarrhea is still part of his day. The doctor is not alarmed and still attributes it to the Irinotecan.

Joke of the day (true wisdom from Uncle Tom) -- A thief who stole a calendar got twelve months.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, June 20, 2004 9:39 PM CDT

Hi Everybuddy!

Chris had a spectacular day as his friend Greg had returned from vacation and was able to spend much of the afternoon over here playing. This morning, Dad found Chris wandering about looking for Genie (he awoke on his own). After some cereal, Chris tried calling Greg, but had to be content leaving a message for him. Sometime during breakfast, Chris snuck out allegedly to go to the bathroom, but he came back to the kitchen rolling a chair filed with cards and presents for Father's Day. He and Mom had coordinated when to give them to Dad apparently since Mom hadn't left Kentucky yet to come home.

After Chris had a short period of watching the Simpsons and playing a video game, Greg called and said that he could come over. When he arrived, the two boys went through their "ritual." First they play a video game. Sometimes they played head-to-head and sometimes they shared, but they always get along. Next was "torment the dog" (in a friendly sort of way and Genie wouldn't be happy unless it happened). Shortly after that, they went in to the music room, where Chris played drums (standing up as his legs are too short to reach the pedals yet) and Greg strummed the guitar.

The next event was swimming and it was crazy today. The pool has always had a "bubble blower" at the bottom of the shallow end. Today it dawned on Chris that it might be fun to have it going while they were in the pool. They did some neat things like inflate clothes, and try to swim through the "current," but the coolest thing they did was "bubble surfing." They stood on a body board and edged it into the bubble stream and then held on for dear life. It was quite amusing. Dad then hit some balls off of Chris' T-ball batting stand that they either caught as if they were playing baseball or dodged like they were "bad guy" hand grenades. They then had a diving contest and each guy had their own specialties. Chris knows that he'll never intentionally do one of Greg's specialty belly flops (ouch!). The guys dropped Greg off at his home on their way to pick up Mom at the airport. While at Greg's home though, Chris introduced Greg and his parents the sport of cup stacking.

The guys headed to the airport, but only to learn upon arrival that Mom's plane had been delayed. Chris didn't mind since he managed to come out of the deal with a new Garfield book (so that he'd have something to read while waiting). When Mom showed up, Chris was holding up a sign that said, "Becker," just like the drivers do in New York when he went up there for treatment. She liked it, too. On the way home, we met up with Uncle Brian, who happened to arrive for a short visit just after the guys left for the airport. We met at a restaurant, and true to tradition, we took Uncle Brian to the adjacent bookstore (where we frequently go after dinner at that particular restaurant). Chris again wound up with a new Garfield book (thanks to Grannylin and Granddad) and Uncle Brian got an introduction in how to live life according to Bart Simpson.

Chris tried to get in touch with all of the grandparents, but was successful only with Grannylin and Granddad. He answered the phone at home today and for the first time, spoke with a relative in Germany who speaks only German. Chris knows only a very few words. He was able to figure out that the guy on the phone was speaking German, was a relative, and therefore got Dad down from the attic (yes, he was working up there today on Father's Day) to speak with him. Actually, Chris did pretty well handling that one (at least he didn't tell him "wrong number" and hang up on him).

Medically, Chris had a good day and had only one bout of diarrhea, although it was worse than was anticipated for this point in the cycle (a daily event apparently). His energy and appetite are back where they should be. Chris thinks that his bald spots may be from his new diving mask strap. He's probably right about that; he's got two patches behind his ears, and they are rubbed raw. In addition, Chris has fresh petechiae around his neck area, but most of his bruises appear to be in varying stages of resolution.

We hope that all fathers today enjoyed their special day today. We especially want to salute the "Angel Fathers."

Joke of the day (true wisdom from Uncle Tom) -- What's the problem with twin witches? You can never tell which witch is which.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, June 19, 2004 9:35 PM CDT

Hi Everybuddy!

Chris had a nice day even though he wasn't able to get in touch with his friend Greg who should have returned from vacation today. Chris awoke on his own this morning and despite his attempt at stealth, Dad got the jump on him sneaking up on Dad. After a hearty breakfast (for once), the guys got in contact with Cate to plan out an afternoon of a lunch and a movie.

Once that was done, the guys headed for the pool anticipating that the afternoon's thunderstorm would preclude swimming after the movie. It was a wise choice. The guys played a spirited game of Squidditch 2 and Chris is getting proficient in swimming head-to-head with Dad as they scramble to get the snitch. He was so tired after the half hour game that he only did a few dives before getting out of the pool to get ready for lunch.

Lunch was just what the doctor ordered and the guys and Cate ended up at Mel's Hot Dogs for lunch. Chris was in hog heaven and managed to eat "the usual" this time. The next stop was the movie "Dodgeball." Chris loved it but there were a couple of things in there that although not serious, Dad would have reconsidered taking Chris to see. It was a fun movie however and after it was over Cate came up with a good reason to walk Chris the length of the mall. He had a good time window shopping and trying on hats (and doing impromptu skits) at Old Navy. The kid is weird but funny.

After the shopping adventure, Cate dropped the guys off at home and they spent the afternoon maintaining things or watching the Simpsons on DVD or playing a video game (you can guess who did what). Chris had a peculiar taste for dinner. Would you believe macaroni and cheese, bacon, and watermelon? Go figure but he ate his whole meal (and that hasn't happened for a few weeks).

Chris did get to speak with Mom twice today. She called once while we were in the car and the phone was passed around to Chris, Dad and Cate. She had just returned from Uncle Eric's wedding. She also called later in the evening and like last time, Chris ran storytime and read to her and told her about the movie. She'll be home tomorrow. She also told us that Uncle Brian was heading our way in the next few days. Chris liked hearing that! Chris dropped right off to sleep again tonight.

Medically, Chris had a pretty good day and had only one bout of diarrhea. His energy and appetite have improved. Chris is developing two bald spots a little above and behind each ear. We haven't seen his hair fall out that way before.

Joke of the day (true wisdom from Uncle Tom) -- Who always forgets where she puts things? Miss Place.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, June 18, 2004 10:29 PM CDT

Hi Everybuddy!

Today was a bittersweet day for Chris in that he's been told that his scans show improvement (although there is still evidence of disease) but Mom has flown off to Kentucky to attend a brother's wedding. He was pleased that Mom accompanied us to the clinic until he figured out that we were heading to the airport next to drop her off (he was mopping during the ride there). Somehow, we got that attitude turned around and he was cheerful before she left and throughout the remainder of the day.

The goal at the clinic today was to get Chris a blood test, seek out scan results, and get things ready for next week's cycle of chemo using the agent Temodar. The blood test results were: white blood cells rose to 2.4 (normal: 4.0 - 12.0), hemoglobin dropped to 11.2 (normal: 11.5 - 14.5), platelets dropped to 27 (normal: 150 - 450), while his ANC rose to 1000 (normal: 1400 - 7400). Chris didn't see any of his friends but did get to play Mom and Dad in Uno for a few games. We left the clinic with some questions unanswered but they were eventually throughout the remainder of the day.

We all left the clinic enroute to the airport and had time to go through some of the less traveled routes through north Tampa. It was interesting but we cut that short when we realized that Chris was being to feel poorly about Mom leaving. We then worked on distracting Chris and by the time we had parked and gotten into the terminal, he was his normal happy self. We spent about an hour with Mom on the concourse exploring all of the changes since Chris and Dad flew out of there regularly to New York. They haven't done so for over a year now.

After Mom went into the ticketed passenger area, the guys headed out for -- pizza -- for lunch. Chris was famished. They then stopped at a bookstore and computer place to window shop. We then headed over to the Museum of Science and Industry. Chris will be going to two day camps there throughout the next two weeks and Dad was trying to workout a camp/clinic schedule (with no success). While there, Chris and Dad went through one of their exhibits where they teach kids about criminal investigations and crime scenes. Chris solved the mystery (that Hardy Boys book paid off)! On the way out, Chris went up a thirty foot climbing wall. He's tried one before but didn't make it up. He was tired but felt good about making it up to the top. Next week, he will try their bungee jumping activity (uses bungee cords and trampolines).

The guys then went back to the clinic as we learned that the radiologist have made real progress in eliminating their backlog and we actually got the final reports from Chris, CT and MIBG scans. They generally show improvement although there is still evidence of disease and a few confusing descriptions of activity in one report. Dad briefly spoke with the doctor and she was quite happy with the results but was going to sit down with the radiologist next week to clarify some things in her own mind. That works for us. We're still awaiting bone scan, blood and urine results.

After receiving the news, the guys headed home, got Genie excited (after a boring time to herself) and then went swimming for over an hour. The guys invented a new game that needs work called "Pool hockey," one small ball is the "puck" and some Styrofoam "noodles" are the sticks. One on one pool hockey is tough. The guys also played a close game of Squidditch 2. Chris said that if he won, Dad should make macaroni and cheese. He didn't win but Dad made his favorite anyway. Dad let Chris stay up in case Mom called (she did) and to watch the "Rugrats Movie" with deleted scenes. At bedtime, he went to sleep quickly.

Medically, Chris had a fair day. He still has the occasional bouts of diarrhea. He is tiring easily but gets recovers pretty quickly.

Joke of the day (true wisdom from Uncle Tom) -- Who grants the fishes wish? A Fairy Cod Mother

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, June 17, 2004 10:14 PM CDT

Hi Everybuddy!

The tables were turned today as Chris accompanied Dad to a clinic so that Dad could see a doctor. Chris spent the time reading and keeping a four year-old girl occupied by playing hide and seek with her while her mom filled out a ton of paperwork. When they were finished with Dad, the staff at Dad's clinic tried to take him out the back door (it was lunch time)until Dad told him that he had to pick up Chris in the waiting room (they thought it was empty, which says something about how quiet Chris was). True to instructions, Chris was quietly sitting there reading the "Hardy Boys' Detective Handbook," much to the surprise of the staff. The guys then went to McDonalds for a late lunch (Dad is very glad that it serves salads).

Once home, the guys took a break; Chris watched more Simpsons DVD's; no video games day. Chris spends a lot of time playing the games, but also knows when to take a break from them. Today, he read the Hardy Boys book and watched the Simpsons in his down time. He was just resting up before the next activity: two hours of fun in the pool. Fortunately, the weather cooperated and the guys were able to swim. Dad invented a new game that Chris liked. He dispersed five of the "noodles" that we have along the boundary of the pool as hurdles. Then he and Chris competed as to how fast they could make it over all the hurdles and around the pool. It was tough, but Chris did well. Chris then made up two dives and tried them out (they probably won't be around for too long) and practiced his other three dives (displaying improvement). They also played some "Squidditch 2" until Chris said that he was too tired to play. Before he got out of the pool, Dad had Chris swim a few lengths of the pool doing the breast, side, back strokes and the Australian Crawl (or whatever). His form is improving. They also did water "martial arts." Today they upped the difficulty level as they battled above and below the water. Chris demonstrated good water skills and common sense and lasted about ten minutes before tiring.

Not long after getting out of the pool, our friend Les came by for a visit. Although he spent a lot of time talking with Dad, he and Chris managed to get into a spirited "battle" with Chris' karate batons. Sometimes Dad thinks that Chris forgets that even training batons can sting; he and Les go at it with abandon. The guys also made some plans on the next get together soon.

As things turned out, Mom got home before dinner could be prepared, so we went out as we also needed to shop for food. Chris found a copy of "Jughead Magazine," got permission to buy it, but then he put it back when he remembered that he told Dad that he wouldn't ask for anything this week. We tried to convince him that it was still ok, but he wouldn't purchase it. By the time we got home, Chris was a very tired puppy -- even his eyes were a bit red around the edges (some of that could have been in part due to the chlorinated pool). Nonetheless, he was ready for bed. Tonight was a little "cool" dung medicine time as he drank some of the new Coca-Cola "C2." It tastes like classic Coke but a little different, and has less calories, carbohydrates and all. It was good but when you've been in a rut for as long as Chris has, any change is "good."

Medically, Chris still had diarrhea, but not of the "emergency" type. He is wondering when that will end. He is bruising, so he thinks that he'll receive platelets tomorrow after he and Dad drop Mom off at the airport (she's going to Kentucky for a wedding). Along those lines, we'd also like to wish Grannylin and Granddad a very Happy Anniversary!

Joke of the day (true wisdom from Uncle Tom) -- There was a man who entered a local paper's pun contest. He sent in ten different puns, in the hope that at least one of the puns would win. Unfortunately, no pun in ten did. We'd like to thank Uncle Tom for going the extra mile to help make Chris' desire of presenting a joke every day possible.

It is with deep sorrow though that we tell that another of Chris' friends, Becca, a many time antibody "buddy" with Chris in New York, is finally free from pain and the worries of her disease. She was a marvelous girl and a good friend to Chris. They both loved to dance and sing and do "spy stuff" around the Ronald McDonald House. She also had earned a black belt in karate like Chris. Dad is glad that they always kept their sparring friendly. We are sorry to know of yet another wonderful bright young girl has perished; she and Allie were very much alike in many ways. Chris had not seen or spoken with Becca in quite a while, so we have decided not to tell Chris about her passing yet. She fought valiantly to the very end and her Mom said that she passed with a smile. That would be Becca's way.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, June 16, 2004 10:04 PM CDT

Hi Everybuddy!

The day turned out a little different from what Chris and Dad thought it would be. While at the Tampa Clinic, the Nuclear Medicine Department from the hospital called and asked if Chris could come for his scan at 10:30 a.m., instead of the previously scheduled 1:00 p.m. appointment. Chris and Dad both agreed that it would be a good thing, so after the clinic visit, they drove across the bay immediately for Chris' MIBG scan. Before doing that though, Chris was subjected to a blood test at the Tampa clinic. The blood test results were: white blood cells dropped to 1.7 (normal: 4.0 - 12.0), hemoglobin rose to 11.5 (normal: 11.5 - 14.5), platelets dropped to 37 (normal: 150 - 450), while his ANC dropped to 600 (normal: 1400 - 7400). If the ANC doesn't rise on its own by Friday, Chris will probably have to get G-CSF shots over the weekend; he is due to begin a cycle of chemo with Temodar on Monday (by the way, Mom inadvertently referred to Temodar in yesterday's update -- it should have been Irinotecan). While at the clinic, Chris asked to give his blood using a new method: a finger guillotine (it's one of his magic trick gags). Several of the nurses tried it (after cringing, of course). It was a trick he showed people throughout the day. He also beat Dad in the completion of a "best of seven" Uno championship (albeit a very limited championship).

After a nice clinic visit, the guys stopped by a store to get Chris a snack; he is allowed to eat before an MIBG scan. The drive across Tampa Bay was a pretty one today; Chris even looked up from reading his book to watch all the animals he could see on the bay from the bridge.

When they got to Nuclear Medicine, the guys found that another adjustment had been made to Chris schedule; his almost two hour scan was broken into two parts since a little girl needed to be prioritized about midway through Chris' procedure. It actually worked out better for Chris since laying on the scanning table for two hours is difficult. He watched the movie, "Fly Away Home;" it is possible to watch a movie during an MIBG scan, as long as he doesn't move. During scanning, Dad reviewed the screen and thought that there might have been some improvement, but it was hard to tell. There was a different data filter today, so the screen image blurrier than usual; MIBG images are very vague to the untrained eye anyway. Yet, in Dad's unprofessional opinion, Chris' liver only appeared to have one spot. In the past, it had at least two, so that indicates improvement. Having said that though, we never "think" too much until after the radiologist reviews the scans. Chris did an excellent job in remaining still and holding whatever pose he was requested to hold for as long as he was requested to hold it. The technicians said that there has been "marked improvement" (to use medical lingo) in reducing radiology's backlog, so we may actually get test results by Friday. We'll be patient. The results would not immediately influence his treatment on Monday.

After the scan was completed, Chris was hungry but the guys decided to stop by the oncology ward first to say hi to his friends on duty there today (and of course to show them his magic trick). They've been around him for years, including for two transplants, so they were leery and cautious. It was fun. The guys also saw one of Chris' favorite night nurses, Amy. She gave Chris a big hug.

Once clear of the hospital, the guys stopped by McDonalds, then had a picnic on a nearby Coast Guard station. They mostly watched boats move about the bay. Chris likes its exchange (like a department store). Their next stop was to Chris' bookstore, where Dad bought a Hardy Boys Detective Guide for doing so well during his scans. The technicians were impressed (and they see a lot of kids come and go). On the way home, the guys also stopped by what will hopefully be Mom's new Army Reserve Center; they saw that it is very close to being completely built.

Once home, Chris was tired and wanted to either watch TV or go swimming (hmm, interesting options for a tired kid). Unfortunately, the weather did not cooperate with swimming. Chris enjoyed watching more Simpsons DVD's. He and Genie mostly snuggled today instead of wrestling. Genie is very good about being "wild" when Chris is active, but also quiet when Chris is fatigued. Because it was so late, the guys didn't have to wait long before they heard from Mom. Our idea was to go see the new Disney movie, "Around the World in 80 Days." They met Mom at the theater and watched the movie. Despite its potential with a lot of good actors, the movie simply did not live up to expectations. Editing was not good, so the story was very fragmented (and very much unlike Jules Verne's book). Having said that, there were a few good scenes, so all-in-all, it was ok.

Chris was a very tired puppy after the movie. Dad has noticed that on days that they spend a lot of time at the clinic/hospital, Chris (and Dad) seem more tired at night. He didn't even wrestle with Genie this evening. In fact, Chris told Mom at bedtime that his mind can think thoughts but his body just won't go do things sometimes (translation: fatigue).

Medically, Chris had a fair day. He still has the occasional bouts of diarrhea, he's worn out, and the bruises are returning.

Joke of the day (true wisdom from Uncle Tom) -- Why did the cyclops quit his teaching career? Because he only had one pupil.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, June 15, 2004 9:51 PM CDT

Hi Everybuddy!

Chris spent his day at the hospital day; he had his CT scan and an injection of a radioactive isotope (MIBG), used to highlight cancer cells during a scan that Chris will have tomorrow. This morning started reasonably quiet and Chris had no problems. The guys actually left for the hospital early in order to stop by the Children's Cancer Center to drop off a thank-you card from Chris to the Lightning's player Brad Richards. Brad has done a great deal all season for so many of the kids (Chris included). The center was having a lunch for the kids and Brad, but unfortunately it was scheduled for the same time as Chris' scan today.

After dropping off the note, the guys still had some time to kill, so they went to a store that Chris used to like when we first moved to Tampa and were still living in our RV (he was about 4 years old at the time). Amazingly, although the store has been reorganized over the past 6 years, Chris correctly remembered where things had been when he was four. He also had a bout of diarrhea at that time (and even remembered where the restroom was). Chris picked up "The Simpsons: Season Four" DVD's for which he's been saving (with help from "Aunt" Cathy). A happy, laughing kid is a healthy kid.

Still having time, the guys also stopped by the newly renovated Sunken Gardens of St. Petersburg. It was very nice but a bit pricey. Chris and Dad were disappointed to learn that the Children's Museum (also in the same building) was an additional cost. Chris enjoyed working through the "jungle" but was getting very sweaty and concerned about his mediport dressing.

The guys finally made it to the hospital and soon started passing out brownies to staff members of the clinic, oncology ward, nuclear medicine, his teacher, and the CT scanner crew. Chris made sure to let the dietitian know that the brownies were made with "healthful" dark chocolate. Everyone expressed concern about eating fattening brownies even as they ate theirs with a smile. Two of the CT technicians were pregnant and they (and on behalf of the babies) thanked Chris.

Not everything was rosey today though. Chris had to drink three doses of contrast (used to enhance the CT scan imaging). Right after the second dose, Chris received his MIBG injection (tough in its own right, without "mixing" it with contrast). Despite the technician's efforts, Chris just couldn't handle it and vomited. He felt better after that, and as soon as it was over acted as if nothing had happened.

The CT scan went quite well but for having to do the difficult head scan twice. During this aspect of the scan, Chris has to hang his head backwards for about ten minutes (he normally hates doing that part). There were no problems today doing it, however. Actually, he fell fast sleep and slept through the in-test contrast infusion (which has often made him vomit in the past). Chris slept so soundly, that he didn't realize that he'd done the head part twice. They were loath to awaken him after the scan.

Just as soon as Chris' mediport was de-accessed and he was released, the guys went to Pizza Hut for a late lunch. Chris hadn't eaten anything since early morning and was starving. They then headed right home. Chris' major recreation this afternoon was watching his new Simpsons DVD's. He and Genie had several wrestling matches during the afternoon and the championship match right after dinner. Chris was quite tired when it was time to go to bed (ok, Genie was, too).

Medically, it was not quite as good of a day as it was yesterday. Chris had to quickly move to a restroom once, and had contended with two bouts of diarrhea today. Since today is the 11th day past the end of the Temodar chemo cycle, Chris has broken his previous nine day rule concerning adverse effects.

Chris is staying abreast of developments concerning his Aunt Rhonda. She is in the hospital and he is concerned for her and Uncle Jonathan. Chris has actually never met her, but knows that she is his aunt.

Joke of the day (true wisdom from Uncle Tom, for Revolutionary War enthusiasts) -- Did you hear that NASA recently put a bunch of cows into low earth orbit? They called it the herd shot round the world.

We would like to thank everyone over the course of years who have cared enough to check in on Chris by visiting his website (over 76,000 people). When Dad told Chris that so many people have visited, he was flabbergasted. Thanks for visiting and saying "Hi!"

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, June 14, 2004 9:17 PM CDT

Hi Everybuddy!

Chris' day started off differently when Genie laid down beside him and rested her head on his. The morning went well without any side effects problems. The guys' first stop was the Tampa Clinic for the usual blood test. The blood test results were: white blood cells were 2.1 (normal: 4.0 - 12.0), hemoglobin dropped to 10.4 (normal: 11.5 - 14.5), platelets were 58 (normal: 150 - 450), while his ANC dropped to 900 (normal: 1400 - 7400). Chris' mediport was accessed for tomorrow's CT scan.

Chris had some fun in the clinic as he got to play Uno with Sam, then later played Connect Four with a girl's older brother (who was Chris' age). He also cracked up the nurses by hiding "under" his rather large T-shirt, acting like a rock, near a trashcan (that was the same color as his shirt). They have learned to expect the unexpected from Chris. Dad worked on Chris' chemo schedule for the rest of summer vacation, wanting to ensure that Chris wasn't going to Boggy Creek Camp during a "side-effects" period.

After a nice clinic visit, the guys went to the store for some shopping chores. They then stopped by McDonalds and got their lunch for a "picnic." Chris watched the Disney movie, "Parent Trap." Chris spent most of the afternoon watching TV, playing games, or playing with Genie. Swimming was out today as his mediport was accessed. He was able to speak with Grandma and Grandpa but Dad didn't get to listen in. He came off the phone pretty happy though.

Medically, Chris had a good day and only had to search for a bathroom once. He is dreading having to drink the contrast for tomorrow's CT scan though.

Joke of the day (true wisdom from Uncle Tom) -- Two Eskimos sitting in a kayak were chilly, but when they lit a fire in the craft it sank - proving once and for all that you can't have your kayak and heat it, too.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, June 13, 2004 8:48 PM CDT

Hi Everybuddy!

Chris had a quiet but nice day, even though he did not get to go swimming (he and Dad tried to beat the afternoon thunderstorms in a race to the pool but they failed). His day started fairly early; Dad found him hanging around in the den, waiting for Mom and Dad to wake up. After a breakfast of waffles and sausage, he headed off to church. There, he was in a good mood, but a couple of times, he suddenly felt a little warm and dizzy. Both times, it passed fairly quickly.

After Mass, Mom and Chris enjoyed lunch at what Chris calls "the salad store." He didn't mind going there because it's close to the comic book/trading card store. Sadly for him, the store did not have the card pack that he wanted. That meant that he didn't get anything "in exchange for" eating healthy food. You'll be happy to know that he survived.

Once home, Chris goofed off for a little while before he and Dad left to see the movie "Garfield." Mom couldn't go because had some business to which she had to attend. Both of the guys were much more impressed with the movie than they thought they would be. It was really quite funny and the cat did seem, well, like Garfield. The dog is a real dancer. After the movie, the guys went on a hike through the mall. Again, they went to the farthest points. Chris picked out a computer game card that he wanted to buy. It was supposed to be either $3.99 or fifty cents (depending on which sign you read). Chris was very pleased to learn at the register that it was sold to him for a penny. Chris' comment to Dad, "It just goes to show you the value of a penny!" After another quick stop for some home-office supplies, the guys headed home, where they met up with Mom.

Most of the rest of the afternoon was spent playing games, doing dog piles, and watching "The Simpsons" on DVD. Chris also practiced with his nerf dart blowgun (doesn't everyone have one?) and is getting quite good. He managed to shoot Mom while both he and she were moving. Sometime during the afternoon, Chris told Dad that he was tired and could sleep. Having said that, he didn't take a nap and had the energy of a mad man. We're not sure what he meant by that one.

Medically, Chris had one bout of diarrhea and took an Imodium. He had no stomach cramps or nausea, but did have those warm, lightheaded feelings a couple of times. True to form, he seems to be getting back to normal within nine days after receiving Irinotecan. Sadly, some of his hair (just behind his right ear, about the size of a quarter) is falling out again. He wasn't too happy about learning of that, but hasn't dwelled on it as one might expect. He was disappointed, though. So far, the rest of his hair is still there and is about as long (longest strands are about a half inch in length) as it has been in quite a while.

We definitely want to wish Uncle Alex a happy birthday!

Joke of the day (thanks Uncle Tom) -- What bee can never be understood? A mumble-bee.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, June 12, 2004 9:53 PM CDT

Hi Everybuddy!

Chris had an unusual start to his morning: this time it was Mom and Genie on hand to meet an already awake Chris and to make breakfast for him. Dad had already left for the doctor's office to learn that yesterday he probably had had a close encounter with a passing kidney stone (ouch!). Chris' cranberry extract is now looking appealing to Dad too. Fortunately, Dad's appointment didn't take long, especially compared to yesterday's seven hour fiasco at the hospital since Mom had Army Reserve drill today. Soon after Dad arrived home, she took off to meet with her soldiers.

Soon after her departure, the guys let Genie run around in the backyard, then left for the drugstore to pick up some medicine for Dad. The pharmacist "just knew" it was for Chris, but he was a little surprised since now Chris and Dad are taking some of the same meds. The pharmacist suggested that it was about time that Dad got a taste of Chris' medicine. Hmm . . . After that, the guys headed over to a place to have a light lunch, shop and get some repair material for Chris' Squidditch goal (for the pool).

When Mom arrived home this evening, she found both Dad and Chris in the pool (after this afternoon's thunderstorm). She refereed the end of a Squidditch Two match, during which Chris came from behind to win. The idea was to be the first contestant to grab a floating little yellow ball (a/k/a: golden snitch). Dad often gets to the ball first, but "misses" the ball and splashes it in such a way that the guys end up swimming around the pool (and over each other) to grab the "golden snitch." It turns out being quite a workout for Chris physically. He's become quite a confident swimmer, keeping his head even when being "dunked" in the ensuing scuffles. He's developing really good "water sense." After the Squidditch game, Chris was in a one-man diving show, with Mom and Dad acting as judges. He did five repetitions each of cannonballs, can openers, and a dive that he calls "the Buddha" (his best dive). He has greatly improved, but still sort of wild. He has a lot of fun and always wants to know his "score."

While Dad barbecued dinner, Chris spoke with Grannylin and Granddad for a while, then finished watching the movie, "Close Encounters of a Third Kind," which he began last night.

Medically, Chris had a much better day with only a few cramps and little diarrhea. He becoming optimistic about this cycle's side-effects coming to an end (no pun intended).

Joke of the day (thanks Uncle Tom) -- What's mad, has six legs and lives on the moon? A lunar-tick.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, June 11, 2004 10:20 PM CDT

Hi Everybuddy!

Chris' day was rather routine in some ways, but not entirely. He left with Dad to go to his usual Friday morning clinic visit. There, he was subjected to a finger poke. The blood test results were: white blood cells rose dramatically (thanks no doubt to Monday's G-CSF shot) from 1.6 to 4.9 (normal: 4.0 - 12.0), hemoglobin rose from 10.5 to 12.2 (normal: 11.5 - 14.5), platelets dropped from 49 to 23 (normal: 150 - 450), while his ANC rose from 600 to 2600 (normal: 1400 - 7400). Because the platelet level had dropped, he was invited to return for a transfusion at 2 p.m.

After being released from the clinic, the guys returned home. Chris pretty much occupied his time with a video game. Mom was at home today, so she joined him shortly before former President Reagan's state funeral began. Although Chris continued to play his game (with the sound muted) throughout the funeral, Mom intentionally had the telecast on since she believed it was important that he learn a little bit about President Reagan (Chris was born in 1994, so he completely missed his era) and a little bit about funerals, especially state funerals. Despite all of the death that has surrounded Chris through his young friends, he has never attended a funeral and really knows nothing about what happens.

As the funeral actually started, Chris began to pay more attention to the funeral than to his game. He especially listened to on of the anecdotes shared during the eulogies: at one point during his presidency, Reagan received a letter from a boy who wrote to him, asking for federal funds for the cleanup efforts needed for his room. Apparently, President Reagan wrote back to the boy that the government did not have enough money for that kind of a project. However, Reagan believed that the boy's mother was probably right in declaring his room a "national disaster area," and he "authorized" the boy to initiate a volunteer program to address the matter. Later, Chris even joined in reciting the Lord's Prayer, along with the others in attendance at the funeral.

Eventually, it was time for him to return to the clinic for the platelet transfusion. Dad was set to take him there, as usual. However, at about 1:30 p.m., Dad was suddenly seized with severe pain. Fortunately, Mom was at home at the time. She drove Dad to the hospital that is located closest to Chris' clinic. Chris and Mom escorted Dad into the emergency room. After ensuring that he was situated, Mom took Chris about 1 1/2 miles away to his clinic for his transfusion.

She and Dad talked by cell phone a little while later. The pain dulled significantly just as suddenly as it had arrived. Nonetheless, because no one knows for sure just what it was or what caused it, Dad was to remain there for tests. As it turned out, Dad completed the insurance in-processing phase, but after 7 hours, he had never progressed out of the emergency room waiting room. Dad was not happy because it did not appear to be busy and from his vantage point, he only saw a few ambulances arrive. By 9 p.m., he called Mom and asked for a ride home -- without ever having been seen by anyone at that particular hospital. (Tomorrow, he will follow up at another facility.)

Meanwhile, Chris' transfusion went well. He got one tiny hive on his belly, but it went away without incident. Chris passed the time by watching "The Tuxedo," and playing "Connect Four" with Mom. After the transfusion, it is customary that he remain in the clinic for at least 30 minutes to make sure that no post-transfusion issues develop. Because Chris was the only patient in there at the time, he pretty much had the run of the place. One nurse gave him a syringe, told him to fill it with water, then sneak up on another nurse and spray her with it. Chris only too happily complied with that request, and was rewarded with her squeal. She got even though: after waiting a few minutes (in hopes that he'd forget about that prank), she came back with a large bin with water (it only contained about 10 mm of water, but she acted like it was nearly full) and dumped it on him. He loved it! Eventually everyone decided that perhaps it would not be a good idea if these particular pranks escalated, so Chris was asked to run errands. He delivered 3 packages from the Hematology/Oncology Department to the front Reception Area. The Receptionist thanked Chris and told him that he should tell his nurses that they should pay him for his services. He ran back to his nurses and repeated the comment. They told him to tell the Receptionist that they benefited from the packages, so they should pay him. And so he ran back and forth several times; the ultimate decision was that his "pay" would "come off" of his clinic bills. Either Chris was satisfied with that answer, or he was just getting tired of running back and forth. By then, it was time to leave.

Mom and Chris returned to Dad at the other hospital. Of course, he was still in the waiting room. Because one never knows what kind of diseases may be brought into an emergency room environment, Mom and Chris really had no choice but to leave Dad there. They returned home. Chris passed his time by doing some Internet research on a trading card game that he has never played before but in which he is interested. He also started watching "Close Encounters of the Third Kind." He did not finish that one, but intends to do so tomorrow.

Medically, Chris had a much better day. He still needed a platelet transfusion, and he had a couple of cramps and a little diarrhea, it was all much less severe than in recent days. He was generally happy, but tired by the end of the day. Because he had seen how much pain Dad had suffered for about an hour, Chris was frightened for him as Dad was left at the emergency room. Chris asked whether he'd ever see Dad again, and questions like that. Mom tried to comfort him as much as she could, but at that time, we really had no information. She played on his hospital expertise and told him that by the time Chris' transfusion would be completed, Dad would probably only be beginning his testing (little did she know how off she was on the timing), and that if a CT scan was needed, Dad might have to wait even longer since he'd need time for food to digest and to drink the contrast, etc. Thankfully, Mom and Dad talked a little later. That's when Dad said that his pain had significantly dulled. The phone was passed to Chris, who was much relieved and went back to his normal cheerful self (as later evident by his escapades in the clinic).

Joke of the day (true wisdom from Uncle Tom) -- To write with a broken pencil is pointless.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, June 10, 2004 9:57 PM CDT

Hi Everybuddy!

It was an early morning start for Chris since he had an injection for his bone scan at the hospital across the bay at 9 a.m. Between the distance and the rush hour traffic, one just can't count on things going too smoothly. Yet, it was not unlike a normal school day. Chris' problem is that he knows that he's supposed to be on summer vacation, yet so far almost every day has begun with some sort of medical stuff. Having said that, Chris thinks that going to the hospital is like going "home," even more so than school. It's very familiar and comfortable for him.

The guys arrived at the hospital at just about the right time. Dad was very pleasantly surprised to learn that pre-registration process worked this time; he and Chris were able to move right up to the nuclear medicine department. (They also noticed that most of the first floor of the hospital has been significantly renovated.) First, Chris' mediport had to be injected with radioactive material about three hours prior to his bone scan; it went quickly. They congratulated the chief technician there, who had been selected as Employee of the Month. Afterwards, they were permitted to go down to MRI holding area, where a long-term Chris fan de-accessed his mediport. He was also offered a CT scan today, but that would have involved drinking contrast (a poor tasting substance that helps the scanner identify internal things). Chris thanked the staff, but said that he'd rather wait until his regularly scheduled appointment next Tuesday since he is still a little "queasy" from last week's chemotherapy.

The guys then had a few hours to kill before the actual bone scan. Their first stop was to Chris' hospital teacher's room (she wasn't in) and then onto the oncology ward. A number of the nurses on the day shift have been promoted or otherwise transferred to other jobs (it has been 5 years since Chris first got started on this journey) but a few of his very favorite ones were there today. They all noticed that Chris had grown quite a bit. His teacher walked in during the visit, so she and Chris started catching up with one another. He tried to "tell" her a story using his cat's cradle string, but it kept getting caught up at one particular point. They had a good laugh over that though.

The guys then moved across the street to the St. Pete clinic. Some of the old day shift nurses from the ward now work there (including two more of Chris' favorites). He was something of a celebrity today, so of course being serious was not in the equation. Chris is allowed to eat before a bone scan, so they headed out for lunch and a quick stop at one of Chris' favorite bookstores. Surprisingly though, he came out without a book; he was specifically looking for two, but they had neither.

Eventually they had to return to the hospital for the bone scan. The scan went quite well; Chris was able to watch the movie, "Jumanji," during the scanning process. The bone scan is one of Chris' shorter scans. In Dad layman's eyes, things looked usual during the scan, although Chris' cheek bones appeared asymmetrical (not to the technician though). Dad could tell that there is a lot of bone growth in progress; both normal growth as well as cancer are detectable by the bone scan. Normal growth should generally be seen at the ends of the bones, especially the long bones of the arms and legs. We have learned over the years though that we need to wait for the professional (radiologist) to read the scan before we get excited (either positively or negatively).

Afterwards, the guys headed for home. Their goal: to go swimming before the typical summer afternoon thunderstorm arrived (Tampa isn't called the lightning capital of North America for nothing). They were successful and were able to spend about two hours swimming. Dad surprised Chris and broke out his scuba equipment. For the first time in a while (unlike other previous occasions), Chris followed along underwater, breathing off the alternate mouthpiece. He said that he liked having his own tanks more. After that adventure, the guys played their usual pool games. After swimming, Chris basically had enough time to play a video game, eat a snack, and watch "The Simpsons" before Mom called as she left her office later than usual.

Medically, Chris' general condition improved, but he required a Zofran and Benedryl rescue at night for his upset stomach/nausea problem. Although he still has diarrhea, it seems to be improving a little bit.

Joke of the day (a true Chris story) -- On the way to the car in order to go get lunch, Chris told Dad that he probably end up as a street artist standing behind a hat, performing string tricks (like a cat's cradle). He then said that he probably wouldn't try to tell a story with the string (like he tried to do so upstairs with his teacher) as he'd probably end up -- "tongue tied." Actually, he knows quite a few neat tricks with his string.

One of Chris' friends whom he met in New York, Becca, has taken a turn for the worse. The two were often placed in the same room during antibody treatments, then they would hang out at the Ronald McDonald House. She was always funny and is also a black belt in Tae Kwon Do. She and her family could really use your special thoughts and prayers.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, June 9, 2004 9:57 PM CDT

Hi Everybuddy!

Chris had an exciting day. After his usual clinic stuff, he was able to see Tampa's celebratory parade for the Lightning's Stanley Cup win. This morning's medical stuff was calm compared to previous days; he made it to the clinic without incident. At the clinic, Dad dropped off Chris' urine sample (the first task in this, his next quarterly testing cycle). Chris' mediport was accessed next and blood samples were drawn for a full panel (liver function test) and his routine blood test. The blood test results were: white blood cells dropped to 1.6 (normal: 4.0 - 12.0), hemoglobin dropped to 10.5 (normal: 11.5 - 14.5), platelets were 49 (normal: 150 - 450), while his ANC dropped to 600 (normal: 1400 - 7400). The ANC was not what we were wanting to hear since Chris wanted to see the Lightning's parade. The doctor was very sympathetic to that and told Dad to go home, give Chris a one time dose of G-CSF, then go to the parade. While at the clinic, Chris also played a game of checkers with one of his friends.

After being released from the clinic, the guys went home, walked the dog, got Chris' shot out of the way, then took off for downtown. They parked about a half a mile from the parade route. By the time Chris got to where he and Dad were going to watch the parade, his mediport dressing had started to come undone (that's a problem because of the infection risk). Dad always carries a backpack around that contains all sorts of medical supplies. It wasn't long before he and Chris got the mediport site all taped up again. Chris puts up with a lot. The parade was small (compared with the Superbowl parade a couple of years ago), but it was nice. There were a few
fire trucks, along with one band and a couple of Gasparilla floats scattered amongst all of the convertibles carrying the players. Chris quipped that the fire trucks were probably there to ensure that no "flames" were left around (alluding to the Stanley Cup opponents: the Calgary Flames).

After the parade, all of Tampa was welcomed into the Forum for a small ceremony. It was very nice, but unfortunately for Chris and his hearing loss, it was really loud in there due to the great deal of cheering. The guys left shortly after the Stanley Cup itself arrived. Chris had seen it earlier in the motorcade when it passed about twenty feet in front of him. Mom later told Chris about one of the Canadians who participates on the Neuroblastoma LISTSERV, who ask the Floridian participants to make sure that the Cup receives generous doses of SPF 45 sun screen since it's not accustomed to so much sun and warmth. Chris thought that was funny. It got quite a "tan" during the parade!

Chris and Dad debated about whether they should walk over to Mom's office, which was located only about six blocks away where they watched the parade. But Chris was wilting (his hemoglobin hasn't been "normal" in months) and his energy level just wasn't there. They decided instead to grab a late lunch and headed over to Mel's Hot Dogs. Mel was working there today so Chris showed Mel his new cup stacking skills. The hand-eye coordination involved was a bit too much for Mel, who hadn't seen it before. Chris ordered the new "Chris special:" two hot dogs: no condiments and no buns. He likes them that way, it meets the latest food fad ("low carbs"), and it saves Mel the price of two buns!

Once home, the guys walked Genie and then powered down for the day. Chris watched some TV, played a video game and practiced cup stacking. He couldn't swim due to his mediport being accessed. Neither of them wanted to chance the dressing coming off, so they didn't even ride their bikes. When Mom got home, Chris conned her into going to the "macaroni restaurant." We had a pretty good server and she was duly rewarded with a happy face pin. She was quite happy with it and said, "Oh, so this is where all of these happy face pins come from!" Chris is obviously a regular.

Medically, Chris had a better day but not without troubles. Fortunately, there always seemed to be a bathroom around whenever he needed one. This morning wasn't too bad, but the excitement and stress of the day caught up with him at night. We have quite a collection of ugly yellow "barf bins" around the house, just in case.

Joke of the day (thanks Uncle Tom) -- What is the difference between the Sun and a loaf of bread? - One rises from the East and the other from yeast.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, June 8, 2004 9:39 PM CDT

Hi Everybuddy!

It was a very quiet day for Chris and the guys stayed at home all day. He awoke later this morning than usual with tummy trouble. He resolved that without medication and moved on to breakfast, at which he again just picked. He played a few video games and hung around with his dog until lunch time. He did quite well in terms of eating at lunch though. After the requisite wait time, the guys then headed to the pool.

The first thing that Chris noticed about swimming today was that Dad had him wear long pants and a long sleeve shirt into the pool. That was different. After swimming around a bit, Chris believed that he could still swim while fully clothed. The next task was to take off the pants, tie off the ends of each leg, zip the pants back up, then inflate them with air. The guys then secured their new "floats" around their waists with their belts. Chris thought that this was awesome and actually useful. When Greg gets back, he wants to show Greg how to do it, too. Chris then learned how to inflate his shirt. They learned however that Chris' long pants, which had the zippers on the legs so he can convert them into shorts, leak in the vicinity of the leg zippers. The guys then moved on to some of their more traditional pool games. They got out just moments before the thunder and lightning of this summer afternoon's thunderstorm rolled in.

Speaking of lightning, Dad told Chris as soon as he woke up this morning about Tampa Bay's own Lightning having won the Stanley Cup last night. Chris is a fan of Brad Richards; they have met several times. We learned from a friend in attendance that at last night's pre-game video show, there were video cameos about the individual hockey players and what they do when they're not on the ice. One of those video cameos showed Brad and Chris together (amongst others). We believe that that particular film clip was probably shot last December, when Chris, like his peers from the oncology clinic, had been
"adopted" by one of the team members for a really nice Christmas party. That party was attended by virtually all of the team members and their families;
they seemed like they were one big family, and each one "adopted" a young cancer patient for the party. Chris' sponsor was expected to have attended that party, but could not due to a concussion. So, Brad Richards and his wife, as well as Chris Dingman, came over and spent that afternoon with Chris (Brad's "adopted" patient could not attend the party due to cancer-related illness).

Chris also spoke with Grandma and Grandpa. They had arranged for him to get his stackable cups, so he called to thank them. He has had about four practice sessions today with the cups so he told them that he was making progress. Just before lying down for the night, Chris ran through his stackable cup routine for Mom three times. The difference from earlier practices: he did these in the dark. His secret: he ordered glow-in-the-dark cups.

Medically, Chris had a better day, although still not without stomach cramps and diarrhea. In fact by bedtime, Chris' stomach really started cramping bad enough that he was doubled over in the bathroom for about 40 minutes. Although his eyes did not release tears, Chris moaned several times as he dealt with the cramps and diarrhea. He said that he was afraid to move because even small movements caused pain. At one point, he also thought that he was going to vomit at the same time. Fortunately, Zofran works fast and prevented that as it quickly settled his then-growing nausea. Chris is very eager to get all this cramping behind him again.

Joke of the day (thanks Uncle Tom) -- A boy entered the Ice Cream Palace and asked, "What kinds of ice cream do you have?" "Vanilla, chocolate, strawberry," the counter man wheezed as he spoke, patted his chest and seemed unable to continue. "Do you have laryngitis?" the boy asked sympathetically. "Nope," the man whispered, "just vanilla, chocolate and strawberry." Happy ice cream day! (get it -- I scream day)

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, June 7, 2004 10:29 PM CDT

Hi Everybuddy!

Today was a relatively quiet day for Chris, with another long clinic day due to his need for a platelet boost. After a rocky morning start, things calmed down a bit for Chris. Other than some diarrhea, he made it to the clinic without incident. At the clinic, Chris' upcoming scan schedule (which starts on Thursday) was confirmed and blood was drawn for the routine test. The blood test results were: white blood cells dropped to 2.0 (normal: 4.0 - 12.0), hemoglobin remained at 11.2 (normal: 11.5 - 14.5), platelets dropped to 23 (normal: 150 - 450), while his ANC remained at 900 (normal: 1400 - 7400). Considering that he just finished a cycle of Irinotecan, those counts weren't too bad. The guys were told to return at 2 p.m. for the platelet transfusion.

The clinic was relatively quiet today, but Chris saw one friend. The two played a game of checkers before getting called away for their respective testing. After Chris got his test results, he told Dad that he was hungry and wanted some cini-minis from Burger King. He wanted an old-fashioned camper "picnic." After a brief stop to pick up a movie, Chris enjoyed his first real breakfast and watched the movie, "Dumb and Dumberer." It is amazing that Chris actually put on about a quarter of a kilogram (roughly a half pound) at this morning's weigh-in. After the picnic, the guys went home and took Genie for a walk. Chris then went into the video game/watch TV mode. He was a little tired for some reason (wonder why??), so the guys decided to not go swimming before the transfusion.

The platelet transfusion went well and without incident. Chris watched the movie, "Baby's Day Out," which generated a lot of curiosity since it is a funny movie. Afterwards,
the guys headed home to wait for Mom to return from work. There, Chris found that a box had arrived; it contained the stacking cups for which he has been (somewhat) patiently waiting. He spent most of the evening practicing his cup stacking (for those who don't know, cup stacking is a relatively new indoor sport involving speed and hand-eye coordination). To Dad, they looked like "normal" plastic cups. However, after watching an international cup stacking competition on the DVD that came with the cups, he learned that the cups may designed a bit differently than most cups. Because Chris felt somewhat fatigued, we stayed home to watch the final game of the Stanley Cup. We are very proud to announce that the home team won its first NHL championship against very worthy opponents from Calgary. We are particularly proud of the really nice guys who make up the Tampa Bay Lightning hockey team, who are such wonderful supporters of children who are seriously ill with cancer.

Medically, Chris had a respectable day but not without a few speed bumps. He got up three times from dinner tonight due to stomach cramps. The same was true last night, and in fact he was up twice already tonight. Even though Chris was allowed to stay up late for the whole hockey game, he asked to go to bed at about the usual time. He instinctively seems to know that he needs his rest. Chris has told both Mom and Dad from time to time that dealing with chemotherapy is getting tough. No doubt, Chris has his moments of fatigue and pain, but for the most part, it's difficult to tell that by watching him. The 7 - 10 days after Irinotecan has historically been pretty rough on him, and Chris is in the middle of the hard part of the chemo cycle now.

Joke of the day (thanks Uncle Tom) -- What did the dentist give to the marching band? A tuba toothpaste.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, June 6, 2004 10:49 PM CDT

Hi Everybuddy!

Chris enjoyed his day, right from the moment that Dad woke him up and told him that the Tampa Bay Lightning had won game six of the Stanley Cup series. Chris has been to a couple games, compliments of one of its players who often reserved a private suite for kids who have cancer. He and his teammates are great guys who are not caught up in their own stardom. Chris also cracked up this morning because it looked as if Genie was really paying attention to Dad as he told Chris about the game (she saw it on TV last night . . . ).

Probably because he took his medicine a little earlier than usual this morning, Chris was able to enjoy most of Mass this morning (his stomach was cramping at the beginning, so he sat through the first third though). By the end, he felt well enough to dance a bit to the final hymn. Afterwards, they headed right home to pick up Dad so that they could get to their next stop at the Tampa Clinic. It had been turned into a carnival site for a few hours today as a remote location of the All Childrens Hospital Annual Telethon. There were all sorts of real race cars on display and "Ted" the search and rescue dog outside, many games, face painting, and refreshments on the inside, and many of his friends whom he hasn't seen in a while in attendance. Chris visited with Christina and Ashley, two of his favorites who have often come down to his room at the hospital and played games. Chris' face was painted with a happy face of course (and everyone who saw him said, "of course") and a lightning bolt on his forehead (it doubled as both a "Harry Potter" lightning bolt and a Tampa Bay Lightning bolt). We didn't see the nurse on whom the guys had played the dunking booth prank; they hope that they didn't scare her away. (Of course, there was no such dunking booth.) Chris enjoyed himself. Because most of the stations were run by clinic staff members, he was able to see them doing things and dressed differently than usually. Ashley gave Chris a Harry Potter toy, and Chris reciprocated by giving her a boomerang. Both toys were prizes won at the carnival games.

Mom really liked the "Hula Race," which Chris did twice. The idea was to run about 50 feet down the hallway, don a very bright flower shirt, a plastic grass hula skirt and sunglasses, do a quick hula dance, take it all off and run back up the hallway to the finish line. The first time, Chris went up against an adult volunteer (there just didn't happen to be any other kids interested in that activity at that time), who of course was going to let the kid win. When Chris was down at the other end, he flung the shirt over his shoulder, wrapped the skirt around his arm (but did properly wear the sunglasses), did his dance, then came back. It was cheating of course (both he and adult knew that Chris was "supposed" to win), but it was funny. As Chris was about to leave, another young boy came over to do the Hula race. Chris volunteered to do it again. This time, he "stumbled" on the way down the hall, then "fumbled" with putting the hula clothes on, and "somehow" did not come back to the finish line until after the younger boy had won.

Even though there was food available at the clinic, Chris' stomach wasn't up to it. The running around caused some cramping. Shortly after we left though, he felt better (it really does happen that way), although he struggled with some "itchy hands." It really bothered him, but once it was over, it was over for the day. Based on where we were at the time, we went to a nearby favorite: Mel's Hot Dogs. As usual, the staff said hi. One of them showed Chris where they had put a sign that he'd brought to Mel earlier that says "Hot Dogs: you'll relish the taste." Unfortunately, after his first hot dog, Chris' stomach problem flared up so he didn't eat his usual second one.

After lunch, Mom came up with the idea to stop by another nearby site just across the fence from Mel's: Busch Gardens. The idea was to keep Chris' spirits up as well as his physical strength by walking him around. Chris felt good enough to go, but he only lasted about an hour and a half before his tummy flared up yet again. We spent our time walking around in the wildlife habitat areas (as opposed to the amusement rides), focusing mostly on the "Africa" animal section. There, Chris went on a kid's walking safari; Busch Gardens provided a special map, and Chris had to look for bronze plaques that guided him through an adventure. One of our favorite areas is the Hippo area. There is a huge swimming hole set up for the hippos. One side of it is glass. Thus we could see literally thousands of fish as well as hippos on land and in the water at what appears to be a natural looking water hole.

Chris was worn out after the short visit to Busch Gardens, so we headed for home. He spent the rest of his time watching TV, playing a video game and playing a board game with Mom (a different Harry Potter board game than he and Dad had played yesterday). He briefly said hello to Grannylin and Granddad, but unfortunately at that time, his stomach was cramping again, so his conversation was cut short. This evening, he decided to watch, "The League of Extraordinary Gentlemen." For some reason, he decided to talk about all of the "unrealistic " aspects of the movie. He's turning into a real critic. (Hmm, this is from a kid who likes Harry Potter.) Right at bedtime, he beat on Dad's drumset for a couple of minutes, saying that he felt "groove" at that moment. Both Mom and Dad were a little taken aback at how well he kept rhythm for that short time frame; it definitely did not sound like a young boy who, without any particular training, was just beating on the drums. This could be the beginning of a new summer project . . . We'll see.

Chris watched a little of the D-Day ceremonies and understands (as much as a 10 year old can) of what they were about. He also has some idea of why President Reagan was so important, even though he's too young to really know what the Cold War was. (This made both Mom and Dad feel their age a bit -- has that much time really passed already??)

Medically, other than the stomach cramps and diarrhea (which seemed to be getting progressively worse as the evening wore on), Chris had a pretty good day. His "itchy fingers" episode lasted about 10 minutes, but then it ended for the day.

Joke of the day -- Teacher - "I'd like you to be very quiet today, boys and girls. I've got a dreadful headache." "Excuse me," said Alec, "why don't you do what mum does when she has a headache?" Teacher, "What's that?" "She sends us out to play."

One final note for those who are able to watch the "Oprah" show tomorrow (Monday, June 7, 2004), it has been reported that towards the end of that show there will be a feature on an 8 year old girl named Alex, who also suffers from neuroblastoma and is trying to raise research money through a project called "Alex's Lemonade Stand." The segment was filmed a couple of months ago; Alex is very sick right now and could use any thoughts and prayers you can send her way. You can also check out her webpage, www.alexslemonade.com

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, June 5, 2004 10:32 PM CDT

Hi Everybuddy!

Chris had a nice day with surprisingly few medical problems. The day started out with Genie making a perfect landing on Chris' bed on top of Chris. It didn't hurt him and he had a good laugh. Considering it's the day after chemotherapy ended, that wasn't bad at all. After a quick breakfast, we headed over to the grand opening of the local Boy Scout council headquarters. The council has moved into a much better building with plenty of space. Upon arrival, we went on a guided tour of the headquarters. When that ended, Chris picked out his new scout uniform for next year. His patrol is changing over into the brown and green uniforms of the Boy Scouts (an option for Webelos scouts). Mom finally met some of the scout store employees who have taken care of Chris for a while. Despite being busy, they took out time to say hi to Chris. We then went back to the central hall, where scout displays had been set up. Chris was impressed by the "monkey bridge" display, as well as the Venture Scout display for scouts 14 through 21. Venture scouts can be male or female and they do some very exciting activities. Chris was a little grossed out by the first aid exhibit, which focused on outdoor injuries (despite all that he's been through, he does not like thinking about or seeing blood). Chris also met someone from his patrol there and they both hung around together for a bit.

After the scout adventure, we headed over to the movie theater, where we met up with our friend, Cate, and go watch "Harry Potter and the Prisoner of Azkaban." We all thought that it was an excellent movie, even though it did not follow the book as closely as the first two movies. Afterwards we went to a nearby mall, where we were able to get Chris to walk from one end of the mall to the other. Chris purchased a new kazoo today (the other one broke) and a pet rock that he first named "Bob," then changed it to "Rocky." Chris was just really curious about what people saw in pet rocks back in the 1970s. Of course, he taught "Bob" lots of the neat tricks that a pet rock can do (with the benefit of gravity): sit, stay, roll over, etc. At one point, Genie tried to bite the rock, to which Chris pirated a line from the movie, "Stewart Little," "We don't eat family members."

Chris got his wish for dinner: Papa John's pizza, after having won a bet with Dad yesterday. He went to bed wondering whether the Tampa Bay Lightning would do well during this 6th game of the Stanley Cup. At this moment, it's getting ready to into the second overtime, so we're still waiting. Chris was also aware that former President Reagan passed away today, although he doesn't have any recollection of him since Chris was born well after his presidency.

Medically, other than some stomach cramps and some diarrhea, Chris had a better day. We're keeping our fingers crossed. Although he didn't eat much during the day, he had a hearty meal of pizza.

Joke of the day -- Son: Dad, the dentist wasn't painless like he said he would be. Dad: Did he hurt you, then? Son: No, but he did yell when I bit his finger.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, June 4, 2004 10:03 PM CDT

Hi Everybuddy!

Today was Chris' last chemo day for this cycle. It was something of a repeat of yesterday, with few problems during the infusion but some vomiting after all said and done. Because Chris didn't mention feeling nauseated when he went to the bathroom at the clinic, Dad didn't go with him. When he returned from the bathroom, Chris mentioned that he'd been sick; he had tears in both eyes. It must have been a rough time; Dad has only seen that happen a very few times in all these years. We decided that the oral Zofran worked better than the IV version and that during the next of Irinotecan, we'll give Chris a Benedryl before the chemo actually gets started instead of waiting to give it to him when he feels that he needs it (by then, it's too late).

Although a little belated, blood was drawn for a regular blood test. Those results were: white blood cells rose to 2.1 (normal: 4.0 - 12.0), hemoglobin rose to 11.2 (normal: 11.5 - 14.5), platelets dropped to 41 (normal: 150 - 450), while his ANC dropped to 900 (normal: 1400 - 7400). Of course after four days of a compressed (due to the Memorial Day holiday) five-day chemo cycle, everyone expected that his results would show such improvement -- not!

The clinic had standing room only. One small boy was moved into a treatment room for his infusion. Chris was there with another boy about his age, a younger boy, and a girl about his age with whom he sometimes plays Uno. Chris watched "Harry Potter and the Chamber of Secrets." The guys managed to speak with a few of the families and eventually the head nurse (who was in the clinic for a bit, even though she's on vacation) about the "dunking caper." The nurse has been confronted with so much hearsay information about her being in a dunking booth on Sunday that she's just going to wait and see if it's for real. Chris even brought in a beach towel today for her to borrow; she requested that he bring back in on Sunday for the carnival itself. There has been so much enthusiasm for the dunking booth that it is officially being considered for next year's carnival line-up.

As soon as the guys were released from the clinic, they decided to head over to the mall, where they originally thought that they'd see the new Harry Potter movie with Mom and Cate tomorrow. As luck would have it though, a show was just getting ready to start. They decided to go in and watch it today. Chris has lost weight and wasn't willing to eat anything. But he ended up consuming most of "Dad's" popcorn. Both guys really liked the movie, but were somewhat disappointed since it was a bit different from the book in several instances. It kept the spirit of the book though and was quite exciting. Chris is eager to see it again with Mom and Cate tomorrow. After the movie, Dad came up with some lame excuse to walk Chris all the way to the other end of the mall. As it turned out, Chris noticed that Old Navy had its annual flag shirts for sale. Chris has been collecting them, so he got one for 2004.

After the walkabout, the guys went home. After a brief period of pool maintenance, the guys spent over an hour swimming around in the pool. Chris bought a flat Styrofoam "noodle" the other day and today was his first chance to try it out (his mediport been accessed for chemo this week, so he couldn't go swimming). He now has a new subsurface "surfboard." The guys also invented another game for the pool using balls. It was so complicated neither of them think that they can remember the rules long enough to even show it to Mom and Cate tomorrow.

Medically, Chris had a rough time, but it still doesn't seem as bad as it had been during previous cycles. We'll see how things go; there is usually a window of about nine days immediately after the chemotherapy during which Chris tends to have trouble. Dad was very upset when he saw Chris with the remains of tears in his eyes. The kid has gone through so much and there is likely to be much more treatment in his future. Even during dinner tonight, Chris had to make a bathroom run twice due to stomach cramps. He handles things quietly and with a rare degree of decorum. Both of us just stand in awe at how well he handles all of this and maintains such a good outlook with a sense of humor. Looking at how well Chris handles life in general, it's hard to believe that his body has been a battle ground for half of his life. Whenever either one of us wonders how long we can keep going on like this, we just look at Chris, and have to shrug it off. We just have to keep on going (and struggle to keep pace) with Chris.

Joke of the day -- Dad: Why is your January report card so bad? Son: Well, you know how it is. Things are always marked down after Christmas.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, June 3, 2004 8:36 PM CDT

Hi Everybuddy!

Today's chemo went a little better than during the previous days. Chris had some stomach cramps, for which Dad gave him some Benedryl but he didn't have any vomiting. The guys continued working their prank about one of the nurses being in a dunking booth. Today Chris presented her a pair of swimming goggles. Between what Chris and some of her coworkers have hinted at, combined with some comments made from some other patients, the nurse is beginning to wonder if she might not really end up getting dunked. Chris even drew her a picture of her underwater after being dunked. The clinic was practically empty. Chris got his chemo with one other boy who also has also been getting chemo all week. Chris finished watching the Disney movie, "Far Away Places" and then moved on to watch "Cats and Dogs."

As soon as the guys were released from the clinic, they headed to the store to complete a chore. The guys then headed back to Chris' school. Chris and Dad met with the principal about the volunteer program. Chris, who wasn't really part of the meeting, fell asleep on the principal's couch. She rightly guessed that it was a chemo week for him. By the time the meeting ended,
Chris was fully awake, and he asked to go to McDonalds for lunch. Dad was glad to go since Chris has been dropping weight.

Once home, Chris pretty much hung out, watched TV, played with the dog, and played a video game for a little while. He is bored as swimming is a big aspect of how the guys break up the day. He got one break today that cheered him up: a call from Grandma and Grandpa.

Medically, Chris' diarrhea and vomiting have slacked off considerably. He had a bit of nausea and some stomach cramps from time-to-time. He is going to get a blood test tomorrow to address the petechiae on his upper eyebrows.

Joke of the day -- What's the difference between eating an elephant and eating peanut butter? Elephants don't stick to the roof of your mouth.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, June 2, 2004 9:35 PM CDT

Hi Everybuddy!

Chris' chemo day seemed pretty good until he was disconnected from the infusion. He then went to the bathroom and ended up vomiting. He didn't want to eat anything for about two more hours. He has already lost a half of a kilogram. Chris also said that maybe he shouldn't have breakfast before going to clinic. Dad got him to rethink that since Chris doesn't seem to want to eat anything immediately after chemo, and he'd really get hungry and lose more weight. Tomorrow Chris is going to switch from waffles and bacon back to cereal to see if that helps. Dad's not sure which one comes back up easier, but that is a factor.

The clinic was really packed today. Chris was getting his infusion with two other boys. For some reason, none of them ever talk to each other much. Chris continued to watch the Disney movie, "Far Away Places." He was impressed with the kids in that movie. Continuing on with his prank, Chris finally spoke with his favorite nurse, who returned to work today. He wanted to hear her confirm the "rumor" that she is going to be in the dunking booth (there really isn't one) at this weekend's All Childrens Hospital telethon carnival. She didn't buy the story (she knows Chris), but Chris mentioned that he was going to spend his whole allowance trying to dunk her. We think that she might have started to wonder. All of the rest of the staff told Chris that they'd definitely go along with his prank. The child life therapist is going to tell the nurses that she volunteered to be in the booth, but since she is in charge of the carnival, the director wouldn't let her do it. Since this particular nurse was on vacation, everyone unanimously voted her to "sit" in the mythical booth. Chris also bought a cheap pair of swimming goggles that he is going to give her tomorrow (to protect her eyes during the "dunk," don't you see?).

As soon as the guys were released from the clinic, they shopped around, mostly to kill some time to see if Chris would feel better soon. They didn't have much luck with that. Eventually, they made it home, where he eventually ate a lunch of hot dog, chips, cashews, and grapes. Most of the afternoon was quiet; Chris spent watching TV, playing video games, or taking a break with Dad and playing keep-away with Genie. She did a great job today. Both Chris and Dad were wistfully looking at the pool all afternoon.

Mom brought in pizza for Chris (Mom and Dad intended to eat leftovers). At about the time she was due home, we had a big power failure at home. It eventually was restored, but the pizza definitely came in handy. Chris liked the idea of eating at home by the light of a camp lantern. He liked it better when the electricity (and TV) came back on though. We're watching the first two Harry Potter movies now in preparation for the third movie's release this weekend.

Medically, Chris has the full suite of Irinotecan side-effect problems. They seem to be more manageable than last cycle but the cycle is yet young. He's definitely quieter right now, staying close to home. He even has petechiae on his upper eyebrows, so let's see what the platelet numbers are tomorrow.

Joke of the day -- Did you hear the story about the germ? Never mind. I don't want it spread all over.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, June 1, 2004 9:36 PM CDT

Hi Everybuddy!

Today, Chris started another week of the "hard chemo." His day started as his faithful border collie friend jumped on his bed and landed on his rear end. That got him going! Today Chris had a waffle and his new favorite breakfast food: bacon. He asked for the same thing tomorrow but with more bacon. Is this Atkins? Chris' long clinic day started off a little rocky because just as soon as Chris got comfortable in the infusion chair (under the beginning effects of Benedryl), he accidentally knocked his bottle of Dr. Pepper to the floor. Fortunately, the lid was tightly shut. Unfortunately, Chris decided to open the bottle right away. Dad knows that Chris knows better than to do that, so Dad was a bit put off (as he is the one who gets to clean up the mess). It took a while, but Chris survived it all without too big of a mess.

Blood for a regular blood test and (Dad thinks) a full panel test (primarily to see how well Chris' liver is working) was drawn from Chris. His regular blood test results today were: white blood cells dropped to 2.0 (normal: 4.0 - 12.0), hemoglobin dropped to 10.8 (normal: 11.5 - 14.5), platelets were 61 (probably due to Friday's transfusion; normal: 150 - 450), while his ANC dropped to 1000 (normal: 1400 - 7400). Of course Dad asked if anyone could explain all of the declines, and of course no one really could. Chris was permitted to begin this cycle of Irinotecan.

Chris was there with another boy about his age but the two don't talk with each other much. Chris watched a John Denver/Muppet movie, then a movie about a boy and a girl in South Africa. He'll finish that one tomorrow. After he got out of his Dr. Pepper-soaked shirt, Chris put on his new All Children's Hospital Telethon t-shirt, which Dad bought for him. This is his fifth such shirt; this year's telethon will be this coming weekend. Chris' infusion went well, and Chris came up with a new idea about how he should get the drug Zofran (an anti-nausea drug). He wanted to take it orally instead of through his IV; the IV version of the drug has been making him -- nauseous (of all things). The staff decided to give it a try, and it did seem to work well today. Chris also came up with a neat idea for the clinic's upcoming telethon carnival: he wants to see his favorite nurse in a dunking booth. He said that he'd spend his allowance on the chance to dunk her. The event organizer was tempted but it's pretty late in the game to add anything to what has been scheduled. Besides, this particular nurse coincidentally (or is it?) is on vacation.

As soon as the guys were released from the clinic, they headed home. Enroute, Chris called Greg to see if he could come over (Greg leaves for two weeks at Yellowstone National Park tomorrow). Fortunately, having a place to put Greg for a few hours while his family packed worked out well, so Greg spent about five hours playing with Chris this afternoon. As usual, they had a good time although there was no swimming today since Chris' mediport is accessed this week.

Medically, Chris is back to getting diarrhea from the Irinotecan, along with some stomach cramps. We marvel at his ability to repeatedly put up with all of this and just drive on. He is sophisticated enough to know that it's the chemo that's causing it all. He asked for some Zofran at bedtime, when he also mentioned that he felt warm (but not feverish). For a change, he was only talking about the air circulation in his room, which Mom fixed for him.

Joke of the day -- How do hens encourage their hockey teams? They egg them on.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, May 31, 2004 9:17 PM CDT

Hi Everybuddy!

Chris' day was pretty cool. After sleeping in late and eating breakfast, he called his friend Greg to work out plans for the day, It wasn't long before Mom and Dad dropped him off there (Chris was happy to avoid grocery shopping with his parents). Chris had a great time at Greg's home, where the boys did their usual mix. Chris and Greg went swimming, but for some reason, Chris got very tired after only about a half hour in the pool. Greg's Mom almost called us because she'd never seen him lose energy so quickly. She didn't though because the boys moved into the house and played more video games. Greg was very good about pacing himself with Chris' needs.

Not too long before it was time to pick up Chris, our friend Cate came over for a visit. Soon all of the girls (Mom, Cate, and Genie) left to go pick up Chris from Greg's home. On the way back, Chris performed one of his duties: dropping off the recyclable grocery bags. As soon as Chris was home, everyone suited up and headed for our pool. Chris was in the pool for over an hour and was pure energy. Mom even came in for her first swim of the season. There was a lot of activity in the pool, but mostly the girls relaxed somehow avoiding most of Chris and Dad's usual mischief. The guys showed the girls their new game using the pitching net and also the "grate" game (Dad guards the two bottom grates in the pool and Chris has to touch them). Chris is turning into a rough and tumble swimmer and is becoming quite comfortable underwater.

Medically, Chris needed some rolaids after dinner; actually, it really wasn't due to Dad's cooking - honest. He also has had some diarrhea for almost a full day, but that may be due to him taking the antibiotic Vantin prior to this next cycle of chemo with Irinotecan. Chris also mentioned that his sleep was somewhat disturbed as a result of the short cartoon that preceded the movie, "Raising Helen" yesterday. That cartoon contained some pretty dark psychological humor considering that the actual film tried to appeal to preteens and older. In any event, Chris woke up at some point last night as a result of that short cartoon, but was able to get back to sleep by himself.

Joke of the day -- Optician: "Have your eyes ever been checked?" Patient: "No, they've always been green."

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, May 30, 2004 9:18 PM CDT

Hi Everybuddy!

Like most Sundays, Chris enjoyed a nice and relatively quiet day. He woke up for breakfast before heading off to church. Mom and Chris returned home for lunch, then the three of us went to go see the new film, "Raising Helen." We liked it. Later, Chris goofed around in the pool with Dad and played a video game.

Medically, Chris was in pretty good shape. He dealt with just a bit of diarrhea and awoke with a little congestion. Other than that, he felt fine. His legs appear to be much improved, although the bruises are still there.

Joke of the day -- How much dirt is there in a hole exactly one foot deep and one foot across? None. A hole is empty.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, May 29, 2004 10:02 PM CDT

Hi Everybuddy!

Chris had a really nice day. He spent most of the day hosting a visit from his friend Greg. The guys started out with the usual video game action, with Greg giving Chris some insights into one particular game. When lunchtime came around, Mom took the two surprised boys off to Chuck E. Cheese's. The two are really good about sharing both pizza and tokens. They are saving all of their redemption tickets in order to eventually get a digital camera, probably to support their "movie project."

Once they got home and waited the required amount of time, the boys went swimming. Actually, there wasn't a great deal of swimming going on but there was a lot of movement and horse play. The two had a great time. They also loved getting sprayed with the hose as Dad added a little water to fill the pool to make up for ordinary evaporation. After nearly two hours in the pool, the two waterlogged boys changed into dry clothes and went back to playing video games for a bit. Not ones to stay inside for too long, the boys then went on a "spy mission" until Greg's Dad arrived to take him home.

Not long after Greg's departure, Mom and Dad had some shopping tasks to accomplish at the mall, so Chris got a chance to go exploring. While shopping around, Chris procured a new kazoo. When we sat down to eat at one of the restaurants, Chris broke out his kazoo and went wild. He wasn't loud or anything, but he was funny between humming a song and dancing around on the booth's seat. Tonight we wanted to get home early enough to be able to watch Tampa's hockey team play for the Stanley Cup. Chris has met all their players at one time or another, and they're really nice guys. Chris handed Mom and Dad a Tampa Lightning T-shirt to wear during the game as soon as we got home.

Medically, Chris had a little congestion in the morning. His legs still look rather dismal (although somewhat improved in that the bruises are turning green now) despite yesterday's platelet transfusion. It makes us feel a little sad to continually having to see such visual reminders that all is not well with Chris, even from the simplest bump. It does help us keep focused on fighting cancer though. In keeping with his usual style, Chris doesn't pay it much attention.

Joke of the day -- (thanks Uncle Tom) -- What gives milk and has only one horn? A milk truck.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, May 28, 2004 9:39 PM CDT

Hi Everybuddy!

Chris had another long clinic day. As the terrible condition of his legs foretold, Chris needed platelets. Those in the know at the clinic pretty much decided that as soon as they saw his legs. Chris' blood test results today were: white blood cells rose to 3.8 (normal: 4.0 - 12.0), hemoglobin rose to 11.3 (normal: 11.5 - 14.5), platelets dropped to 20 (normal: 150 - 450), while his ANC rose to 2300 (normal: 1400 - 7400). A platelet transfusion was ordered. So Chris' assumption was correct: he'd spend his first full day of summer vacation at the clinic. Chris also remains lined up to start Irinotecan on Tuesday, blood counts permitting of course.

As soon as the guys found out what time they needed to be back at the clinic for the transfusion, Chris and Dad (believe it or not) headed back to school, where the two of them helped to clean up some chalk art off the sidewalk and then helped Chris' teacher "take down" her classroom. They also returned some unused equipment that has probably been there for years. Chris' teacher was quite thankful as Chris was quite helpful.

After a strenuous morning of packing and cleaning, the guys headed for Mel's Hot Dogs for an old-time picnic (well, old-time as in during the transplant days). The guys got their dogs, then went out to the camper and watched Disney's "Treasure Planet." Chris said that he missed the "picnic days."

The afternoon clinic visit was a hoot. First, the head nurse was getting ready to hang Chris' bag of platelets for the transfusion but, unbeknownst to anyone, was diverted by her boss. Soon several nurses were looking for her/them because platelets have a very specific shelf life. Some of us patients were sort of laughing: the thought of this fine nurse walking out of the clinic heading home unknowingly with a bag of platelets and long IV tubing dragging behind her was too funny. She had things in fine order as soon as her little meeting was over. The transfusion went well and without incident. Chris had two buddies there. One was a little girl (5) who frequently receives her treatment at about the same time as Chris. They kid each other. The other patient was a 16 year old girl, who was there keeping the five year-old company. Throughout the past year, the sixteen year-old has "adopted" the younger girl as a little sister. It is an unusually sweet thing to see and the older girl takes good care of her "little sister." Dad was glad to hear that the older girl will be at Boggy Creek Camp at the same time that Chris is scheduled to be there this summer.

After the transfusion, a tired Chris wanted to get home. He watched some TV and rolled around on those great big balls (which had caused his legs to get all bruised up yesterday). Dad was about to say something until Chris reminded him that he had just received platelets. Chris also received phone calls from a school friend and from Greg. Chris and Greg conspired about some way of getting Greg out of his "clean your room" detail tomorrow. We'll see how it works tomorrow. Mom had suggested that Chris go keep Greg company as Greg cleaned his room, then Greg could keep Chris company as they worked on Chris' room later, but Chris was very cool to that idea.

Chris and Dad went swimming for over an hour. They invented two new games. In one game, they had to tread water in the deep part of the pool and throw a ball at Chris' pitching net (bounces the ball back at you). They scored points by catching their own balls as they bounced back at the pool. Chris did surprisingly well. They also did some swimming racing. Chris is still in pretty good shape (considering . . .).

Medically, Chris had some congestion. He also has some nasty looking legs from where he bumped the corner of two walls while trying to balance on a ball (how else would you want him to do it).

Please visit Chris' webpage. There are finally some new pictures of "SCUBA diver Chris" and "sk8trboy" there.

Joke of the day -- (thanks Uncle Tom) -- What is a skeletons favorite drink? Milk - it's so good for the bones.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, May 27, 2004 10:08 PM CDT

Hi Everybuddy!

Well, school is out! Chris and Dad spent most of the day together as Dad ran the "festivities" aspect of Chris' last day of school party. The kids had volleyball, badminton, croquet (a surprising favorite), horseshoes, hopscotch, Chinese jump rope, big balls to kick around and a multitude of lesser games. Chris' teacher thought that there was ample opportunity for chaos, but it was seemingly what the students needed. Chris also got his report card (6 "A's" and 2 "B's"); we honestly don't know how he does so well, given his clinic schedule (he was tardy 37 times this quarter alone). The guys hung around to help clean up the classroom area.

After all of that, Chris just wanted to head home. He spent most of the day playing with Genie, rolling just above the floor on some rather large balls that we have, talking to his friend Greg on the phone, and looking for stacking cups on the Internet. He also had a nice conversation with Grandma and Grandpa, who congratulated him for being promoted to the fifth grade, getting good grades, and somehow convincing the school's leadership that he was well-behaved (kidding). Chris was quite happy when he heard that Uncle Tom and Cousin Jane are planning to visit from France this summer.

Tonight was the final official Cub Scout meeting of the school year. Chris' patrol, however, has plans to meet occasionally throughout the summer. For the first time, the guys from Chris' patrol all spontaneously decided to sit together (as opposed to the usual small groups of boys). They had a good time, which drew some adverse attention at times since they were a little noisy. Yet, it is times like that which help build a team. Among other things, Chris was awarded his Geologist pin. He told Dad over a year ago that he wanted to earn all twenty Webelos pins; we think that he'll do just that. By the time bedtime rolled around, Chris was a very tired kid.

Medically, Chris only asked for Benedryl in the morning. During one of his "rides" on the ball, he fell off and somehow scratched his leg royally (the bruise is about 4 - 5 inches long and in bright multi-colors -- very painful looking). We just know that he's going to get platelets tomorrow. It was a nothing kind of fall and he didn't even whimper, but the bruise/scratch just looks awful.

Joke of the day -- (thanks Uncle Tom) -- Why does a flamingo lift up one leg? Because if he lifted up both legs it would fall over.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, May 26, 2004 9:40 PM CDT

Chris's day was a little backward. Because today was the award ceremony for the student volunteers, Dad had to move Chris' regular Wednesday morning clinic appointment to the afternoon. Although Chris' class explore a few topics today (he was very happy that the school's introduction to sex education class only lasted these past two days; in his mind, that was more than enough -- what he doesn't know yet is that he'll get more on that topic next year), but they were mostly concerned with getting the classroom ready for summer. When Dad went to pick up Chris, he was hot and tired from manning his post. Although it is next to seven trees honoring the Challenger and Columbia space shuttle crews, they're pine trees and not too shady. Chris reported to Dad that many of the fifth grade volunteers who earned awards were still wearing their volunteer awards at the end of the day, so they obviously passed the "coolness" test.

Dad had a drink and a snack ready for Chris after school, and the guys headed right for the clinic. Chris' blood test results today were: white blood cells remained at 3.7 (normal: 4.0 - 12.0), hemoglobin dropped to 10.8 (normal: 11.5 - 14.5), platelets dropped to 24 (normal: 150 - 450), while his ANC remained at 1800 (normal: 1400 - 7400). We passed on to the staff that Chris had a very sharp pain (thankfully short in duration) in his ankle this morning. That brought up the topic of bone scans and scans in general. The staff will try to schedule them around Chris' busy summer. The guys also picked up some medicine (Vantin) that precedes next week's chemo: Irinotecan. Chris was a little bummed that his first full day of summer vacation will be spent at the clinic (probably for a platelet transfusion) and his first week of summer vacation will be at the clinic getting chemo at the clinic. Having said that, he smiled and shrugged it off.

The guys had a shopping task after the clinic visit, and while doing so, they found the new Lord of the Rings DVD. Since Mom had to work several hours later than usual, Chris recommended pizza and a movie. Dad went along with that request; the guys (and Genie) did a pizza and a movie.

Medically, Chris had some congestion but elected not to take any Benedryl at bedtime (he fell right to sleep). Other than low platelets, he is doing just fine.

Joke of the day -- (thanks Uncle Tom) -- Doctor, Doctor...I swallowed a roll of film! Let's hope nothing develops.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, May 25, 2004 9:44 PM CDT

Hi Everybuddy!

It was a very interesting day for Chris. He attended a full day of school, was inducted into the Principal's Honor Club (with Mom and Dad watching), and we celebrated the fifth anniversary of Chris having been diagnosed with cancer. Five years ago, this day seemed to have never ended for Mom and Dad as more and more bad news came in about Chris' illness. Things got steadily worse for Chris, and he became acquainted with things like morphine and atropine. It was a time that no parent ever wants to experience. And yet, out of all of the hustle and bustle of undergoing the first of many medical scans and bone marrow aspirates, the pain, weakness and illness, and the sad realization that he missed graduating with his preschool class as he was being diagnosed, Chris was thoughtful enough right from the very beginning of this nightmare to come up with the idea of having a bowl of Hershey's chocolate Hugs and Kisses for his nurses, doctors and technicians who came to visit or help him. We continue that practice to this day, and have accounted for a substantial amount of chocolate products made in Hershey, PA over the past five years. Chris has been in almost constant "contact with the enemy" for five years -- longer than the US was involved in W.W.II -- and we're quite proud of his outlook on life. We are more than tickled to still have him here with us, enjoying life so much, when way back then, we didn't know whether he'd make it to his sixth birthday. Each day is a gift, as the adage goes, which is why it is called the present.

Chris' day at school started off on safety patrol. Unlike some who just want to tell the younger kids when they're doing something wrong, Chris says hi to everyone. They seem to like that approach. Before leaving home, Chris was offered Benedryl to deal with his stuffy nose, but he refused since he thought it was better than yesterday. Less than an hour into the school day, Mom received a telephone call from the school nurse, who wanted to know whether she could give Chris a Benedryl. A little bit after that, Mom and Dad both visited the school to watch as members of Chris' class were inducted into the Principal's Honor Club. It was a very nice ceremony, and the kids and parents had a little time together after the ceremony in the outdoor pavilion while the kids enjoyed some refreshments complements of the PTA.

Dad picked up Chris after his afternoon patrol and escorted him into the library where Dad was to brief the school's leadership on the results of the test of the student volunteer program. Chris secretly ate his snack and must have read through a half dozen "kid books" while waiting the hour and a half that the meeting lasted (as members discussed how to expand the program). At times, Dad looked up and saw Chris draped over a low bookshelf looking at the presentation slides. Chris helped develop much of the program and is interested in being a part of it next year.

After his time in the library, all that Chris wanted to do was go home and play with the dog and then relax. He also did some more typing drills (it's a game, so he volunteers to do it) and continued to expand the storyline for his new game. At one point during dinner, Chris talked about developing his storyline heroes so that they go to an undersea world and ride seahorses, meet a mermaid named Lori, and have Greg's "weapon fish" turn into a clownfish which would disrupt the bad guys by making them laugh a lot. We're quite impressed with his level of detail, humor, and the fact that he is actually writing this one down.

Soon after Mom got home, we all headed over to the school's school party. It too was in the outdoor pavilion and involved all sorts of games, pizza, and entertainment. As usual, more people than were expected came to the event and everyone seemed to have a good time. We opted out of the pizza and instead took Chris for a small celebration at a restaurant. He ordered a pancake and made a special request for some bacon (a new found favorite food). He also liked the server so she was awarded with a happy face pin.

Medically, was a repeat of the last three days with Chris and congestion. He tried to go without any Benedryl this morning but he needed some shortly after class began.

Joke of the day -- (thanks Uncle Tom) -- Teacher: You missed school yesterday didn't you? Pupil: Not very much.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, May 24, 2004 9:53 PM CDT

Hi Everybuddy!

Chris had an interesting day, complete with a trip to the clinic, school, and a visit by a deputy sheriff. His day started off with him performing his duty at his school safety patrol post. Dad has been dropping him off and sort of hanging nearby in the library; Chris can't hear the school bell either due to the distance of his post from the bell or perhaps due to his hearing loss. After performing his patrol duties, Chris headed off to the clinic. Chris' blood test results today were: white blood cells dropped to 3.7 (normal: 4.0 - 12.0), hemoglobin rose to 11.8 (normal: 11.5 - 14.5), platelets dropped to 40 (normal: 150 - 450), while his ANC dropped to 1800 (normal: 1400 - 7400). Clinic staff members were pleased with his blood counts and Chris did not have to go back for any transfusions nor need to restart G-CSF shots. He got the nurses going by wearing his new safety patrol sash into the clinic while carrying a little pad and pen. He wrote one nurse up for giving a finger poke without a permit.

Chris liked school today; somehow he had "earned" a coupon that got him out of math class so he could read a book. Nice deal! He was named the leader of a team that is writing a story as a group. Chris wanted to stop by McDonalds after school and get some chicken McNuggets and a very large drink. The guys then headed for home and Chris watched the movie "Johnny English" before starting on his computer game that teaches typing. The traditional typing drill are cleverly "hidden" in skiing and skateboarding games. Thus far, he has played in a pretty concerted fashion and has even begun to type the storyline for his video game that he thinks that he'll develop during his upcoming summer camp week during which he will learn how video games are developed. "Allie" is one of three major heroes and rides a horse and fires a bow at the bad guys in Chris' storyline. The character, "Chris" walks around with a sword, while and his friend "Greg" (the last hero) carries a frozen fish as a weapon (obviously it is not too serious a fantasy game). This game idea is being dedicated to Allie, according to Chris. Grandma and Grandpa got a real earful about the game when they spoke with Chris on the phone. We're only reporting a very abridged version of the game.

Once Mom got home this evening, we headed over to the local sheriff's office. We've recently learned that someone might be targeting us for possible identity theft. Chris again wore his patrol belt into the station; he was a little disappointed that no one there noticed. He had planned to swagger like a sheriff on an old western-style movie. Who knows what he'll do next? We ended up having to return home for an interview by a deputy. Chris introduced himself to the responding deputy, who happened to know one of Chris' fourth grade
friends.

Medically, Chris had a good day but still has the congestion problem. Other than some Benedryl, he didn't require any other "as needed" medications. Mom noticed some new bruises on Chris' legs and feet, but Chris claimed they were from camp. We didn't notice them last night, but who knows?

Joke of the day -- (thanks Uncle Tom) -- Why did the lion eat the tightrope walker? A: So he could have a balanced meal.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, May 23, 2004 9:24 PM CDT

Hi Everybuddy!

Mom and Dad arrived at Chris' campground a little early; the kids were having an "awards ceremony" so Mom and Dad walked around the campground so as to not disturb the campers during their finally rally for the weekend. Before linking up with Chris, Mom and Dad were approached by several counselors (who were not assigned to Chris' cabin), who told us how much they enjoyed Chris. As it turns out, Chris "warmed up" after Mom and Dad dropped him off, and he changed his mind about trying more activities at camp. He tried scuba diving in the pool with the certified instructors from nearby University of South Florida, and there are photos to prove it. We'll try to put the pictures up on his webpage soon. Chris looked good and he told Dad that now he'd like to borrow Dad's diving stuff to use in our pool.

Chris also attended the self-defense program and ended up being "the demonstrator." We knew that Chris, having earned a black belt in the past, could handle that responsibility, but all of us were surprised to learn that that the professional who provided the instruction to these campers was none other than Chris' own karate instructor. They apparently had a good time, and there were a sufficient number of impressed kids and counselors. Chris had such a good time doing it that he is thinking about returning to karate lessons at his next opportunity, maybe even tomorrow, if he doesn't need a platelet transfusion.

This camp had other things to do, but not on the scope of Boggy Creek Camp (on the other hand, it is not as large or as well established as Boggy). Nonetheless, Chris had a good time and will recommend that other kids go to this camp in August (the next opportunity). Chris also met a new friend, a girl who has already called here twice. She seems nice enough, but part of the mystery is that the girl told Chris that her mom went to high school or college with Mom. Since Mom did not go to school in Florida, this is curious. We'll figure out this mystery soon after we learn more about who this young lady is.

We picked up Chris just before lunch, so we took him to Mel's Hot Dogs. The shift manager said hello, as did Mel's daughter, who was also working there today. Because Mel's is located a few blocks from Busch Gardens, we stopped there too to renew our passes. Chris and Dad sometimes go for an hour or two during the summer, right after leaving the clinic, which is only about two miles away from Busch Gardens. Chris doesn't have the stamina to spend a full day there, but he and Dad sneak in and out of there throughout the summer.

Once home, Chris did several things. The first was to play with Genie, who by the way, took her rope toy into Chris' room, unsuccessfully looking to awaken him this morning. Chris also watched part of the movie, "'Miracle." (His camp wasn't so primitive that they didn't have access to a TV, so the campers were able to watch part of the final moments of the Tampa Bay Lightning's victory in the playoff series. They are now Stanley Cup-bound and all the campers knew it. Most of these kids have met members of this team as a result of its support of the young cancer patients. The kids are very happy about the team's success, and they know that the team members are really a bunch of nice guys. They routinely have a box set aside for these young cancer patients, and they throw a great Christmas party in which their whole families participate.) Chris also started to play a new computer game designed to teach kids, through play, how to type. We'll soon see how well it works. Mom watched Chris for a while and was dutifully impressed by the play style which held Chris' attention, and by the fact that Chris' "hunt and peck" typing style worked well enough to earn him up to 25 words per minute with 5 errors. Mom thought that wasn't a bad starting point for a 10 year old who never really paid any attention to typing before.

Medically, Chris had a good day but for that lingering congestion and coughing problem. He has been getting a Benedryl both in the morning and evening. He is coughing more but doesn't sound congested. He has been able to sleep after the Benedryl kicks in at bedtime.

Joke of the day -- (thanks Uncle Tom) -- What's the best way to make a pair of trousers last? Make the coat first

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, May 22, 2004 7:53 PM CDT

Hi Everybuddy!

All is quiet on the western coast (of Florida, that is). We didn't get a call from camp, so hopefully Chris is enjoying neat arts and crafts projects and/or a good deal of other outside activities. Mom and Dad wonder whether there might be tv set at the camp, tracking the Tampa Bay Lightning hockey team's quest to get to the Stanley Cup playoffs. Chris is due to come home tomorrow.

Joke of the day -- (thanks Uncle Tom) -- What do frogs like to drink? Croaka Cola.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, May 21, 2004 9:10 PM CDT

Hi Everybuddy!

It was deja-vu all over again. Despite receiving a record number of platelets on Wednesday, Chris needed some more again today. He was still able to go to both school and camp. He also got assigned a safety patrol post. It's an open stretch of sidewalk that's not near anyone and has little shade. Chris was lonely until Dad talked to him about how all of the smaller kids in the school pass that way, that he could help them and say hi to them, making them feel better and all. He liked that idea. It does have some shade from the seven pine trees that were planted as a tribute to the crew of the Challenger.

This morning, Chris went in to school to perform his patrol duties, then he and Dad left before the second bell rang. Dad made sure that it was all right with the teacher; there was no need to sign Chris out of school since attendance hadn't been taken yet. The guys then headed over to the clinic for Chris' scheduled appointment. Schedule-wise, the timing between performing his duties and then going to the clinic worked out well. As it turned out (and a bit of a surprise to us), Chris needed platelets. Chris' blood test results today were: white blood cells rose to 5.1 (normal: 4.0 - 12.0), hemoglobin dropped to 10.9 (normal: 11.5 - 14.5), platelets dropped were 27 (normal: 150 - 450), while his ANC rose to 3000 (normal: 1400 - 7400). The doctor originally wanted Chris to continue his G-CSF shots until his ANC rose to 5000, but she reconsidered when she recalled that Chris was going to camp this weekend. She also decided to give him platelets even though he was above "20" because none of us knew what he'd be doing at camp this weekend.

School was pretty cool and Chris talked about playing dodgeball and his safety patrol duties. Today Chris wanted to stop by McDonalds and get some chicken McNuggets and a very large drink (as there is no water fountain near his safety patrol post). Chris was strictly business at the clinic (much to the disappointment of Nurse Teri). The platelet transfusion went well although Chris was distracted by something being wrong with his right foot. He wanted some "nerve medicine" (a drug for long-term problems). We all went into a huddle since it was obvious that Chris was quite distracted by this pain. One of the nurses is a runner. After Chris was able to provide a better description of his pain, she realized that it sounded more like a cramp. She helped him do some stretching while the others began investigating other possibilities. Teri's idea worked and the pain went away after five more minutes or so and didn't trouble him anymore. As usual, the platelets were provided by the blood team. Thanks!

After the transfusion, the guys headed for downtown to pick up Mom at her office so that she could go with them to drop off Chris at the campground where "Camp Good Days" has established a camp for the weekend. Everyone we met there were very nice. There was a nurse present to accept medications for the campers. She was particularly nice and it was obvious that she had read up on her future patients of the weekend. We then headed over to Chris' cabin, where he finally was able to snag a top bunk in which to sleep (he hasn't been able to get one at Boggy Creek yet). For some reason, Chris was on the quiet side this evening. We're not sure why, but possibly it may be because a lot of the kids seemed to know one another and Chris may have felt like an outsider, or because he was still dealing with the after effects of the transfusion. In any event, he'll probably be fine and have fun. The kids will be doing a lot of nice things this weekend. Chris passed up on a scuba lesson in the pool (he doesn't do it with Dad either), but there are plenty of other things to keep him busy. He is pretty good with a snorkel though. Mom and Dad went to dinner by themselves, which hasn't happened in a few years.

Medically, Chris had a good day but for some congestion and a little coughing. Other than some Benedryl, he didn't require any other as needed medications. The thing with the feet during the platelet transfusions was a first. He got "itchy feet" about forty-eight hours after his last antibody treatment in the old days but never during a transfusion. The problem then was more of a pain thing, rather than the cramp problem, which seems to be today's problem.

Joke of the day -- (thanks Uncle Tom) -- Why were you late? Sorry, teacher, I overslept. You mean you need to sleep at home too?!?!

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, May 20, 2004 9:02 PM CDT

Hi Everybuddy!

As they say, the third time is the charm. In a repeat of yesterday's effort to get Chris to safety patrol training, Chris went to school early and this time, the safety patrol training took place. Chris has not yet been assigned to a specific post, but will have one assigned tomorrow. Dad and Chris worked out that he will go in to school at 0735, perform his patrol duties, and then they will breakaway and do the "clinic thing." They'll talk to Chris' teacher tomorrow morning before the guys do that.

School was "interesting;" the accelerated reading (AR) celebration was today. Chris read enough books and scored enough points to be able to attend the celebration and be awarded another reader "dog tag." The celebration highlighted an animal act involving exotic birds and trained dogs. Chris liked it when one dog pushed another dog in a baby (puppy) carriage. After school, Chris and Dad made the rounds with some of the teachers for some project. After that, the guys went right home to pick up Mom and go to dinner. Chris first showed Mom his reading award and a new trick involving a straw, his underarm, and an undesirable noise outcome (trust us, you don't want to know). Of course he'll have to try it out on the kids at camp this weekend.

After dinner in an old-time neighborhood pizza kind of place and a short shopping stop, we went home to finish packing Chris' stuff for camp. He'll be heading to a weekend camp tomorrow evening and return Sunday afternoon. He is looking forward to going and is supposed to report back (from a 10 year old's perspective) to his cancer clinic whether or not they should recommend other kids to go there or not.

Medically, Chris had a good day save for needing two doses of Benedryl for congestion. We're not sure if the sore throat was a precursor for the congestion, but Dad will speak to the doctor tomorrow about the symptoms.

Joke of the day -- (thanks Uncle Tom) -- What goes putt putt putt putt putt? A bad golfer.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, May 19, 2004 9:08 PM CDT

Hi Everybuddy!

In a repeat of yesterday's effort to get Chris to safety patrol training, Dad took Chris in to school a little early this morning, only to learn that it had been again postponed until tomorrow morning. The guys then bade Chris' teacher a temporary farewell, then headed over to the clinic for Chris' originally scheduled appointment (much to the surprise of clinic staff members, who thought that Chris might be a little later than normal due to the safety patrol meeting). As it turned out (no surprise to us), Chris needed platelets again. Chris' blood test results today were: white blood cells rose to 3.9 (normal: 4.0 - 12.0), hemoglobin dropped to 10.4 (normal: 11.5 - 14.5), platelets dropped to 11 (normal: 150 - 450), while his ANC rose to 2400 (normal: 1400 - 7400). The doctor told him that he could go to school, but had to keep going with the G-CSF shots.

School was "ok" and this afternoon, Chris and Dad stopped by to see a few teachers before returning to the clinic for a platelet transfusion. They stopped by the "drink store," where Chris got a transfusion snack and said to all of the Chris "fans" there. The transfusion went quite well but for Chris developing two small hives. Today he received 14 units of platelets, which we think is a new (high quantity) record for him. As usual, the platelets were provided by the blood team. Thanks!

After the transfusion, the guys went home, picked up Mom, then went on to see the new movie, "Shrek 2." Chris and Dad both really liked it, and Mom thought that it was good too. Chris ate more popcorn at one sitting than he's ever eaten before. After the movie, we stopped for a quick dinner at the mall's food court. Chris then snuck up on a lady who runs a jewelry kiosk in the mall and is a Chris friend. He startled her by sneaking up behind her (her brother saw him coming but didn't tell her). She liked it though. On the way home, a tired but happy Chris fell asleep in the car.

Medically, Chris had a good day but for feeling nauseous on the way to the clinic for which he got a Zofran. As noted above, he also got some hives during the transfusion but nothing very serious. Thankfully, unlike two weeks ago, he did not have a fever tonight. He also did not have a sore throat in the morning, so he was allowed to go to school.

Joke of the day -- (thanks Uncle Tom) -- What kind of bugs do you find in a graveyard? "Zom-bees."

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, May 18, 2004 9:23 PM CDT

Hi Everybuddy!

Dad usually sneaks in to Chris' room on G-CSF mornings and puts some Emla cream on his leg where the shot eventually takes place. Dad normally can do it without awakening Chris, but today Chris acted as if he was fully awake (or so it seemed). As soon as Dad put the Tegaderm over the cream, Chris appeared to be fast asleep again. At the appropriate time, genie changed that.

Dad took Chris in to school a little early as it was supposed to be the first day of Safety Patrol training. Something changed and it was postponed until tomorrow (right during tomorrow's anticipated clinic visit). Dad called the clinic and they said to bring him in just as soon as training is complete. He'll miss more class this way unfortunately. Chris groaned at the thought of another early morning wake up call.

School went "well" and Chris said that he's glad it's almost over, although on one hand he is going to miss school. The guys went right home after school, where Chris was pleasantly surprised to see Mom who has been working at home. His first order of business was to finish his LEGO project then showed Mom and Dad all of its features. After that break, we headed for the homework area and helped Chris brainstorm for his homework assignment. He has to use vocabulary words in sentences (which he doesn't think is fun). However, Dad learned that if he can use the words in sentences that, together, tell a story, he loves it. In today's story, each sentence had to be a compound sentence using the connecting words: "and," "but," or "or." It was a story about how build a better dust bunny catcher; it followed on last week's assignment and was sort of cute and funny. He did very well with his best penmanship and spelling for today's story. We don't know what his teacher thinks about the stories, but it's fun putting them together.

As soon as the homework was finished, Chris conned Dad into going swimming. The guys played Squidditch 2, another Chris invention, and got quite a workout. Chris came from behind and snatched victory from Dad's grasp. To score his last point, Mom saw him climb over Dad's back and jump over his head to catch the "snitch" (and nearly drown Dad in so doing). It was a blast! Chris got cleaned up after leaving the pool as he had Cub Scouts today.

The Cub Scout meeting was fun in that they made plaster replicas of fossils. They also watched a "Magic School Bus" movie going into a volcano during an eruption.

For some reason Chris was singing an "oldies" song, "Who Likes Short Shorts." He seems to know the tune, but we have no idea where he may have heard the song (probably a commercial on tv). Some other Chris humor. For the last year the blood test machine has had to go to a recount on Chris' low platelet levels. It shows a little header "Recounting Platelets." Chris asked Dad if he could change his e-mail screen name to "Recounting Platelets." The nurse didn't see that one coming, and she laughed so hard that she had to stop what she was doing until she regained her composure.

Medically, Chris did not have any "side-effect" problems until bedtime, when he announced that he may have a sore throat. He also has a few petechiea.

Joke of the day -- (thanks Uncle Tom) -- A young nurse was nervous about giving vaccinations but gave it her best shot.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, May 17, 2004 9:20 PM CDT

Hi Everybuddy!

The guys did things a bit different this Monday: they held off on Chris' clinic visit until the afternoon. For the first time this year, Chris was at school on a Monday for the start of class. We won't do that again. Chris did a good job getting up and getting ready despite a compressed timeline (he usually has an hour more time at home on a clinic day than on a school day). It was good that he went in early since there was some safety patrol stuff to do.

School went well and Chris said that he doesn't miss much on a Monday morning. He didn't have a baby chick update today. The kids have been told to stay away from the birdhouse that Chris brought in to school for it to use. He had some nausea after lunch and needed a Zofran to fight it. Since it was his last such pill in the school's stocks for Chris, Dad restocked them after school.

The guys made a quick stop at the "drink" store since Chris was thirsty. He got some terribly sour candies as a snack (Mom later learned just how sour they were; her quote: "nasty!!"). This afternoon's clinic visit was very weird. There were numerous siblings and patients who were mostly below the age of three. One had a badly running nose and would not cover his mouth (nor did anyone put a mask on him). Needless to say, the guys waited in the hall. For some reason things were weird in that numerous nurses passed Chris by and asked if he was checked in, but no one did anything about actually checking him in. That eventually changed and he did get a blood test done.

Chris' blood test results today were: white blood cells remained at 2.2 (normal: 4.0 - 12.0), hemoglobin rose to 11.1 (normal: 11.5 - 14.5), platelets dropped to 27 (normal: 150 - 450), while his ANC dropped to 500 (normal: 1400 - 7400). The doctor told him that he could go to school but had to restart his G-CSF shots. They are expecting him to need platelets on Wednesday, which puts him back in the morning schedule. The guys also received his full panel (liver function test) results from last week. His "full panel" blood test results are the following: ALT dropped to 61 (normal: 12 - 34), AST dropped to 56 (normal: 22 - 44), and BUN/CRE Ratio rose to 20 (normal: 15 - 24). Those are pretty good results for Chris.

After the clinic visit, the guys stopped at Toys R Us on a mission from Grandma. Chris got a new LEGO kit, on which he worked later in the afternoon. The guys' next stop was Mel's Hot Dogs. They hadn't been there in ages, they needed a good dog (well, other than Genie), and they had a gift for Mel: an antique-looking sign with a picture of a hot dog that said, "Hot Dogs: you'll relish the flavor." He liked it and told Chris that he'd find a special place to hang the thing. The guys then stopped at one more place before heading home so Chris could get his G-CSF shot (that went well).

Just as Mom got home late this evening, Chris got a call from Grannylyn and Granddad. He didn't mention what was discussed, but he was on the phone for a while before relinquishing it to Mom.

Medically, things went well, but for some nausea after lunch. The school nurse gave him a Zofran for that. Dad coordinated bringing home Chris' extensive medicine collection on the last day of school. The school nurse has done a great job and we appreciate all of her efforts to help Chris. It takes a lot of concerned people to keep him healthy.

For all of you who have been concerned about Becca (another of Chris' friends): she has made a remarkable turnabout. She is now feeling better and is again able to take chemo and is going on a church retreat this weekend.

Joke of the day -- (thanks Uncle Tom) -- What did a disgruntled Mary Poppins tell the chef after dinner? "Super cauliflower cheese, but eggs were quite atrocious!"

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, May 16, 2004 9:31 PM CDT

Hi Everybuddy!

Chris had another great day. He got up on his own and played a video game until Dad came out to wake him up. They went right into the breakfast mode. Then Mom joined him and off they went to church. There, he lit a large purple candle for his friend (he thought she'd like that color) and knelt on the floor (the kneeler was in use by someone else) and said a quiet prayer. One of the choir ladies came over to say hello at that point and, not knowing what had happened this week, asked Mom what was going on. Tears built up in her eyes, which in turn caused a couple of tears in Mom's eyes. When Chris stood up, he asked what we were crying about.

After church, Mom and Chris returned home, where Chris ate his leftover pizza (thereby keeping his Sunday pizza for lunch tradition going). He called Greg, who arrived not too much later. Mom carted the guys over to a small local amusement park, where they played miniature golf and drove go-carts. Greg is now big enough to drive his own go-cart, but Chris is still just a little too short, so he rode with Mom. They had fun, and raced the circuit three times. After stopping for drinks on the way home, Mom dropped Greg back off at his own home, then she and Chris headed off for a much needed run to the supermarket. Tonight the second Mummy movie was on; Chris likes this movie better than the original one. As that played, Uncle Brian called and chatted for quite a while.

Medically Chris didn't have any problems, but for a little bit of diarrhea.

Joke of the day -- (thanks Uncle Tom) -- What do you call a frog with no hind legs? Unhoppy.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, May 15, 2004 9:57 PM CDT

Hi Everybuddy!

Chris had a nice day, even though he spent it at home. Chris woke up without an alarm clock at midmorning. Mom decided to do the breakfast honors this morning. Although Chris was already up, he still wanted to do the ritual call for breakfast using the new bell. So, he went back to his room and waited for Mom to sound the "order up!" alarm. Mom's not so sure about that bell, especially in the morning. (She doesn't like it at evening either. If the bell "disappears," she'd be the likely suspect . . .)

As soon as breakfast was over, Chris tried calling Greg, who was unfortunately out. His mom relayed Chris' message to Greg and his Dad; they showed up here about forty minutes later. One of the first things the boys did was play a video game. Then they had a "blast" trying out the water rocket set up. It is made of PVC pipe and has a valve stem to which a bike pump is attached. A plastic soft drink bottle filled with water is attached. Using the bike pump, they launched the bottle high into the air, leaving a wet contrail in it wake. One of Greg's launches actually rose to about twenty-five feet. Chris' highest one wasn't too far off from that mark either.

Swimming was the next order of the day, and the boys had a good time there, too. We wanted to feed lunch to Greg in enough time so it wasn't a factor in his afternoon Little League baseball game. Since Dad was going to be out, he suggested Papa John's pizza. Both boys liked that idea and began chanting, "Papa John, Papa John!" Dad left home on that note.

After Greg left, a reluctant Chris and Mom began Phase 2 of cleaning Chris' room. Today, Chris decided to give away a number of his "younger age group" videotapes to the Tampa clinic. It will be a real windfall for the kids to watch. He also set aide quite a few toys. We guess that he is either growing up or getting tired of spring cleaning (probably both).

Later, Mom brought in dinner while the guys continued working on some projects. Chris helped Dad finish up a project that Dad had working on in Chris' bathroom closet. Goofing off with Genie was also in the cards. This evening, we watched the movie, "The Mummy." Mom had never seen, but the guys have seen it from time to time at the clinic. There were a couple of scenes that Mom thought were "gross," but all in all, it wasn't bad. During the movie, Dad noticed Mom sitting on the couch with Genie laying on the couch next to her, with Chris laying down using Genie as a pillow. Genie let him lay on her for about twenty minutes or so.

Near the end of the movie, Chris got a call from Grandma and Grandpa. Chris, who learned yesterday that he had been nominated to become a safety patrol at school, was really surprised to learn that Grandma had been one, too, way back when (they had cars in those days?). They were just checking in, and spoke with him for a little while until the infamous Chris question: "Do you want to speak to my Dad?" They did so, until Dad asked: "Do you want to speak to Alison?" It worked, and they did. We're glad that they checked in since we're concerned about his grieving about Allie. Thanks Grandma and Grandpa; he had a nice call with them and a nice visit with Greg. We know that he has been thinking about her (as we all have). As he straightened up his room, he found a small notebook labeled, "Super Secret." Allie's signature is on the inside front cover. Chris became a little more quiet and gave to Mom to place in his scrapbook. He was also quiet at bedtime, but he seems to be ok.

Medically Chris didn't have any problems, but for a couple of little heartburn episodes in the afternoon. They weren't bad though.

Joke of the day -- (thanks Uncle Tom) -- What kind of snake is good at math? An adder.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, May 14, 2004 9:52 PM CDT

Hi Everybuddy!

Chris was awakened today by "Genie the Ball Girl," who used a tennis ball to drop on him instead of her usual rope toy (that she couldn't find this morning). Ah, well, whatever works. He awoke in relatively good spirits, and stayed that way all day, having chosen to focus more on today's activities than last night's news.

Chris had another quick clinic morning, didn't get to see any friends there, but was able to invent a new game with Dad. It required the clinic's ball to bounce on a table top enroute to the opponent (sort of like a cross between ping pong and catch). Chris needed platelets again, but his need this week is thankfully more in line with his usual needs. Chris' blood test results today were: white blood cells rose to 2.2 (normal: 4.0 - 12.0), hemoglobin dropped to 10.7 (normal: 11.5 - 14.5), platelets dropped to 17 (normal: 150 - 450), while his ANC rose to 800 (normal: 1400 - 7400). The doctor was more pleased with these numbers, but because of his still lowered ANC, she kept his dose of Temodar at 100 mg. He was allowed to go to school but was required to return after school for a platelet transfusion.

When the guys arrived at school, Chris brought on the bird house that he had made for a Cub Scout project with Dad a couple of years ago. The teacher supervised him placing it near where the baby chick had been seen on the ground. When Dad picked up Chris later in the afternoon, Chris told him that the chick had "moved in." A few of the students came up to Dad after class and asked if Chris had really made the bird house. They asked because it really is neat and was nicely painted (he did a really good job). The answer was that yes, it was a Chris project; the kids were impressed. Also, before the guys actually left the classroom, a safety patrol runner came by with a few envelopes. Chris then found out that he has been asked to be a safety patrol for next year; training begins next week. Dad learned earlier this year while working on the volunteer program that being selected to be a safety patrol here is a big deal. Chris was thrilled. Between being a safety patrol and a peer mediator next year, he'll be busy.

Chris decided to pass on the usual McDonalds today, so the guys stopped by the "drink store" for a snack and a drink. Aside from the after school snack, it also allowed him to take his pre-medications for the transfusion. When Chris got to the clinic, he decided to watch the movie "The Mummy." He thinks that it's cool since it's a cross between a horror movie and a comedy. It's not too scary since it's funny too, but he didn't like the part where they talk about how people were mummified.

After the transfusion (which went well), the guys stopped at Toys R Us. Chris spent his allowance on a drawing device that helps him "copy" a picture. Needless to say, once he got home, he started pumping out the drawings. He was also impressed to see that the new Harry Potter LEGOs for the third movie are starting to appear in stores. The guys headed for home to wait for Mom to come home from work. She took the guys to dinner and then to the nearby book store. Chris was interested in buying another drawing book but we told him to wait on that purchase for a while. He took it in stride and has always been good about waiting for things. It never ceases to amaze Mom and Dad that Chris has "groupies" among the servers at our usual dining haunts. They watch for him. We had another very good server tonight who likes Chris; she wound up with a happy face pin. (Who would have ever thought that the happy face pin would have been so popular?)

Joke of the day -- (thanks Uncle Tom) -- What did the judge say when he saw the skunk in the courtroom? "Odor in the court!"

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, May 13, 2004 10:05 PM CDT

Hi Everybuddy!

Chris began this day in a new way. Dad has always called him to breakfast by saying, "Come and get it" and then imitates a triangle ringing. For whatever reason, it got Chris going every morning, as if it were the official wakeup signal. Now, at Chris' request, Dad says, "Order up!" and rings a little bell (like a short order cook might do). Whatever . . .

Chris had a mission this morning: to deliver brownies to the chess club coach for this afternoon's chess club party. She was pleasantly surprised. Chris' big things at school today were his peer mediation training and an update on the little chick hiding in a bush near his classroom. The students are fully aware that there is a Mockingbird parent always on watch over the chick, even if it is on the ground (they keep getting "buzzed" by the bird if they get too close). Tomorrow, Chris is going to bring in a bird house that he made for a Cub Scout project for the chick to use.

After school was the chess club meeting, the usual game, and a party. Chris won his game today. He was playing a fifth grade girl who gave him quite a good game. He was also presented an impressive-looking chess pin that looks like a knight (horse head). He was also "applauded" for the brownies that he "made" (he took the bow for Dad's efforts).

The guys headed right for home after chess club, where Chris took a small break. He started working on his story on his computer but came out after thirty minutes with "writer's block." He then made short work of some complicated multiplication homework and got them all correct. He and Dad then checked his e-mails and Chris enjoyed some things Uncle Tom had sent (as usual).

When Mom got home, Chris had a dining suggestion and persuaded the rest of us to go along; since there were some medicines to pick up, we caved in. We had a nice server and Chris eventually gave her a happy face pin. When he did it, another server was standing nearby, and she made a big fuss over the pin. She said that her roommate (also previously a server there) had received a pin "ages" ago, but she had never had us as customers. Chris gave her a pin too, to which she said "I was hoping that I could get one someday." Both servers then gave Chris one of their pins (the chain awards servers for good performance with pins). What Chris did next was even new to Mom and Dad. With his pins stuck to his shirt, he tucked a cloth napkin under his belt, then pretended to be a server. He cracked up our server when she saw him straighten the adjacent (empty) table as if he worked there. She offered him a job as her assistant.

Once home, Chris started taking his usual evening medicines. It was at that time, we had to do one of the most difficult things that we've ever had to do: tell him that one of his dearest friends, Allie, passed away today. Chris had been aware that she had gone to the intensive care unit at her hospital, but he was so used to her pulling off the impossible that he thought it was more like a post-surgery kind of stay. Sadly, her last stay was for more dire reasons. Early this morning, one of our heroines finally was able to rest. Allie was a person who could do anything. She was a good student, a terrific friend, an older sister, not to mention an avid young sportswoman and equestrienne. Although she and Chris rarely actually see each other anymore, when they did, it was as if they had seen only visited with each other yesterday. They really were very close. She met every setback with courage and underwent every treatment with enthusiasm and determination. Despite all of her numerous operations, she functioned as if they had never occurred. She was an amazing young lady and we all will sorely miss her.

Upon realizing the finality of this news, Chris seemed to be absolutely stunned. Dad talked to him gently, and eventually led him to the drums to "send a song to heaven." It was while he was in there that he broke down for a few minutes. He fought to pull himself together, and was able to do so. Chris was fairly quiet the rest of the evening, but shared with Mom through some hugs. He said that he felt both sad (because he's really going to miss her) and happy (because she doesn't have to deal with cancer ever again and looks forward to playing with her again in heaven someday). One of his fears was that he too was going to die soon. Both Dad and Mom reassured him that everybody walks a different path. He understood that too on one level, but this news is so new that he needs time to let it all sink in. Chris was upset in a quiet way, but he seemingly understands that sometimes a body can take only so much battle. She was one of the brightest beacons for Chris in his own fight with cancer. We will never forget Allie's smile. In the words of their customary farewell after having played together: "love you, miss you, bye!"

Joke of the day -- (thanks Uncle Tom) --Why was the frog afraid to park his car? He was afraid it would get "toad" away.

Thank you for your prayers and for remembering Chris, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, May 12, 2004 9:52 PM CDT

Hi Everybuddy!

Chris had a quick clinic day. We were happy to learn that Chris is actually holding on to platelets again (well, in his own way). Chris' blood test results today were: white blood cells rose to 2.1 (normal: 4.0 - 12.0), hemoglobin rose to 11.1 (normal: 11.5 - 14.5), platelets dropped to 28 (normal: 150 - 450), while his ANC remained at 700 (normal: 1400 - 7400). The doctor was happier about these numbers, but remains concerned about his borderline ANC. She decided that he could go to school, didn't need G-CSF, and should start chemo (using Temodar) but only at 100 mg per day instead of the usual 140 mg per day. She may increase the dosage to his full level depending upon
Friday's blood test results. Having said that, everyone is making plans for him to receive another platelet transfusion on Friday. No one had any explanations for his recent lower back pain (beginning Monday evening and throughout Tuesday, Chris complained of what sounded like a pulled muscle in his lower back area, but over time we discovered he really meant pain emanating from his bone marrow aspirate sites) nor the late diarrhea.

When the guys made it to school, they found that Chris' class was actually in their classroom. It was an exciting day! The big news was that he and a friend will be writing a story, which apparently will have a lot of sword fighting in it. Both Dad and Mom are trying to gently steer the story in another (gentler) direction. The other big news around the classroom concerned a baby chick, probably a Mockingbird chick. One of the boys set up a cardboard box for it to move into (since it cannot fly). When the boy went to check on the chick, he was buzzed by adult Mockingbirds (similar to what happened in the old Hitchcock film, "The Birds"). He tried another sortie a little later in the day but met with the same results. The kids thought that it was cool. Chris' teacher, a member of the Audubon Society, taught the students the sound of a bird's distress cry.
Needless to say, the birds heard it a lot today. She later told Dad that the idea of teaching it to a classroom full of children might have been a bit of a mistake.

When Dad picked Chris up from school, he asked to go by McDonalds for "dunch;" Dad complied. The guys then stopped by a teacher's store to see if they had any goodies for volunteers (nope). Once home, Chris did his reading homework, then he and Dad worked on Chris' computer to get it ready for Chris' story project. Since the computer is an old, slow one, they had some waiting time. They decided (ok, Dad decided) to do spring cleaning in Chris' room. Whew! Genie wasn't much impressed since she thought they were working into her play time.

Joke of the day -- (thanks Uncle Tom) -- What do well dressed Florida frogs wear on their feet in summer? Open-toad shoes.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, May 11, 2004 9:06 PM CDT

Hi Everybuddy!

Today was a not so terrible Tuesday in that it was the last day of religious education classes (and therefore today's class was a party) and there was no scout meeting (and therefore no racing around). Chris made it through the day without any additional medication; who knows: maybe the Zantac is doing a good job for him. When Dad went to awaken Chris this morning, he couldn't find Genie. She had slept with Chris all night. When Dad opened the door to Chris' room, out came Genie, wearing a Tampa Bay Lightning scarf. She's a big supporter apparently.

School was nice and Chris officially got his FCAT (standardized testing) results, He did well in writing, too. His teacher is most impressed with his reading. Coincidentally, she and Chris have been reading the same books for pleasure. After school, the guys headed right home. Chris had three pages of math homework to do, and he knew that the guys had to go pick up a pizza before "God School" for the party Chris did a good job on getting through his work. Greg was hiding under a table at "God School" when Chris walked in; he snuck up and startled Chris a little. The rest of the kids had a good laugh (as did Chris and Greg). When the guys finally got home, it was time to run Genie around, so they played keep-away. She made two spectacular catches that would have put Snoopy to shame.

There is happy news to report from Chris' friends in Tallahassee: employees of the Florida Department of Financial Services raised over $62,900 for the American Cancer Society, a record amount of money raised in the Tallahassee area. They did it the old fashioned way -- through a tremendous amount of hard work: bake sales, lunches, book sales, silent auctions, and the Relay for Life walk, etc. In addition, the Division of Risk Management (within the Department of Financial Services) also won an award for the best campsite at the Relay for Life walk location, based on its educational materials and decorations. We are so very proud of them all, and grateful for the huge amount of work and love that they put into this effort every year.

Joke of the day -- (thanks Uncle Tom) -- What has two big claws and is very messy? A slobster.

On a more serious note, extra special thoughts and prayers are needed for Chris' friend, Allie. She is now in intensive care after a very rough night. We are keeping him posted about Allie's condition; she is too close of a friend to not let him know what is happening. Please also keep Becca close to your hearts at this time.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds. Becca, in particular, needs some extra special attention right now.

Love,

Chris, Alison and Pat

Monday, May 10, 2004 9:18 PM CDT

Hi Everybuddy!

Chris had a better day today. He required some more Zofran for nausea, which made the doctor think that perhaps he would feel better if he took Zantac every day. We were happy to learn that Chris actually held on to some platelets over the weekend. Chris' blood test results today were: white blood cells dropped to 1.8 (normal: 4.0 - 12.0), hemoglobin dropped to 9.5 (normal: 11.5 - 14.5), platelets dropped to 40 (normal: 150 - 450), while his ANC remained at 700 (normal: 1400 - 7400). The doctor was not overly impressed with these numbers, especially since he is almost three weeks out of chemo. So she decided to wait until after Wednesday's blood test to make the decision as to whether he should begin chemo again using Temodar (which is administered at home orally). She thinks that Chris may have some sort of acid reflux problem that could be getting confused with possible chemo side-effects problems. That's why she wants to see what happens when Chris starts taking Zantac 75.

While waiting for this morning's blood test, Chris and Dad played Uno. It was a cutthroat game. Some of the other people in the waiting room winced as Chris threw down one penalty card after another on Dad. Interestingly though, it ended up with a tie score. Chris actually didn't see any of his friends until just as the guys were leaving, so Chris missed out on his early morning socialization.

Chris and Dad had to walk around a bit to find Chris' classmates since, for some reason, the usual schedule had been modified. It turned out that they were in Art class. Chris' day in school went well. He ate a hamburger for lunch (very rare that he'd do that -- he's a hot dog kind of kid). When Dad went to pick him up this afternoon, somehow they ended up going all around the school looking for one of the student volunteer program committee members. The guys ended up in front of the classroom that holds the school store (an initiative by the advanced math teacher). She likes Chris and let him browse around even though it was really closed. She mentioned to Dad that Chris had done well on his Math FCAT (standardized testing). That's the second person who recently said something similar to Dad, so he asked her if she'd actually seen his scores (we haven't seen the results yet). It turned out that she had both his math and reading scores. Chris placed in the 95 percentile for both, so she too recommended that Chris be tested for advanced math for next year. Chris said that he is willing, and is looking forward to it. Actually, we're amazed that he absorbed so much, despite all the missed times due to treatments. He really gives it his all.

Chris said that he was "starving," so the guys stopped by McDonalds before heading over to do some needed shopping. They splurged, and Chris wound up with a small game to celebrate his FCAT scores (remember that Chris had to do his FCAT testing during the make-up periods due to chemo). Once at home, Chris enjoyed his snack and played his new game. It is a Quidditch game; he is quite good as a beater. He also managed some goof-off time with Genie. Chris also spoke with Grandma and Grandpa today. Chris also brought home some stuff that he had made for Mom for Mother's Day in a big envelope; he had not been able to finish the project before Mother's Day due to last week's transfusions. Chris acted as if the envelope held some adverse information (e.g., like a bad test score). Mom saw through his prank right away, and she loved her paper and popsicle stick bouquet of flowers and especially the "newspaper" classified ad for a mother. Topping the list of attributes being "sought" in this ad was "sleeping." ;-) Mom was required to "call Chris for an interview for the job." She got the job.

Joke of the day -- (thanks Uncle Tom) -- What do snakes put on their kitchen floors? Rep-tiles.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds. Special help in the thoughts and prayers department would be appreciated for Chris' dear friend, Allie. She is in-patient because her last chemo drug was very hard on her cardiovascular system, gallstones, and some fluid buildup. She may be in-patient for up to two weeks. Please also keep Becca close to your hearts at this time.

Love,

Chris, Alison and Pat

Sunday, May 9, 2004 9:59 PM CDT

Hi Everybuddy!

We celebrated a low key Mother's Day, which is just what this Mom wanted. No alarm clocks were activated. Once Mom awoke, Chris, Dad and Genie came in with a few gifts (including a basketweaving kit on which she and Chris will work at sometime in the near future).

After sharing breakfast together, Chris and Mom went to church as usual, but not before finding a little something unusual outside. There, at the side of the house where both Genie and our neighbor's dog had gathered, was a tiny, sweet and very dirty terrier dog. We invited her into our pool area for protection, which is where we made sure she had some food and water. She was wearing a collar with a telephone number on it thankfully. While Mom and Chris were at church, Dad eventually got through on the telephone to the dog's owner. She wasn't too far from home and was reunited with her family just before Mom and Chris returned home.

Afterwards, we all headed out for a movie and dinner. We saw "New York Minute," which Chris liked, especially since it starred Mary-Kate and Ashley Olsen. It's not an Academy Award contender, but it sits well with the preteen and teen age group. We also ate dinner at a local steakhouse where it is ok to throw peanut shells on the floor. Chris (and the rest of us) had a very "special" time there, joking with the server about how special everything was.

Medically, things went reasonably well, although Chris needed Zofran a couple of times this afternoon in order to calm nausea. His bruises seemed to be a bit more faded.

Joke of the day (thanks Uncle Tom) -- What kind of parties do trees have? Lumber parties.

On this Mother's Day, we'd like to wish all mothers well, especially those mothers of "angel children." Very recently, we learned of a young girl who was just diagnosed with neuroblastoma and passed away, both within this past week, despite having appeared to have been a healthy two year old last week. Every single day is a blessing. The following is called, "Surviving a Child on Mother's Day," written by Erma Bombeck a few years ago:

"If you're looking for an answer this Mother's Day to why God reclaimed your child, I don't know. I only know that thousands of mothers out there today desperately need an answer as to why they were permitted to go through the elation of carrying a child and then lose it to miscarriage, accident, violence, suicide, disease or drugs.

Motherhood isn't just a series of contractions; it's a state of mind. From the moment we know life is inside us, we feel a responsibility to protect and defend that human being. It's a promise we can't keep. We beat ourselves to death over that pledge. "If I hadn't worked through the eighth month". "If I had taken him/her to the doctor when he had a fever". "If I hadn't let him use the car that night", "if I hadn't been so naive, I'd have noticed he/she was on drugs or needed help with depression."

The longer I live, the more convinced I become that surviving changes us. After the bitterness, the anger, the guilt and despair are tempered by time, we look at life differently. When I was writing my book: "I Want To Grow Hair, I Want To Grow Up, I Want To Go To Boise", I talked with mothers who had lost a child to cancer. Every single one said that death gave their lives new meaning and purpose.

And who do you think prepared them for the rough, lonely road that they had to travel? - their dying child. They pointed their mothers toward the future and told them to keep going. The children had already accepted what their mothers were fighting to reject. Even those children who died a sudden death are able to spiritually touch their parents and help them live on.

The children in the bombed-out nursery in Oklahoma City have touched many lives. Workers who had probably given their kids a mechanical pat on the head without thinking that morning were making calls home during the day to their children to say, "I love you."

Joy and life abound for millions of mothers on Mother's Day. It's also a day of appreciation and respect. I can think of no mothers who deserve it more than those who had to give a child back.

In the face of misery they ask, "Why me?" but there is no answer. Maybe they are instruments who are left behind to perpetuate the lives that were lost and appreciate the time they had with their children. They are the ones who help pick up the pieces when tragedy occurs and others have lost their children."

~*~*~*~*~*~*~*~

Love, Peace and Comfort to you all this Mother's Day.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, May 8, 2004 9:06 PM CDT

Hi Everybuddy!

Today Chris spent most of the day outside. He endured a very early (for a Saturday, anyway) morning wake up call since he and Dad joined Mom and her Army Reserve team during its annual family day. Mom introduced her team to volksmarching, which we haven't done as a family in quite a while. We hiked 10 km (6.2 miles) around St. Petersburg. Aside from the physical training benefits of a long walk and adjusting our bodies to the increasingly warmer and more humid weather, it also provided a good way for all of us (family members and Reservists) to get to know each other better. Chris had a good time (he still rides in a stroller most of the way since he still doesn't have the stamina for such a long walk) as he either played with his GameBoy or read a book. The weather was perfect: sunny, warm but not brutally hot and with a gentle cooling breeze.

After lunch with the entire group, Chris and Dad broke away to shop for shoes before heading home, leaving Mom and her team to do the administrative portion of their work. Chris took a break and watched TV after calling Greg to see if he could come over and visit (unfortunately not today). Mom got back from drill just early enough to see Chris get into the pool. This is the first time that Chris spent time in the pool by himself. Dad and Mom were both in the lanai area, but not swimming. Chris very ably kept himself amused by inventing a few single person games and trying to stay away from Dad, who was armed with a garden hose (Dad was actually watering all of the surrounding garden beds). Chris loved getting sprayed, even though the temperature of the water was even cooler than the 76 degree pool water (that is cool enough). Also, Chris spoke briefly with Grannylin and his friend Bobby.

Medically, things went well but for the need for Zofran after making the trip to the hike's starting point, and again later after dinner. Chris had some energetic spurts today, especially when he was in the water.

Joke of the day -- (thanks Uncle Tom, and dedicated to next door neighbor, Hershey D. Cat) -- What's it called when a cat sues another cat? A claw suit.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, May 7, 2004 9:45 PM CDT

Hi Everybuddy!

Today was a repeat of every clinic day thus far this week: Chris' platelets had plummeted again, now down to 12. This was despite both Monday and Wednesday's 11 unit each platelet transfusions. The fact that it happened again got the doctor's attention. This time she ordered Chris back for yet another platelet transfusion, and asked him to stick around for an hour afterwards for a post-transfusion blood test. The second blood test was meant to determine whether Chris' body is completely trashing every platelet transfused into him (thankfully, it's not). So, today turned into yet another "platelet day," which made it another long clinic day and caused Chris to miss the retake of his class picture and all of the Friday Fun activities. Chris' blood first blood test results were: white blood cells dropped to 1.9 (normal: 4.0 - 12.0), hemoglobin dropped to 9.8 (normal: 11.5 - 14.5), platelets dropped to 12 (normal: 150 - 450), while his ANC dropped to 700 (normal: 1400 - 7400). Since the doctor ordered a post-transfusion blood test, Chris had to miss some of his afternoon at school.

While waiting for his morning blood test, Chris managed to work his way into another family playing Uno. Their daughter, another neuroblastoma patient, is younger than Chris, who won the first game. Dad warned them that Chris knew how to play the game. They all had a good time though. That mom won the second game. The girl will soon be going to New York to have her tumor operated on, so Dad gave them the low-down on New York operations and contact information.

Chris did get to school, but only for two hours. Dad linked up with him at the PE field, where the kids were playing a new game that Chris loved. There is a big ball in the center of a square (a team of students formed outside each side of the square). A team lost by having the big ball roll over its side. The kids loved it, too. After a quick stop at McDonalds for some chicken McNuggets, the guys dutifully returned to the clinic, where Chris passed the time watching a videotape, "The Return of the Mummy." He thinks it's great because it's both a "horror" picture and a comedy of sorts. Chris received another large platelet transfusion. He had no hives nor fever this time. He also was able to play with the same girl with whom he played Uno earlier since she was still there, receiving both red blood and platelet transfusions. The two kids played a spirited game of "Connect Four." A nurse took Chris' place for a game and was decidedly beaten by the girl. Chris cracked up everyone when he told the nurse that he expected it.

Chris' second blood test results, after the transfusion, were both good and confusing: white blood cells rose to 2.5 (normal: 4.0 - 12.0), hemoglobin dropped to 8.6 (normal: 11.5 - 14.5), platelets rose to 92 (normal: 150 - 450), while his ANC rose to 1100 (normal: 1400 - 7400). A platelet level of 92 is great, and the medical folks think that it'll probably hold over the weekend for the most part. What was curious was the big gains in white blood cells and ANC at the same time there was a big drop in hemoglobin. The only significant difference between both of today's blood tests was the platelet transfusion, so why the significant change in the other counts? Chris was released and we look forward to Monday's blood test results.

On the way home (Chris got out of the transfusion just as school was ending), the guys stopped by the new Boy Scout headquarters and Scout store. They were shopping for some "Thank-you" gifts for Chris' den leader and the den chief. Chris purchased a kerchief made of Kente cloth. Once at home, Chris had a snack since he was a little tired from the transfusion. He goofed off with Genie, then he and Dad played keep-away with her for a bit until Mom got home. He managed to get in a few dog piles with Genie on the bed. When Mom got home, Chris asked if we could go to Pizza Hut for scoring so high on platelets (yeah, like he studied for that test . . .). She said, "Yes."

Chris also spoke briefly with Grandma and Grandpa tonight. Since they called in the middle of a cartoon TV special, he quickly asked if they might not want to speak with Mom instead. Grandkids . . .

Medically, things went well but for needing platelets and one Zofran soon after arriving to school. The transfusion went rather well and the blood test better. He actually had a fun day today.

Joke of the day -- (thanks Uncle Tom -- for Aunt Jackie) -- Where do killer whales go to get braces? The orca-dontist.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, May 6, 2004 9:13 PM CDT

Hi Everybuddy!

Chris had a normal day at school and even got to go to the chess club meeting. He exuberantly reported to Dad (and then later Mom over the cell phone) that he had earned enough points to attend the final accelerated reading (AR) party. Now he says, he can just read for fun. Chris also did well on a long math test and he was happy about that, too.

After school, the guys headed over to the library, where Chris participated in the club's chess tournament. He won one game and conceded one game. The guys also spoke with the computer guy, who has already finished building the server for the student volunteer program. Chris wants to give it a "test drive." First, the volunteer software for the program must be developed. The guys headed right home after the chess club meeting.

Once at home, Chris had a snack and watched TV for a while. He also played with Genie for a bit, too. After watching TV for a little while, Chris and Dad went swimming. Today they invented a new game of tag: you have to "tag" the person by throwing some sort of pool toy at your opponent. Chris practiced his new "stunt thing" (Chris stands on Dad's hands and then Dad pushes him up into the air). Today, they hung out in the pool long enough for Mom to watch him do his "stunt" when she got home from work.

When Chris was asked about what he ate for lunch, one thing he admitted to eating was broccoli. That shocked us because he has had such an aversion to it in the past (not because of the taste so much as because it's just not a cool vegetable). Chris was neutral toward it today and couldn't remember if it was cooked or not. Having said that, he "gagged" his way through eating a third of a cup of mashed potatoes at dinner. Although mashed potatoes are a well-known favorite food for many kids, Chris has never wanted to even taste them. He survived.

Joke of the day (thanks Uncle Tom) -- What do you get if you cross a snake with a pie? A pie-thon.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, May 5, 2004 9:41 PM CDT

Hi Everybuddy!

We had a real surprise today: Chris' platelets had plummeted to 14, even though he had just received a large 11 unit transfusion on Monday. Today turned into another "platelet day," which made it another long clinic day for Chris. Things went quite well in the morning up until he was poked with the lancet for his regular blood test. Blood just started dripping (normally his finger needs to be squeezed in order to get a few drops for the test). Now that in itself isn't a definitive test since it is possible to poke a blood vessel or something in the finger, but dripping blood as soon as it is poked isn't typically a good sign. It wasn't today since the platelet level was so low. Other than that though, Chris' counts pretty much rose. His blood test results were: white blood cells rose to 2.1 (normal: 4.0 - 12.0), hemoglobin rose to 9.9 (normal: 11.5 - 14.5), platelets dropped to 14 (normal: 150 - 450), while his ANC rose to 800 (normal: 1400 - 7400). The platelet count won him an invitation to return for more platelets, although today he had to come back during the morning hours since the doctor wasn't going to be present in the Tampa clinic in the afternoon.

The guys arrived at school while Chris' class was at the library picking out a free book under the "Reading for Life" program. Dad spoke to Chris' teacher to learn about his homework and to let her know that he'd be picking Chris up early for the platelet transfusion. Chris and his classmates then went back to their classroom, where they took a math test. When Dad picked up Chris, some of the homeroom mothers were there helping the kids make teacher appreciation gifts for their absent teacher.

After a short stop at McDonalds for some chicken McNuggets, the guys headed back to the Tampa clinic. Chris spent the time watching a new videotape, "Peter Pan." It is a very action-packed version of the story. Chris received another large platelet transfusion of 11 units. Today, he had no hives nor fever. The infusion rate was a little slower than Monday's.

On the way home (Chris got out of the transfusion just as school was ending), the guys stopped by the new Boy Scout headquarters and Scout store. They also went to see the new aquarium that had been installed by one of the nurses' husbands. It looked great. Chris also got some leather craft projects. He made Mom a nice looking neckerchief holder (she doesn't own a neckerchief, but she's sure that she'll find a use for it).

Once at home, Chris had a snack since he was a little tired from the transfusion. He managed to get in a few dog piles with Genie on the bed. After watching TV for a bit and letting his head clear from the premedications used for the transfusion, Chris and Dad went swimming. Today they tried something new: Chris stood on Dad's hands and then Dad pushed him up into the air. He got enough air to do one complete somersault. Surprisingly, he was better in doing backwards flips. He loved it even when his mask would come off.

Not long after they got out of the pool, they got a call to come over to Chris' homeroom mom's house so that Chris could finish up on the class present for the teacher. He had to make a hand and thumb print and provide a picture of himself. The thumb will have a face drawn on it at a later date. The teacher will love the presents that the class is making for her.

Medically, things went well save for needing platelets. The transfusion went rather well and we thanked the doctor for hanging around so Chris could receive them.

Joke of the day -- What do you get if you cross an elephant and a kangaroo? Big holes all over Australia!

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, May 4, 2004 9:23 PM CDT

Hi Everybuddy!

Today was terrible Tuesday. It turned out to be a nice one although Chris still would like the pace to slow down. (It will soon, since both his religious education classes and Cub Scouts are nearing the end of their school year.) As for last night, Chris' slightly elevated temperature did not climb (fevers require an automatic three day stay at the hospital, due to the higher risk of infection and complications therefrom). Chris awoke in good spirits and made it to school without the benefit of any additional medication, and without stomach cramps or diarrhea. The guys did a "pony express drop off," which was the last that Dad heard of Chris until it was time to pick him up at the end of the school day. Apparently after lunch, Chris and the other members of his newly formed recess "band" (which sings kid songs without accompaniment) held auditions; it looks like they might add two new girl singers.

After school, Chris made out like he needed to get a test paper signed due to a bad grade. Well, it turned about that all of the students needed to get their test papers signed by a parent. In fact, Chris got an A+ on it. His teacher was on to his joke right away, but didn't say anything to Dad. Chris was so thirsty at the end of the school day that the guys headed right for home. He didn't have any substantive homework, so Dad and Chris worked on the requirements for the geologist pin that his Webelos patrol will be working on this month. Chris boxed up his pretty extensive rock collection and his one fossil. They also made some plans for an upcoming weekend get-together for the patrol at our house after school is out for the summer, so the kids can earn their sportsman pins and maintain friendships over the summer.

The guys then went to "God school." Chris sat with Greg and another boy who seemed pretty chummy with both Chris and Greg. Chris' highlights of the class were that the students each received a single decade rosary and they had pizza as a snack. The scout meeting took place shortly after "God School," and Chris' rock collection was a big hit. It had about every rock that they needed (except for a diamond or two).

When we finally got home, Genie was ready to play. We didn't do the conventional play thing with her. Instead, she decided to follow Chris around. She went into a tizzy after Chris started doing his porpoise imitation (which is quite good). She ran around like a mad dog, but would stop and listen to the porpoise sounds. We had a good time with that one, needless to say. Oh, Chris pulled the "test paper scam" on Mom, but with a little better result than with Dad -- in large part because Dad set her up earlier by indicating that Chris needed to explain to her what happened on the test.

Joke of the day -- How do you know that peanuts are fattening? Have you ever seen a skinny elephant?

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds. Becca, in particular, needs some extra special attention right now.

Love,

Chris, Alison and Pat

Monday, May 3, 2004 8:57 PM CDT

Hi Everybuddy!

As we guessed it would be, it turned out to be a "platelet day," and therefore a long clinic day for Chris. Things went quite well in the morning and Chris even got to play some cards with his friend Sam. Chris' counts pretty much dropped; his blood test results were: white blood cells dropped to 1.9 (normal: 4.0 - 12.0), hemoglobin remained at 9.7 (normal: 11.5 - 14.5), platelets dropped to 15 (normal: 150 - 450), while his ANC dropped to 700 (normal: 1400 - 7400). Not surprisingly, the platelet count was poor enough to warrant a transfusion. On a happier note though, Chris brought in some homemade brownies for "Nurses Appreciation Week."

The doctor examined Chris since he was supposed to start the chemo drug Temodar today. She decided to postpone that for one week in order to give his marrow a chance to recover a little more. She examined Chris' mouth and felt his liver (nothing unusual there). She and Dad also discussed possible causes of Chris' recent joint pain. She seems to think that it may be because of all the medication he has over these past 5 years. Long-term use tends to weaken joints (or at least that's what Dad thinks he heard). We now have things to ask Chris about when he is in pain. The doctor does not seem to think that the sporadic pain is a neurological problem.

The guys arrived at school while Chris' class was doing math. He received his interim report card today: he has pulled his math grade up to an A (also science, social studies, PE, art, and music). He is hanging on with "B's" in reading and writing. The highlight of Chris' "debriefing" to Dad about school was that he had a hamburger for lunch AND some Papa Johns pizza as thanks for being a peer mediator.

After school, Chris helped Dad collect all of the "stuff" that was used for the student volunteer program pilot test (Dad really needed his help too). After a short stop for a soda, the guys headed back to the Tampa clinic. Chris had finished his homework, so he opted to "veg" out in front of the TV and watch the Disney movie, "The Haunted Mansion." There was a kid there getting something for his cancer; he hadn't been able to see the movie yet, so he too was a happy camper. Chris had some problems with hives after his fairly large platelet transfusion (11 units). The platelets were transfused at a fairly quick rate, so next time Dad will ask to slow the transfusion rate down a bit. Chris did a good job of not scratching the hives. He was under observation for a while but the doctor felt comfortable with Dad taking him home.

The guys stopped by Toys R Us on the way home, where Chris bought another Harry Potter 3 LEGO kit. Once home, Genie got immediate attention from Chris. Chris walked Genie before he started working on his LEGOs. Mom got home just as Chris was finishing up. Chris then mentioned that he felt like he had a fever. Not to our surprise, he did have a slightly elevated temperature (he almost always seems to know). At bedtime, it had risen a bit more to about 99.3 F, so we'll check his temperature again a little later. It could be a post transfusion problem (or even a problem with him having lost a tooth and pulling it without benefit of an antibiotic). Although Chris acted like he did not feel well this evening, at bedtime, he smiled a crooked smile as he asked Mom whether he could skip school tomorrow based on the fever. Based on that alone, Mom thinks he's going to be just fine by tomorrow morning.

Medically, things were better for most things, but Chris required Zofran for nausea at breakfast. He didn't have any joint pain when he woke up this morning. But he woke up at about 11 p.m. last night complaining of left ankle and knee pain (he fell asleep after Mom put an ice pack on his knee, which she made when Chris said that his knee pain felt like "antibody pain") today.

Joke of the day -- Knock, knock. Who's there? Robin. Robin who? Robin the rich to give to the poor.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, May 2, 2004 9:46 PM CDT

Hi Everybuddy!

It was an interesting day for Chris, and it turned out much nicer than he initially thought that it would. Chris had a hard time getting in contact with any of his friends about coming over today; in fact, he had told Mom that he was probably going to be all alone again today and was feeling pretty down about that. Within about 15 minutes of saying that though, Chris got a telephone call from his friend, Greg.

Chris went to a nearly two hour Mass this morning -- nearly twice as long as usual because there were so many children making their First Holy Communion Sunday. Chris saw one friend there who was acting as an Altar Server, and his younger brother who was one of the First Communicants, but it was so crowded that he couldn't get over to say hello to them after Mass. During lunch though, Chris' luck changed. Greg called (although he accidentally said that he was Chris -- oops!) and told Chris that he could come over for a few hours. Chris was one happy kid! The boys played some video games on and off, but spent most of the time in the pool. After some initial water games, the two of them thought about making a home movie in the near future. The "working title" is dubbed, "Dark Danger." They don't quite have a plot yet, but generally seems to be about a bad guy, a good guy, a sea monster, and one of the three of them might have a mechanical hand. We don't know much more about it but they did practice some "stunts" that they thought might be cool in a movie. We guess that it doesn't hurt to get the "stunts" worked out before the story line, script, or storyboard. Oh well . . . Incidentally, Chris had signed up to take a couple of day camp weeks this summer, one of which is supposed to teach him how claymation movies are made.

Soon after Greg left, we hit the road to do the weekly shopping. Chris learned that he can't push a shopping cart filled with two forty pound bags of water softener salt (although he gave it a good try). Chris also helped out at the supermarket. He also actually thought that going to the "salad" restaurant for dinner might be a good idea for dinner (largely because it is located next to the comic book/trading card shop). Sadly, the latter was closed.

Medically, Chris had an almost normal day. He didn't require any special medications for stomach cramps, nausea, or diarrhea. He has developed quite a collection of petechiea (some of which look like purple freckles) and bruises, and he had a moment of breakthrough bleeding where he lost his tooth yesterday, so we know that he'll need a platelet transfusion tomorrow. (Looking back on it, we should have pushed harder for a platelet transfusion last Friday.) Theoretically, Chris' body ought to be making more platelets on its own since he's been away from chemo for over two weeks and he is off of G-CSF, but there is nothing particularly normal with the way Chris' marrow produces blood cells of any sort.

Joke of the day -- Why do dragons sleep during the day? So they can fight knights.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, May 1, 2004 9:37 PM CDT

Hi Everybuddy!

It was one of those days when Chris proved (again) that he can be a very useful kid. For him, it started with he and Genie sneaking (as much as a boy can "sneak" with a dog who's wearing a collar with jingly dogtags) into Mom and Dad's room while Mom was still "sawing logs." He almost made it to where Dad was working on the computer but not quite. Dad had them "sneak" out and Chris got some waffles for his efforts.

Today was a fateful day during which Dad started pressure washing the exterior of the house -- that is until the pressure washer started acting up. When Dad removed a poppet valve to see why it wasn't functioning, of course the tiny ball bearing had to fall out into the grass. Dad wisely called in Chris, who, armed with his spy gear metal detector, proved that the thing actually worked. No, he didn't find the bearing with it, but he did find some nails buried in the dirt under the grass. He tried hard to find the ball bearing though. Later, Dad found it, only to lose it again. Geesh. Chris then helped Dad hunt for it, this time using a large magnet. That, too, met with no success.

Chris spent his day mostly playing games as he wasn't keen on pressure washing the house with Dad or writing letter to medical insurance companies with Mom. He had a good time though and walked Genie periodically. Unfortunately, none of his friends were available to come over to play. We busted him loose in the afternoon to go see the new movie, "Mean Girls." Chris and Dad liked it, but Mom didn't really care for it.

Before going to the movie, though, Chris announced that he had a new loose tooth, and that he hadn't noticed that it was loose before then. Only about 10 or 15 minutes later, Chris came back and showed Mom the bloody mess that it had become (his platelet count was just above the transfusion point yesterday). It was actually loose on one side and bleeding, but when Dad tried to pull it, it felt like the tooth was still entrenched on the other side. Chris was told to settle down with some gauze pads and try to stop the bleeding. However, with the gauze in his mouth, Chris continued to twist his tooth until it came out. He even managed to stop the bleeding (there was a fair amount of blood, too). He definitely earned a tooth fairy visit for this tooth! Although he hates seeing blood, Chris kept his cool and dealt with the situation on his own.

Before bedtime, Mom and Chris played a video game. True to her novice level, Mom still stinks at video gaming. Somehow though, she managed to win the video "speed bingo" game. Both she and Chris were slightly shocked. Speaking of slightly shocked, Chris was impressed with the personal story of today's Kentucky Derby winner, Smarty Jones, who almost died a couple of years ago and continued his undefeated racing record even today.

Medically, things were a bit smoother for Chris; he needed Benedryl for a sudden attack of stomach cramps about an hour after lunch. He also had more cramps after dinner, but managed to handle them without needing any medications. His tooth came out with more blood than most people would expect to see, but Chris got it under control by rinsing and spitting, and more importantly, by keeping firm pressure on the socket with a series of sterile gauze pads. (Some of you may remember that a few years ago, earlier in Chris' fight against neuroblastoma, he bit the side of his mouth when his platelet level was very low. He was hospitalized for two weeks; at that time, his platelet level was at only 2, and his body seemed to be rejecting the transfused platelets. That incident came to mind today.).

Joke of the day -- (especially for Lori) -- What has beautiful hair, a pretty face, two arms, a fish's tail, looks like a mermaid, but isn't a mermaid? A photograph of a mermaid.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, April 30, 2004 9:15 PM CDT

Hi Everybuddy!

Chris made it through the clinic today without having to have the usual Friday afternoon return visit for a platelet transfusion, but just barely. The guys also got the prescription for Chris' next chemo, Temodar, which he's due to start on Monday. Things went well at the clinic. The guys got in a few hands of Uno (Chris won the majority of hands). Chris' blood test results were: white blood cells dropped to 2.3 (normal: 4.0 - 12.0), hemoglobin rose to 9.7 (normal: 11.5 - 14.5), platelets dropped to 24 (normal: 150 - 450), while his ANC dropped to 1100 (normal: 1400 - 7400). Chris was allowed to attend school and was told to be ready to start chemo and get platelets on Monday.

Chris saw some of his friends but didn't get to play with them. He was stuck with Dad. After the clinic visit, Chris was first inclined to stop by Burger King for a mini-breakfast, but decided en route to go right to class for the second time this week. Chris also took some accelerated reading (AR) tests today, gearing up for the upcoming AR party. After school, Chris and Dad checked on the construction of the new server, hen helped jump start one of the PTA Mom's car. Chris helped keep her four kids occupied (and was she thankful about that!). The guys then headed over to the store for new containers of propane gas for the grill and mosquito trap. Chris spent some of his savings on a couple of new Harry Potter LEGO kits.

Later in the afternoon, Chris called Grandma and Grandpa, whose earlier call had been missed. When the conversation started to move away from "kid essential" information, Chris asked Grandma and Grandpa if they'd like to talk to Genie (normally he says Dad when he wants to get off the phone). That was different, and it worked.

After a while, our friend Les arrived for dinner. The two played a couple of games of chess with Les doing some coaching. The first game was spirited, and Chris did a pretty good job of trying to strategically place his pieces on the board. They also had a macaroni and cheese eating competition (Chris won that one -- no surprises there), and worked out with Chris' karate batons. Chris devastated Les with the batons. After Les went home, Dad told Chris that Les was once a trained policeman with the batons and was really quite good with them -- gulp!

Medically, things were still bumpy and Chris needed some Zofran and Imodium at least once each today. He didn't require any medications from the school nurse, however. He was in good spirits, but his body is pale and covered in bruises (primarily on his legs).

Joke of the day -- What does a pickle say when it wants to play cards? Dill me in.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, April 29, 2004 9:02 PM CDT

Hi Everybuddy!

Chris had a normal day at school. He told Dad that the highlight was playing horse shoes at PE class. He said that math and writing weren't too bad (if he had to do them). His day had a pretty mild start today although Chris required an Imodium before breakfast.

After school, the guys headed over to the library, where they spoke with the computer guy who has already started to build the server for the student volunteer program. Chris hadn't seen the "guts" of a computer too often. Chris also got a sneak preview of the school's art show. Chris was allowed in there early because Dad had spent most of the day there helping to set it up and hang the art work. For an elementary school, some of the art was impressive. Later in the evening, we met Mom back at the school so she could have a chance to view all of the students' artwork. Chris had three pieces: a mask, a basketweave pottery piece and a painting (probably using Tempora paints). The mask was basically black with gold glitter (sort of a cross between a Greek mask and a Mardi Gras mask). The painting was a classic still fruit piece. Chris' art skills have improved a lot since last year.

Chris' appetite was improved today. He dabbled with a few bites of cereal at breakfast, had a school lunch, a dunch (chicken McNuggets), and nibbled on hamburger, corn on the cob and peas at dinner. Medically, things went much better (after, of course, the Imodium needed this morning). Chris had one bout of diarrhea.

Joke of the day -- What was the first thing the queen did on ascending to the throne? Sat down.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, April 28, 2004 9:47 PM CDT

Hi Everybuddy!

Today turned into a long school day for Chris and Dad. This is despite Chris having arrived at school late due to having to go to the Tampa Clinic for a blood test. Chris did not bump into any of his usual friends at the clinic and things went pretty quickly. Chris' blood test results were: white blood cells dropped to 4.4 (normal: 4.0 - 12.0), hemoglobin rose to 9.6 (normal: 11.5 - 14.5), platelets were 45 (normal: 150 - 450), while his ANC dropped to 2500 (normal: 1400 - 7400). Nonetheless, the ANC count was sufficiently high to enable Chris to discontinue his G-CSF shots.

The guys did have to wait a bit for the doctor who wanted to speak with Dad. She was able to sit down with the radiologist who had read Chris' most recent MIBG scan. Apparently Dad's theory for uptake in the left lobe of the liver wasn't too plausible, but the radiologist did have another theory that both doctors think is possible. The theory basically is that the radioactive isotope that the MIBG senses can also be "absorbed" in organs that have undergone radiation therapy. Chris' liver was irradiated after the relapse. We'll check this concept out with Chris' doctors in New York, too. It seems to us that there are a few "disconnects" for it to be a perfect reflection of activity in that part of his liver. Yet, it is a more promising theory than some we've heard, provides interesting food for thought, and it will keep us going in this chemo regime for a while longer.

After the clinic visit, Chris was first inclined to stop by Burger King for a mini-breakfast, but decided enroute to go right to class. Chris has been eating so poorly at breakfast that Dad would have stopped. When Dad waited outside of Chris' classroom at the end of the school day, some girls came out and told Dad about a fun thing that Chris did during recess. He, along with one of his friends, apparently gave a "rock concert" to some first graders. They sang a song that parts of the class had written, and danced around like rappers. The girls said that they were a big hit, and even had a "producer" and some "stage security." We're not sure what it was like, but it was definitely a hit with the kids who saw it.

After school, Chris and Dad spent another four hours working on things to wind-up the student volunteer pilot test, helping to set up the school's art show and then going shopping with the technology guy for parts to build a server for the school's volunteer program. Whew! Since Chris had received a dose of Benedryl before the end of school for some "itching" problems, he fell asleep for a while waiting in the library. One of the librarians remarked how incredible it was that he could sleep in that position. Like any battle-hardened veteran, he's learned to sleep anyway, anywhere, anytime that he can. Chris (and Dad) were happy when the parts were finally dropped off at the school.

The guys got home so late that Mom had even arrived home before them. It was too late to cook, so we went out. Chris gave our server a happy face pin and also one to a bus boy that we've seen working diligently for years (at several restaurants). The guy really liked his pin (apparently bus boys don't get pins for good work like the servers do).

Medically, things were ok, but Chris required some additional medications throughout the day (Benedryl and Zofran), including at bedtime (when Chris felt not so good). Dad will be talking to the doctor about this on Friday. It isn't as severe as it has been in the past but the tummy troubles has lingered longer this time. Aside from the usual post-chemo issues, we are aware that sometimes kids who have had abdominal surgery can develop problems even years after the surgery; we want to make sure that there isn't anything like that going on.

Joke of the day -- Why did the chicken get taken out of the dodge ball game? For persistent fowl play.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, April 27, 2004 9:07 PM CDT

Hi Everybuddy!

Today was a class (group) picture day at school. Chris made it to school without the benefit of any additional medication and without stomach cramps or diarrhea. He was sort of psyched about going to school this morning since his substitute teacher is a former Pittsburgh Steelers (and Kansas City Chiefs) football player who tells the kids all sorts of cool stories.

Chris also bumped into Dad a couple of times at school, once while getting his class picture taken. Dad was doing a computer search for some missing school property on a computer in the library (which is not as quiet as one might think). In all fairness, class pictures were being taken in the library and the students were really excited for the most part. Chris at least did not ask Dad if he could help find a book (like several kids did). Ha! Librarians must be patient people.

After school, Chris asked for a "dunch," but when the guys went to McDonalds, it was really crowded. So, Chris opted to just go right home. He didn't have any substantive homework, Dad has him working on a project for school. After walking Genie, Chris got right to work. He didn't work long though since Chris had an appointment with the priest who helped him with his Cub Scout religious award. After working with Chris (but before Chris received the award), the priest mentioned to Chris that although he's helped some kids work towards their awards, he's never actually seen one. Today, Chris fulfilled the priest's curiosity and brought his two awards in for him to see. The priest was impressed, not only with the awards but also that Chris remembered his comments. Chris also gave him a happy face pin, which the priest really liked (the priest smiles a lot).

The guys had a few minutes before "God school," so they walked over to the nearby used bookstore. Chris found two books: a Young Indiana Jones book and a "Choose Your Own Adventure" book (one of his favorite types of books). They then hustled back to over to church, where Chris linked up with Greg and then went to class.

Genie came with Dad after "God school" to pick up Chris; he was elated. She was also very happy to see him. After he walked her at home, the two goofed off for a while before Chris finished up on his special project. After Mom got home, Chris (and the rest of us) enjoyed Dad's Italian sausage and spaghetti dinner. His appetite is still diminished, and his bowels are still in somewhat of an uproar though. Because there was no Cub Scout meeting tonight, there was plenty of time for goofing off and Chris, Mom, and Genie had a mega-dog-pile on the bed.

Joke of the day -- What's the difference between a train & a teacher? A train says choo-choo & a teacher says "Spit out your gum."

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds. Becca, in particular, needs some extra special attention right now.

Love,

Chris, Alison and Pat

Monday, April 26, 2004 9:47 PM CDT

Hi Everybuddy!

The day turned into a long clinic day for Chris. For some reason, things at the clinic went a little slower than normal. Chris got to play a little of his special card game with Sam, and later, the card game "War" with Dad. Chris' counts are still hanging in there although he did get invited back this afternoon for a platelet transfusion. Chris' blood test results were: white blood cells were 5.5 (normal: 4.0 - 12.0), hemoglobin rose to 9.5 (normal: 11.5 - 14.5), platelets dropped to 12 (normal: 150 - 450), while his ANC rose to 3300 (normal: 1400 - 7400). The platelet count was poor enough to warrant a transfusion. Chris also saw his friend affectionately known as "Taylor 2." Taylor loved Boggy Creek (from her time at the family camp) but doesn't want to go there alone this summer. Her parents wished that she would. Chris came in and heard that discussion and tried to persuade her to go. We'll see.

After the morning clinic session, the guys went right to work. Chris helped Dad deliver a thermofax machine that Dad had rebuilt for the school. Dad then dropped Chris off only to learn that he has a substitute teacher who happens to be a retired professional football player. Chris could not remember his name but the guy said that he'd sign autographs before he leaves this week. Chris and the class seemed to like him.

After school, Chris helped Dad with some "stuff" for the student volunteer program and then sat by while Dad helped locate some misplaced school property. Chris thought it was good detective work kind of fun. After a short stop for a soda, the guys headed for the clinic. Chris was happy to learn that "Roommate Roy" was there for a platelet transfusion, too. The two sat and watched movies. Occasionally Roy tuned into the channel Chris was watching, the older movie "Around the World in Eighty Days" (he's watching it for school). The transfusion went like clockwork and the highlight of the visit, according to Chris, was sneaking up on Dad after the transfusion was completed, when Chris was returning from going to the bathroom.

Once home, Genie got immediate attention from Chris. Chris walked Genie before he and Dad started on homework. It was a bumpy math homework session today but they came away with the teaching objective. Mom walked in just as they were finishing up.

We had to get some materials for a secret project so we went shopping and ate dinner out. We learned (to our surprise) that Chris has a following of servers at the restaurant we were at. Several servers came over just to say "Hi!" to Chris. He was happily surprised and gave out a few happy face pins. The manager ended up giving Chris one of the restaurant's pins that are usually given to its employees for a notable effort. Chris jauntily strutted out of the restaurant with his chest thrown out, showing off his new pin, saying that he was a certified good customer. After a brief stop to get the materials we needed, we went into a huddle at home to finish the work on the secret project (but for a little touch of "Chris" needed before it is truly completed).

Medically, things were better but still not normal. Chris got some Benedryl for stomach problems. He also had some Imodium after a bout of diarrhea at school.

Joke of the day -- What flies around the school at night? The alpha-bat!

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, April 25, 2004 9:25 PM CDT

Hi Everybuddy!

Chris had a good sleep last night, so good in fact that it took Mom, Dad, and a dog to wake him up. From Chris' perspective, there really wasn't so much going on today. He went to church, ate pizza for lunch, and spent his afternoon goofing off with Genie, riding his bicycle, playing video games and reading. He pretty much was on his own for a large chunk of the afternoon because Mom and Dad were busy with reorganizing the garage (there's a lot more elbow room in there now, although there is also still a lot of stuff). He generally felt well and was in a good mood, although the stomach cramps surface from time to time. He was fine with having some "down time" today. Interestingly though, at dinner, Chris asked about what it was like when he was first diagnosed with neuroblastoma. He doesn't really remember the "early days." How nice it would be if he can come out of this someday with only the happy memories.

Joke of the day -- Why did the teacher write the lesson on the window? She wanted the lesson to be perfectly clear.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, April 24, 2004 9:29 PM CDT

Hi Everybuddy!

Last night was an interesting night and just shows how patient Chris can be. His friend, Greg, was here for a sleepover, and we know that sometimes Greg gets lonesome for home. His parents really wanted him to give this sleepover a fair try. (Greg has stayed over here before on two occasions previously. On one occasion he made it through the night and on the other he didn't.) Greg had a rough night last night. Despite Chris being very tired, he worked with Greg, along with Mom and Dad to get Greg throughout the night. After a very late night movie, Greg decided to try and get to sleep one more time; this time he succeeded. Dad ended up sleeping in the living room so that Greg knew "support" was nearby. Dad dubbed Genie a "golden retriever" for the evening (Greg's dog is a golden retriever). Chris said that she dutifully slept next to Greg's cot through the night.

Despite the late night, the guys started this day early. They were surprised when Dad said, "Boo!" as they came into the den. After a little video game action, the boys had breakfast and then waited an hour before going into the pool. During that hour, Chris got his requisite G-CSF shot. Now Dad thought that Greg would have moved out during the shot, but was surprised when Greg hung around to offer Chris moral support (although he didn't volunteer to substitute in for him).

The time in the pool was cool (both literally and figuratively) but fun. Dad got them both in wetsuits to keep them a little warmer during the early morning swim. The boys invented a new game which they enjoyed. Dad couldn't quite make out the rules for the game that used our little two man raft. It had something to do about sharks. Oh well, he'll learn eventually. Soon after swimming, Greg had to leave for a day of baseball.

After a bit, we left too in order to do a bit of shopping with Chris (now passed his second dose of G-CSF) for some things for the house. We stopped by one of his favorite pizza places (that isn't bad) near one of the stores we needed to visit. Then we moved on down the shopping center to a used sporting goods store, where Chris used some funds to purchase a personal sized jogging trampoline, which he enjoys hopping on just like Tigger. His plan: train in the great game of hackey-sack. Once it was home, he bounced on it for a bit, but his stomach is still a bit out of order due to the recent chemotherapy. The bouncing caused some cramping, so he had to stop. Chris anticipates getting back out there on it tomorrow or in the near future.

We were home for a short break before linking up with our friend Cate at the movie theater, where we saw the new movie, "13 Going On 30." We enjoyed it; Jennifer Garner did almost as good a job playing a "kid" as Tom Hanks did years ago in the movie, "Big." Chris liked it and it seemed that he could relate to it. After the movie, we were invited to dinner with Cate and her Dad at a barbecue place. Dinner was really nice, especially since we hadn't seen Cate's Dad in a while. It was obvious that Chris didn't get enough sleep last night since he nearly dozed off at the restaurant while waiting for the food to arrive. He never does that around Cate, not even at the hospital. We're happy to report that he had a shrimp dinner tonight and not a shrimp pizza.

As we prepared to leave the restaurant, Chris had his tongue hanging out of his mouth. So we bet him that he couldn't keep his tongue out all the way home. Actually, he didn't, but we didn't go directly home either, so he had held it out over a half hour. We declared him the victor. That kid can really gut it out when he puts his mind to it (just try sticking your tongue out for a half an hour). It's not one of his finer skills though. We let him off the hook since we had to go to one more store before going home, and his tongue really was getting very dry.

Medically, things went well but for Chris getting stomach cramps once in the morning, once after bouncing on the trampoline, and once at night just before bed. Mom gave him Benedryl, which settled the matter.

Joke of the day -- What is the study of back-to-school shopping? Buy-ology.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, April 23, 2004 9:26 PM CDT

Hi Everybuddy!

Chemo has finally caught up with Chris: his ANC dropped below the acceptable level for him to go to school, so he headed for home after this morning's clinic visit. Chris' blood test results were: white blood cells were 1.6 (normal: 4.0 - 12.0), hemoglobin dropped to 9.2 (normal: 11.5 - 14.5), platelets were 50 (normal: 150 - 450 -- thanks to Wednesday's infusion), while his ANC dropped to 400 (normal: 1400 - 7400). The counts were poor enough to keep Chris from going to school and to cause him to start the G-CSF leg shots immediately.

Chris did actually stop by his school (masked up, of course) since he and Dad had been baking a lot of brownies over a few days for his class' Friday Fun Day snack. We found Chris' classmates, along with the other fourth and fifth grade classes, in the school's open air pavilion, watching someone doing an imitation of Ben Franklin. Chris was a little sorry that he couldn't go to school today since he was really looking forward to the brownies (and handing them out) and seeing the show. Having said that, he was all smiles when he was told by clinic staff members that he couldn't go to school.

Once home, Genie walked the boy and then they settled in to playing some games, watching some movies, and checking e-mail (which is getting busier all of the time). Chris didn't have any particular medical problems; after his Emla cream kicked in, he got his G-CSF shot out of the way. He also got a call from Greg letting him know that he could come over for a sleepover tonight (Chris and Dad had cleared that idea with the medical team before they left the clinic).

As you may remember from past updates, Chris sometimes, quite sensibly, wears pull-ups when dealing with the post-chemo diarrhea problems. Apparently absentmindedly, Chris put one in with the dirty clothes rather than throw it away. No one noticed it and it went through a cycle in the washing machine. What a mess! After taking apart the washing machine in order to remove the many little pieces of "stuffing" from the now disintegrated pull-up, Dad had to dry the clothes outside before he could shake all of the "stuffing balls" off of them. What another mess! Chris dutifully put on hearing protection, then vacuumed the patio area with the shop vac, where Dad had been beating the stuffing out of the laundry. Soon after Chris started with that work, Dad overheard him singing loudly while he was vacuuming. He said that he's learned his lesson about washing pull-ups.

Greg showed up around 4:00 p.m., and the boys bounced from one game to another (as is their usual way). All went well until they decided to watch a DVD. Chris couldn't find the particular one that they wanted to watch. That prompted Dad into helping look for it. He checked out some game boxes (in which DVD could fit) and there were no games to be found either. For a while, they couldn't find about thirty game disks until Greg accidentally knocked over a box of spy gear. Both kids groaned since it was just one more thing to go through and pick up (Dad had made it clear that the fun would restart after the video games were found). Lo and behold, in the spy gear box was a CD carrier containing all of the missing games. Dad eventually found the missing movie, which had been misfiled in Chris' desk. All's well that ends best. (Chris thanked Greg profusely.)

When Mom called in just before she left the office tonight, she was told what the boys vote for dinner was. It came as absolutely no surprise: pizza. So, pizza it was. Although all of Chris' counts have dropped this cycle, his weight thankfully hasn't. The boys had fun tonight, mostly watching movies or playing video games or with Genie, and settled in for bed at around 10:00 p.m. They seem to think that they'll wake up at around 6:30 tomorrow morning for a 7:00 a.m. swim. Mom's not sure that she'll be awake for that one.

Medically, things went well but for Chris getting stomach cramps after dinner. Mom gave him a dose of Benedryl, which settled the matter.

Joke of the day -- What's the difference between one yard and two yards? Usually a fence.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, April 22, 2004 10:15 PM CDT

Hi Everybuddy!

Chris and Dad had a nice day together. Chris attended a school sponsored field trip to "Cracker Country," a permanent exhibit at the Florida State Fairgrounds (located in Tampa) about the early pioneer days in Florida; Dad was one of the parent chaperones for the trip. "Cracker" is the slang term for such pioneers, originally describing Florida cowboys who would extract some of Florida's many cattle from grazing amongst the trees and palmettos by cracking their whips -- thus the name. To this day, it still refers to long-term Florida residents (and Florida remains a leading cattle producing state).

The class spent over two hours there and still was not able to see all there was to see. The students learned quite a lot about life in early Florida. Among Chris' favorite exhibits were those where the students could play with some barrel hoops, the country store, and the one concerning with the many uses of corn, explained by an old crusty gentleman whom the kids adored. The weather was absolutely perfect for such an outing. Chris was very impressed by it all and wants to go back and see the last third that he missed this time. (We'll probably have to wait until the state fair in February.) Chris class was pretty well behaved so Dad even was able to enjoy himself.

After school, the guys headed over to the library, where they waited to take the computer guy over to a store to pick up things needed to build a server for the student volunteer program. After an hour's wait, they sadly learned that the purchase order hadn't been signed -- bummer. Chris asked for "dunch" since by then he was both thirsty and hungry (even though he had a good picnic lunch). Once home, Chris finished his meal and then goofed off a bit with the dog. He also watched the movie, "The Medallion" before changing into his Webelos uniform. We met Mom at the Webelos meeting, where Chris ate a slice of pizza (a tradition with this pack).

Medically, things went much better after a rough start this morning. Chris didn't have any problems the whole day, but for a little stomach cramp at bedtime. He didn't require any medications until bedtime, when he took a dose of Benedryl to calm his belly.

Joke of the day -- What do you get when you add 13 hospital patients to 13 hospital patients? Twenty Sicks.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, April 21, 2004 9:17 PM CDT

Hi Everybuddy!

Chris and Dad had another long clinic day. Chris' day started off a little rough, again. To work out the kinks, he needed some Benedryl, Imodium and Zofran. Needless to say, he didn't eat much. However, when Chris got on the scale today, we were happily surprised to see that he hasn't lost much weight either. Chris and Dad went to the Tampa clinic for the usual blood test. His blood test results were: white blood cells dropped to 1.7 (normal: 4.0 - 12.0), hemoglobin rose to 10.3 (normal: 11.5 - 14.5), platelets dropped to 19 (normal: 150 - 450), while his ANC dropped to 600 (normal: 1400 - 7400). The counts were good enough to keep Chris from having to start the G-CSF leg shots immediately and good enough for him to be able to go to school. They were also poor enough to get an afternoon invitation to return to the clinic for a platelet transfusion.

Chris had a great time while at the clinic. While waiting to get called in for their finger pokes, Chris and a boy named Sam played the card game that they both like. Afterwards, while waiting for something else, the two were joined by Dad, then they played a hand of Uno.

Typically, when Dad drops him off at school, Chris has to hustle to make up for work that his classmates have already done in his absence. The teachers are very nice about making time for this to happen. Sometimes, like today, Chris does extra work during homework and is actually comes out ahead in some subjects.

As soon as Dad picked up Chris this afternoon, Chris asked for "dunch," so it was off to McDonalds. One of the kids working there hadn't gotten his "Chris report," so he asked (and got) an update (at the drive-though window). The guys then headed off to the clinic where Chris' mediport was accessed before Chris received the platelet transfusion. The transfusion went well and having already finished his homework, Chris watched the Disney movie "The Kid." He was asked to stick around so that the doctor could examine him. He looked great and his rash of bruises are clearing (slowly). She (another doctor than the one with whom Dad had been speaking earlier this week) was also very pleased with his test results. She determined that it's ok to increase the time between cycles of chemo. He will now have two weeks off between cycles for recovery purposes; actually, that has been happening anyway because of low blood counts. Dad also talked with her about treatment options. There is one more result pending for which she is waiting before calling up to New York for a consultation. She also noticed that Chris got some post-transfusion hives, but he handled it without any additional medication.

The guys stopped for some eggs (they're baking brownies to share with Chris' class on Friday) and then headed on to home where Chris walked his freshly groomed dog. She went to the doggie beauty parlor and even had her teeth cleaned. They gave her a complementary American flag bandana. The guys then gave her a good workout playing keep-away. She's getting craftier all of the time.

Chris found a couple of pleasant surprises in the mail. He got a really neat homemade card from some kids who wanted to send pediatric cancer patients "thinking of you" cards. He also received an Easter card from honorary "Aunt" Cathy. He is always amazed at the variety of happy face stickers she finds to put on the cards she sends him. Today's were happy face with rabbit ears. We've never seen anything like that so he's thinking that she must "know" the happy face guy. Thanks "Aunt" Cathy. Coincidentally, the cards from the cancer center also had some unique happy faces.

Mom called in and asked if we could meet her for dinner (twist our arms) and so we did. Chris read Sherlock Holmes while waiting for dinner, then gave the server a happy face pin, which he gladly wore. Chris did not eat well, even though it was one of his favorite restaurants.

Medically, things were still rough, although Chris has seen rougher. Hopefully, spreading the chemo cycles out and staying with the pre-cycle medications will keep the adverse effects relatively "mild" for him.

Joke of the day -- How does a flea get from place to place? By itch-hiking

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, April 20, 2004 9:14 PM CDT

Hi Everybuddy!

Today was almost a normal day, but for diarrhea and it being "Terrible Tuesday." Chris had breakfast again with Mom, who was again doing "Army stuff" today. Chris didn't have much to say about school today, although he thinks that he's going to try to take some accelerated reading (AR) tests soon. He wants to make sure he can attend the end-of-year AR party.

After school, Chris asked for a "dunch." His groupies at McDonalds were a little concerned because they hadn't seen him in a week, but Dad assured them that Chris' scans were looking better. They were genuinely interested and all are still wearing his happy face pins. The guys went right home to finish "dunch" and for Chris to do his homework before going to his religious education class. Chris brought the snacks for today's class. Right after "God school" this afternoon, the guys headed home since Chris still had to finish his homework. Dad made him a quick dinner. They barely had enough time to finish the homework, eat, get Chris into his Cub Scout uniform, walk Genie, and get off to the Cub Scout meeting.

The Scout meeting was fun; the boys were still working toward the athlete pin. Most of today's meeting took place out on the track field. Not surprisingly, Chris is slow compared to his peers. One of the other boys on the backside called him "Grandpa." Chris made light of it by talking about his "old days" when he walked five miles to school in the snow and such (you know -- just like grandparents have done for centuries). He doesn't know it but he's probably just found a nickname -- Grandpa. We'll see. Chris' friend Greg however, is the speedster of the den. Due to all of the field activities, tonight's meeting lasted quite a while.

The guys went right home and Chris had an ice cream bar (well, after a dose of Benedryl). He still had a few stomach cramps at bedtime. Chris asked if he could watch the end of the Disney video, "The Haunted Mansion" instead of storytime. Mom got back home from her Army mission in Orlando just in time to put Chris to bed.

Medically, things are still a bit messed up with stomach cramps and diarrhea. His bruises are continuing to improve, so maybe this means that the bottom didn't fall out from under his platelets?? It's hard to tell because there appear to be a few petechiae scattered here and there.

Joke of the day -- What happened when 500 hares got loose on the main street? The police had to comb the area.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds. Becca, in particular, needs some extra special attention right now.

Love,

Chris, Alison and Pat

Monday, April 19, 2004 9:20 PM CDT

Hi Everybuddy!

Genie got Chris going today with a three pronged effort: first she jumped on the bed and dropped a tennis ball on him (that barely got him moving); then she got off the bed and licked his face while standing on the floor (he rolled over); her last effort was to jump back up onto the bed and to lay across his legs (that did it)! After he got up and moving, Chris had a rare opportunity to have breakfast with Mom (she had the day off from her state job but worked on some Army matters). Chris had a little problem with diarrhea right off the bat, but at least this time there was no nausea. Chris and Dad then went to the Tampa clinic as usual for the Monday morning blood test. His blood test results were: white blood cells rose to 1.9 (normal: 4.0 - 12.0), hemoglobin dropped to 9.0 (normal: 11.5 - 14.5), platelets dropped to 27 (normal: 150 - 450 -- despite Friday's transfusion), while his ANC dropped to 800 (normal: 1400 - 7400). The counts were good enough to keep Chris from having to start the G-CSF leg shots immediately and good enough for him to be able to go to school. While at the clinic, Chris saw his friends Christina and Ashley, but only for a moment. He also did some Earth Day arts and crafts projects while waiting for the various clinic tasks.

Chris had occasional problems throughout the day with diarrhea. Just before leaving the clinic, he had another bout, which earned him a dose of Imodium. Experienced patient that he is, Chris dutifully remembers when he takes his medicines so he can tell the school nurse, if need be. After leaving the clinic, the guys stopped off to get Chris a snack for his school's snack time. He was actually trying to regain his composure since he was feeling a little nauseous at the time. It worked and he felt better by the time he got to school. Timing is everything. The highlight of Chris' school day was taking a survey about how safe the students feel at the school. Chris didn't say much about his survey responses. Mom joined Dad at "pick up" time, which really surprised Chris, who had forgotten that she did not go to work today. Chris's teacher roped Dad into being a chaperone on this week's field trip to "Cracker Country" (an expo on early life in Florida). Mom and Chris waited in the library while Dad spoke with the principal about the pilot test results thus far and as he fixed one of the school's thermal fax machines (Dad is thinking about teaching Chris how to fix it).

We all then headed off for a surprise change in Chris' after-school routine: to watch the new Disney movie, "Home on the Range." Chris thought it was going to be like a "baby movie," while Dad thought that it would be just ok. Actually, it was quite funny and all three of us (who, by the way, had the theater to ourselves) thought that it was a really a pretty good movie. (Supposedly, this film may be Disney's last hand-drawn animated movie.) After wandering around for a bit, we returned home, where Chris gave Genie a new chew toy. That's the last we saw of her tonight (well, we saw her chewing it; it was obviously a hit). Chris also had some homework in which he was to use his vocabulary words in sentences. He hates that type of homework, so Dad advised him to make up a funny story that correctly uses all of the vocabulary words. This, he likes. Tonight's story was about someone buying dust bunnies from an irritable store clerk. We hope the teacher has as much fun with it as we had with the story.

Medically, things were a little bumpy but manageable. Although he is still having problems with nausea, stomach cramps and diarrhea, they seem less severe than they have in other recent cycles. His bruises are healing, but ever so slowly. That's not unexpected, given his low platelet level. Just bumping the corner of his desk can give him a good bruise now.

Joke of the day -- How do you stop a snake from striking? Pay it decent wages.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, April 18, 2004 9:03 PM CDT

Hi Everybuddy!

It was a mom and son kind of day; Dad spent most of his day digging in the mud (ok, actually working on the irrigation system -- once you're muddy, it's best just to stay muddy and get it done). After Dad and Genie got him going this morning, Chris spent most of the day with Mom. At Mass, Chris started off a little bit nauseated, but he thought that it would pass without the aid of medications if he could just sit still for a little while. He was right. By the end of Mass, Chris danced in his pew in a uniquely "Chris way" to an Alleluia hymn with a cross between like the "Chicken Dance" and "The Macarena." Mom had to remind him that he wasn't in a disco. Nonetheless, the choir ladies, who have full view of him from their position, love his joy. As one lady said, she can see him come in looking a little green around the gills, but she loves to see him overcome that with the dancing by the end (her husband is also a cancer patient, sick enough that he is frequently not there, so she tells him about it in order to brighten his day).

As has become a relatively recent after-church trend, Chris got his wish for some Papa John's pizza. That was one of the high points for his day. Chris wanted to be around some kids today, but none were available since they did not have advanced notice. Unfortunately, Greg was unavailable and Brianna was at a Girl Scout event with her Mom today. Chris was stuck with Mom and Genie. After a while, Dad suggested that they go see a movie. They took a look and, based on a television trailer that Chris had seen on a children's network, they decided on the movie, "Johnson Family Vacation." Although PG-13, it was decidedly not a movie for Chris, and the two of them left early, at Chris' request. He made up for it by stopping at the comic book store on the way back home. While there, they spoke with the owner about how to break into kid-level tournaments for some of the cards that Chris collects. His recommendation to Chris was to go and watch one or two tournaments before actually competing. The rules are strictly enforced and may not be the same that the kids use at the clinic. Chris also read some of his new Sherlock Holmes book.

By the time Mom and Chris returned home (it took a little extra time since they had to make a couple of bathroom stops on the 15 minute drive from the theater to our home), Dad had finished his messy work and was cleaning himself up. Because a fluorescent light located in a critical place was dimming as it approached its "burn out" point, we had to go out for a replacement. Later, after dinner, Chris came up with his own weird lyrics for a song about Steve Irwin (the Crocodile Hunter). You never know what he's going to think about next.

Chris spoke for quite a while with Uncle Alex, and among many thing, they talked about "bugs." Chris also was involved in an "instant message" with his former child life therapist (she used to work at our clinic but is now living and working in Germany). She enjoys living there again (she used to be a school teacher at an American military compound) and is happy that the weather is warming up. It was good to hear from her. Of course Chris had to tell her about his "blinking teeth" prank.

Medically, things took a step backwards in the sense that Chris had several bouts of stomach cramping and diarrhea. He's back on Benedryl and Imodium AD when required. His bruises are beginning to clear up but it will be a while, especially since his blood counts are probably descending. We still have to wonder how he got them, but who can tell when he's so sensitive that a simple pinch can cause a purple bruise.

Joke of the day -- (the Steve Irwin song, sung to the tune of "BINGO") - There was a dog who bit Steve Irwin, and Dingo was his name-o. D- I- N- G- O, D- I- N- G- O, D- I- N- G- O, and Dingo was his name-o.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, April 17, 2004 9:48 PM CDT

Hi Everybuddy!

Since Mom had to go to Army Reserve drill today, the guys were home alone. Chris opted to sleep in this morning but awoke before Genie and Dad could get to him. Not wanting to disappoint Genie, he went back to "sleep." That was good enough for her as she did her wakeup job as usual. She had spent all night in his room last night.

Chris called to see if Greg was back from his Little League game but only got his answering machine. Chris then began working his way through his video game. He is doing quite well and the imagery is phenomenal. Greg called and the two made plans for Greg to visit here in the early afternoon. Dad took a break from the school project on which he had been working and the two played a rigorous game of keep-a-way with Genie. She was playing really close to Chris and made some amazing steals. She also learned his trick about Chris bouncing a ball off the wall to get it by her to Dad. She learned quickly to go to where the ball would be instead of chasing it dead on. Both the guys were very impressed. They eventually wore her out though.

Chris also got a call from Grandma and Grandpa about the "tooth lights." Chris thinks that Grandma might want one to wear when she goes to church (it could happen). He also told her about some toys that the Wild Planet people had sent him to test. One is a dunking machine except you don't get dunked. Instead, there are a set of sprinklers that get placed in front of an inflatable stool (or it could be a lawn chair). If you hit the target, it opens a switch that turns on the sprinkler. Chris said that he was saving it to use (on Grandma of course) whenever she next comes to visit. As Grandma would say, "Why not?" We have a hair dryer somewhere around here. Well, we'll just have to wait and see about that one.

When Greg got here, the boys played a video game for a while. Then they rode bikes, and then they wanted to go out and get wet. They actually tested the "dunking" machine (Grandma beware: it works quite well). They're planning on setting it up for the Webelos event that we're hosting in June. They also got Genie once, who pretty much stayed away from them for the rest of the afternoon. Chris also thought of a neat variation to the game: instead of throwing the ball at the target, he got out his T-ball batting stand out and the boys had to bat a ball at the target. They did quite well. Dad cleaned the pool and everyone donned wetsuits (Greg wore Mom's and looked pretty much like a penguin), then the two went swimming. They also had a diving competition (of sorts). Neither are Olympic hopefuls but still managed to have some gold medal fun.

Not too long after they got cleaned up from the pool, Greg had to leave. Just after he left, Mom arrived home. We enjoyed dinner out and went book shopping (ok, at least Chris did). After an interesting meal of miniature corndogs, he ended up by a book of Sherlock Holmes stories. He wondered why Arthur Conan Doyle was "Sir" Arthur Conan Doyle, so we told him about modern British knighthood. As we had given Genie a good workout earlier and it being late, Chris went right into the "nighttime stuff."

Medically, things went quite well for Chris and he didn't report one problem. We're really thinking that the Vantin was a good call by the doctor now. However, he is full of nasty looking bruises all over legs and arms for some reason, most of which can't be explained (except for the small purple one by his belly button, where he pinched himself yesterday as he button his pants). Most of those bruises were there yesterday, but for some reason they looked worse today despite yesterday's platelet transfusion.

Joke of the day -- What does a dentist call his x-rays? Tooth-Pics.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, April 16, 2004 9:14 PM CDT

Hi Everybuddy!

Chris had a repeat of a morning a few days ago. He took some Benedryl, ate a couple of bites of his breakfast, took his morning pills, and then made a dash for the bathroom, where he vomited what little was in his stomach, including of course obviously visible medicines. Within a couple of minutes of the bathroom run, Chris felt fine. He ate about 6 saltine crackers and the re-dosed prescription stuff. Chris didn't have a lick of trouble with his chemo infusion this morning, nor afterwards, so we are adding Benedryl into his pre-chemo medications lineup for the next cycle.

The blood test results showed that all of his counts had dropped: white blood cells dropped to 1.7 (normal: 4.0 - 12.0), hemoglobin dropped to 9.5 (normal: 11.5 - 14.5), platelets dropped to 22 (normal: 150 - 450), while his ANC dropped to 1000 (normal: 1400 - 7400). Chris was permitted to go to school, but we thinking he'll probably start the
G-CSF shots on Monday. Because his platelet level was so low (and ought to be going down in light of the chemo) as Chris heads into the weekend, the doctor ordered a transfusion of platelets for immediately after school. The guys ended up at the clinic twice today. The oncologist didn't get to sit down yet with the radiologist who read Chris' MIBG scan results so Dad doesn't know if his "debris theory" for Chris' liver results holds water.

Chris kept people entertained with a new prank. He got people to look at his missing tooth. When they did, he lit up his new LED (blinking lights) mouth appliance. Many of the parents asked Dad where to get some for their boys. It looks especially cool in the dark. (Even Mom thought it was an unusually cool gadget, when she saw it later this evening.)

He felt very good after the first clinic visit so the guys headed right to school, where Chris did not have any problems. When Dad returned to pick him up after school, Chris was again dancing around in his classroom. It's becoming a running joke between Dad and Chris' teacher about whether Chris is really getting chemo. (How we wish it weren't so!) Chris had to wait just a few minutes while Dad finished collecting some data from some of the fifth grade classes participating in the student volunteer program test.

The guys went right to the clinic so that Chris could get his platelet transfusion. There was a little boy there (probably about seven years old) who had some game cards that Chris also has. The nurses got the two together so they could have a card game during their infusions (the other boy was getting a red blood transfusion). Chris ended up doing most of the math for the game, but both kids did a good job playing and learning. They also traded some cards. Chris' infusion went like clockwork.

Before coming home, the guys stopped at a store where Chris opted to spend some Grandparent and Tooth Fairy money on outdoor adventure gear (an explorer's watch and trek belt). Then they waited for Mom's return before dragging her off to the drug store for some medical supplies. We then opted to go to a nearby restaurant, where to our surprise, we ran into Greg and his family, who kindly asked us to join them. The two boys had a great time together; Greg loved his mouthpiece/LED lights. Since Dad probably isn't up to going walking tomorrow (as previously planned), the guys might go watch Greg play in his Little League baseball game. Chris also saw one of his classmates at the restaurant (a girl), so he went over to say "Hi." Big mistake! Now Greg and his parents have her labeled as "Chris' girlfriend" (which really isn't the case). It was fun as they kidded him about her for a bit.

Medically, things went well for Chris, but for again losing his breakfast. He was full of energy after school all the way to bedtime, when his stomach started getting tied up in knots and the diarrhea started. All-in-all though, it doesn't get much better than this, although we know that Chris wants to leave the diarrhea and vomiting period behind. We think that the Vantin is helping during the chemo cycle and we'll see whether the pre-breakfast Benedryl helps during the next cycle, too.

Joke of the day -- Camp Counselor: How did you get that horrible swelling on your nose? Camper: I bent over to smell a brose. Camp Counselor: There's no b in rose! Camper: There was in this one!

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, April 15, 2004 9:18 PM CDT

Hi Everybuddy!

Chris was only able to eat a couple of bites at breakfast this morning, due to the usual nausea. Interestingly though, in spite of the upset tummy, he wanted sausage, so the couple of bites were sausage bites. Nothing bland for this kid when his stomach has the heebie-jeebies . . . Although he had to put his head down several times this morning as he waited for the Benedryl to kick in, he was able to hold it together and did not vomit. Once he got over the hump, he did fine.

In fact Chris did fine at the clinic (where he sang Happy Birthday to a brand new 5 year old) and at school. By the time Mom came home from work, Chris was still in very good spirits and be-bopping around. He was in much better shape than Dad, who is down with some sort of a bug.

After dinner, Mom, Chris and Genie played a spirited game of tennis ball keep-away, but they tried to be somewhat quiet so as to not disturb Dad, who was resting. That didn't last too long though because at some point during the ball game, Genie (there is no genteel way of putting it) loudly let some gas pass. In keeping with the time-honored code of 10 year old boys, laughed so loud and rolled over on the floor.

Dad did get up at one point just before Chris headed off for bed. He found a package at the front door. It was from Chris' "employer;" Wild Planet Toys. Chris is a member of its toy testing team, aka "Kids Invention Team" (KIT). Each package seems to get bigger and bigger. This time he received an umbrella with the company logo, a newly designed (and in Chris' opinion, better designed) WaterBlaster (a large squirt gun that shoots water balls, not the traditional streams of water), an Extreme Canteen, and a Dunk Seat (like those carnival games where you throw bean bags at a target, and if you hit, the person in the dunking booth falls in the tank, except that this is designed to have a garden hose squirt water at the person). As cool as that stuff is, Chris was also captivated by the promotional material that gave him visual previews of what is to come in the near future.

Medically, things went pretty well for Chris, once he got up and going. The loose tooth, by the way, is no longer loose. First it got a little bloody this afternoon, but then Dad helped make sure that it properly left the mouth, and Chris was a very happy camper about that. He told Mom that he has an interesting idea for the two gaps left by his recently lost teeth; she just can't wait to see what it could be.

Joke of the day -- Doctor, Doctor, I snore so loud that I keep myself awake. What can I do? Sleep in another room.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, April 14, 2004 9:35 PM CDT

Hi Everybuddy!

Chris had a relatively good day, at least after it got started. He didn't eat more than a couple of bites of his breakfast apple, but he was able to take his morning pills. Not long thereafter, he made a dash for the bathroom, where he vomited what little was in his stomach; the medicines were clearly visible. We re-dosed the prescriptions stuff and gave him a Benedryl to help with nausea. Possibly because of the Benedryl, Chris didn't have a lick of trouble with his chemo infusion this morning, nor afterwards. Who knows, but we're going to try it again tomorrow. Chris' blood test results showed that most of his counts had risen (yup, even in the middle of a cycle of chemo): white blood cells rose to 2.1 (normal: 4.0 - 12.0), hemoglobin climbed to 10.2 (normal: 11.5 - 14.5), platelets dropped to 29 (normal: 150 - 450), while his ANC rose to 1200 (normal: 1400 - 7400). Chris was permitted to go to school and didn't need to start G-CSF.

Dad obtained a copy of Chris' bone marrow test results: no evidence of disease there (yeah!). In fact, the doctor is somewhat surprised at how healthy his marrow is, under the circumstances. His marrow test not only checks to see whether there is any signs of neuroblastoma in the sample drawn, but it also measures whether the actual bone marrow cells are of the normal number, their health and whether the various marrow cells (just like blood, there is more than one type of marrow cells) are in the right percentages relative to each other. Most of the time, Chris' marrow has generally been in the correct proportion relative to each other, but typically there are fewer such cells than one might expect to find in a "healthy" person (the medical term is "hypocellular"). That makes sense since his body has been through quite a bit of chemotherapy over the years, which of course lowers the blood counts as well as the marrow, where blood cells are made. This time, for what we believe is the first time, Chris' bone marrow samples appear to be mildly "hypercellular," which means that there are actually a few more marrow cells in there than are typically in a "healthy" person. So, the oncologist that the results were better than expected. (Chris has never been a "textbook" patient, but this sounds like he's done it again but in a good way.)

Dad doesn't claim to be a medical expert, but he proposed an alternative theory as to why Chris' tumors are decreasing in the right lobe of Chris' liver while at the same time there was is "persistent increased uptake" in the left lobe of the liver but without there being any tumors. Dad asked the doctor whether this effect could be "debris" (perhaps the remains of tumor cells being destroyed by the chemotherapy). Although the term, "persistent increased uptake" has been used before to mean "diffuse disease," we have some unanswered questions. First, does "increased" mean increased since the last scan, or increased relative to that specific scan's background imagery? Depending upon the answer to that question, is it possible that there is more uptake in the left lobe because there was significant decrease in the right lobe tumors? Dad's questions was whether some "live" cancer cells could get discharged with some of the "dead" cancer cells as they are processing normally through the liver on their way out of the body as waste. The oncologist thought that the theory was more intriguing than absurd; it could explain the left side activity although the liver doesn't quite function as was suggested. Nonetheless, she intends to discuss it with the radiologist and some of her colleagues to see whether it makes sense. If the theory seems to hold water, the next thing would be to see if there is some medicine that can be given to Chris after the chemo cycles to help his liver purge itself of this "debris." The effectiveness of this, and possibly the theory itself, could be evaluated during the next scanning period. We have been giving Chris milk thistle every day except for when he is actually receiving the chemotherapy; it purportedly helps improve liver functioning, including clearing waste from the liver according to several German studies.

Chris felt good today, and was actually dancing around after his chemo infusion. The guys decided that it was probably too late for him to make it to lunch at school, so he got something at the drive thru at McDonalds. Surprisingly, there was a little glitch at lunch, so Chris made it to school lunch after all, where he ate more chicken there (that's fine since he's at that point where he usually loses weight). Happily, Chris did not have any problems at school. When Dad returned to pick him up after school, he was dancing around in his classroom. Dad bets the teacher is probably wondering what they put in that chemo anyway (if only that were the "side effect").

The guys went right home after a short stop at the school's library. Chris walked Genie and then the guys played keep-a-way for a while. Chris then crawled into his game world and started on his quest. Dad checked on him from time-to-time to make sure that he was drinking and hadn't been eaten by a mystical monster. Genie stayed by him and snoozed. When Mom got home, we enjoyed dinner at home, then played a new game of keep-a-way. This time we used three tennis balls. Genie tried to keep up for a while but soon retired to her secret hide-out (under an antique loveseat). We finally lured her back out for a spirited conclusion by rolling one ball slowly across the floor. It was just too much for her to ignore.

Medically, things went well for Chris, but for losing his breakfast. His other loose tooth is really getting loose. The nurses were hoping that it would hang in there until he gets platelets, probably on Friday. Dad thinks that might be a bit optimistic (on the other hand, his last tooth really had some staying power). We'll just see when Mother Nature wants that tooth out.

Joke of the day -- Those who jump off a Paris bridge are in Seine.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, April 13, 2004 9:35 PM CDT

Hi Everybuddy!

It was a very quiet morning at the clinic; Chris had the place almost to himself for the three hours it took for his chemo infusion this morning. There were the nurses and the doctor of course. The IV Zofran isn't doing all that it's supposed to for him, so Chris felt nauseous about two-thirds of the way through the infusion. He watched "Spy Kids 2." All-in-all, it went well though. Chris said that he didn't feel up for school but Dad told him that we'd make that decision once we got to the school's parking lot. Sure enough, once he was there, Chris felt good enough to spend the rest of his day at school. He didn't even require any additional medications.

Chris didn't have any problems at school, but when Dad picked him up in the afternoon, he reminded Chris' teacher that this week was a "bad chemo" week. She gave Chris instructions that would allow him go to the restroom or do anything else he might need to do, in case of vomiting or other adverse effect. Chris has been lucky with understanding
teachers. Chris then headed over to the library since Dad had to go around and update all of the volunteer books with a new task the kids can volunteer to do. So far, the teachers report that the kids are very enthusiastic about the program.

The guys had to stop at a store for some shopping. While there, they got Genie some new tennis balls to see if it might renew her interest in playing keep-a-way. The guys then headed home, where Chris played video games, did his homework, and goofed off with Genie. He told Dad that he wished that there were more kids in the neighborhood (so do we). When Mom got home, she took us over to pick up the station wagon, now that the service has been performed, and then on to dinner. At the new restaurant, a server walked up and started talking with Chris. As it turned out, she used to work at our local Pizza Hut. She was very nice and Chris gave her a happy face pin that she really liked (she told Chris that she too has a pin collection).

Medically, things went reasonably well for Chris, although the nausea and diarrhea have started. He needed some Benedryl towards the end of the infusion to stave off the nausea. His tooth (the opposite of the one that came out last week) is getting very loose, but not loose enough that Dad could extract it. Surprisingly, the only thing that can get Chris' head nurse to swoon is a loose tooth. She can handle compound/complex fractures but not loose teeth. Chris thinks that it's sort of funny. She then told Chris how her dog once got a hold of a pair of dentures. After chewing on it for a bit, the dog came back into the house as if he was wearing the dentures. It was too funny to get upset with the dog.

Joke of the day -- What is the first thing a king or queen does when they come to the throne? They sit down.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, April 12, 2004 8:48 PM CDT

Hi Everybuddy!

Chris got a cool wake up today from Genie: she licked just as he was yawning, blah! Chris and Dad spent quite some time in the clinic since today was the start of yet another cycle of the chemo drug, Irinotecan. This required Chris to get his mediport accessed, a blood sample drawn, and a doctor's exam. Chris' blood counts had dropped. His blood test results were: white blood cells dropped to 1.9 (normal: 4.0 - 12.0), hemoglobin remained at 9.9 (normal: 11.5 - 14.5), platelets were 40 (normal: 150 - 450 -- despite Wednesday's transfusion), while his ANC dropped to 700 (normal: 1400 - 7400). The counts were good enough to keep Chris from having to start the G-CSF shots, but poor enough to warrant having the doctor make the call. Her decision: go for another cycle. She also said that the G-CSF shots should begin again if the ANC drops to or below 500, even if he was in midst of a cycle of chemo.

The oncologist was quite pleased with Chris' most recent scan results, but is going to have a "sit down" with the radiologist to try and identify what is going on in the left lobe of his liver. Although the known tumors (lesions) have diminished, the left side showed more uptake, albeit nonspecific. If they cannot deduce what is going on there, the oncologist is considering having Chris scanned with another type of scanner. The activity in the left lobe of the liver doesn't show up on the CT scans. She also told Chris that it looks like she will likely be the camp physician when he goes to Boggy Creek Camp this summer. She will be able to bring her daughter (who is about Chris' age). Chris is hoping that maybe her daughter would make a good coconspirator with him regarding whatever camp pranks get pulled this year. The doctor's attitude is basically, "yeah, bring it on!"

Chris was able to goof off a bit at the clinic. He got his picture taken with the "Easter Bunny," mainly to appease the person responsible for bringing the bunny there -- and to show one little girl that there was nothing to be afraid of when dealing with the big bunny (she later got her courage up and had her picture taken, too). Chris also watched the movie, "Jimmy Neutron" and joked with the nurses. One of the clinic's televisions makes a disgusting noise when it is moved, so when the film was over, he and Dad moved it back and forth for a while, for the benefit of one of the nurses with whom Chris kids around. After about a minute (whew!), she turned around to see who was making the disgusting noise, she realized that she had been had, after all the patients started laughing (they amazingly maintained control while all of this was going on).

After leaving the clinic, the guys headed over to Chris' school (not by his choice since it's a day off) since Dad was hoping to pick up the correct rosters of students involved in the volunteer program test. Since it was supposed to be a no teacher day, the guys had to knock on the door of the office area. Dad tried but had no luck. Our black belt tried it, and none other than the principal herself came to answer the door. She got Dad squared away and Chris volunteered to be the doorman.

Chris didn't want any lunch; he only wanted to call Greg (who did have to go to school today) and play video games. They later tried to play with Genie, but she seems to be losing interest in the keep-away game (we'll have to jazz it up for her). Chris eventually ate a grilled cheese sandwich. When Mom called, we met her at the auto repair place (for the station wagon's servicing) and then went on to dinner. Chris ate well at dinner thankfully.

Medically, things went reasonably well for Chris, although the nausea has already started. He needed two additional doses of Zofran today. He has also fallen off a bit on eating and drinking, and has already lost one half of a kilogram.

Joke of the day -- What did the pig say when he was sick? "Call the Hambulance!"

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, April 11, 2004 9:15 PM CDT

Hi Everybunny!

Happy Easter! Chris had a great day today. When Dad got up to walk Genie this morning, he found Chris admiring the Easter basket that the "Easter Bunny" left for him. Chris really doesn't believe in the Easter Bunny, but still "attributes" things to him. This morning he was surprised to find that the Easter Bunny knew that he liked a certain type of playing cards and had in fact left him some in his basket (Chris isn't all that much into candy, although he does eat a little from time to time). Chris was eager to get going this morning. He had breakfast, swallowed his medicine, and got cleaned up and dressed before Mom began to stir. She was surprised to see him ready to go when she went to see about getting him ready for church. Chris considered today to be a very big day, not only because it was Easter, but also because it was the end of his self-denial of several of his video games during Lent. Chris had really done a good job of leaving those video games alone, and now he finally got to play them again.

Not unexpectedly, the church was very crowded today. In fact, there were a total of 12 jam-packed Masses going on throughout the morning and afternoon, both in the church itself (which holds about 2000 people) and its "family center" (which can hold another 1000 people when the partitions are removed so that it is all one large hall). Even though Chris and Mom left earlier than usual for their regular Mass, the church was already packed with people and they just barely were able to secure seats. In spite of the crowds, Chris still saw one of the members of the choir who has taken a special liking to him. She presented him with an Easter gift and a big hug. She is the grandmother of 16, but still gets a big kick out of Chris' smile. From her position in the choir, over the weeks, months and years, she has been able to see him bend over from stomach cramps, dance in the pew to the music, and watch his hair come and go.

Later in the afternoon, we visited with our friends, Les and Ingrid. Les had previously told Chris to bring plenty of tissues since they were going to have a chess competition today and he just knew that Chris would "need" them. As it turned out, Chris won one match but Les won two. Les is a good coach, and not too easy on Chris. Before the chess games though, the guys went swimming in their complex's heated pool. Chris loved it getting in there, but was reluctant to really "swim." Les got him going by calling for a swimming competition. It was amusing since both took liberal opportunities to cheat. Les got him swimming quite a bit. The events involved a traditional Compton, arms only strokes, one arm swimming, and several permutations of the theme. Chris had a blast! We enjoyed a wonderful Easter dinner there too; Chris proclaimed the ham better than the "Chinese ham" he has in New York (one of his favorite meals). Ingrid took that as the complement, as it was meant to be (albeit a weird one -- Chris can sometimes have quite a way with words). Chris also played Easter Sleuth and helped Les find some missing Easter eggs. Chris found all eight of them. Les turned it into a hasty competition and "found" a bag of twenty eggs that had suddenly "gone missing" (in the refrigerator), thus beatings Chris' record of eight. The two had a good laugh about it, and Chris somehow managed to keep all of the eggs as a finder's fee.

Chris is due to begin another cycle of in-clinic chemo tomorrow, we are keeping him on the "school schedule" so we left earlier than he would have liked. However, he fell asleep in the car on the way home. Once there though, he woke up enough to give Genie top priority for playtime. Mom and Chris had her running like a rabbit and gave her a dog pile. She got the good runabout that she needed.

At various times throughout the day, we spoke with Grandma and Grandpa (there were the usual frivolities before we noticed that Chris had slipped away from the phone, presumably to play his game), and Grannylin and Granddad, too.

Medically, things went well for Chris although he got nauseous on the way to Les' home. He felt a little bit of stomach cramps in church this morning, but was able to deal with it without medication.

Joke of the day -- (a Chris joke if we've ever seen one) -- Teacher: You missed school yesterday, didn't you? Pupil: Not a bit!

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, April 10, 2004 9:24 PM CDT

Hi Everybuddy!

Chris enjoyed a quiet day at home. He awoke on his own, then snuck into the master bedroom and up to Dad, who was working on the computer. The amazing thing about it all was that Genie was by his side. She normally rattles as she walks because of all her tags. Dad is not sure how Chris pulled it off.

Chris spent a lot of his day playing with Genie and reading. He also tried to get in touch with one of his friends from school to see if she wanted to go with us to the movies, but that did not work out. We also tried to link up with another friend, but with no success. That didn't stop us from seeing the new movie, "Elle Enchanted." It got three thumbs up from us, and a lot of applause from other viewers after the show. Chris has already noted that the film is different from the first three chapters of the book "Elle Enchanted," which he just started reading last night. The movie is entertaining and light-hearted.

After the movie, Dad came up with reasons to walk all the way down to the end of the mall (we all needed the exercise). Of course, at that end, he came up with a good reason to walk to the other end of the mall, so we did that, too (there really was a reason that time). Chris didn't do his usual skipping routine, but he did get a little workout. He has complained of a little pain in his upper thighs since playing hackey-sack ball two days ago, so Dad wanted to give them a modicum of exercise at least.

The next stop was to a nearby Italian restaurant, where Mom tried to get Chris to eat anything but pizza. As she'd suggest shrimp, some sort of pasta, etc., Chris always politely responded, "You mean cheese pizza?" It was sort of funny. Yes, he wound up with pizza, but the sauce had chunks of stewed tomatoes, so he struggled through dinner.

Once home, Genie was top priority for playtime. Mom and Chris, and eventually Dad (who had been outside working on a project), gave her such a keep-a-way workout that she ended up laying down under a table while Chris, Mom, and Dad tried to lure her out by passing the ball back and forth slowly. She was finished for the evening and never did come back out to play.

Medically, things went reasonably well for Chris. From time to time, he has complained about a bit of soreness in his upper thighs, the first time was during a hackey-sack ball game a day or two ago. We don't think it's due to the usual kind of muscle fatigue, although it could be a result of the G-CSF shots. That, however, has not been a problem for Chris in the past. If he mentions it again tomorrow, we'll mention it to the doctor on Monday. Around midmorning, Chris also asked for Benedryl to help him contend with the "itchy hands" sensation. One dose was enough to take care of it today.

Joke of the day -- Why does Peter Cottontail hop down the bunny trail? Because his parents wouldn't let him borrow the car.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, April 9, 2004 9:49 PM CDT

Hi Everybuddy!

Chris and Dad experienced one of those clinic days that both would just as soon forget. Dad let Chris sleep until the last minute since all Chris could do in this morning was brush his teeth and get dressed. He could not eat because of the upcoming surgical procedure (bone marrow aspirate). The guys arrived at the clinic on time and things got off to a good start. As it turned out though, Chris' blood counts had dropped. His blood test results were: white blood cells dropped to 4.1 (normal: 4.0 - 12.0), hemoglobin rose to 9.9 (normal: 11.5 - 14.5), platelets dropped to 27 (normal: 150 - 450 -- despite Wednesday's transfusion), while his ANC dropped to 2000 (normal: 1400 - 7400). They were good enough to stop giving Chris the G-CSF shots, but poor enough to warrant another platelet transfusion (the bone marrow aspirate procedure involves drilling into Chris' hip bones in order to get bone marrow samples for testing; it's important to know that he has enough platelets in his body to stop the bleeding after the procedure). These blood test results were a bit confusing considering that Chris had had a G-CSF this morning, yet both his WBC and ANC dropped. The guys were told to come back at 11:30 a.m.

The guys then headed over to the surgical suite in order to check in early and to see if Chris could take his morning medicines and those needed for premedication before the needed platelet transfusion. (He was granted permission to do both.) Chris and Dad decided to kill an hour and a half by "window shopping" at Toys R Us. Chris really didn't want anything, but with time on their hands, they checked the place out quite thoroughly. On the way back to the clinic, Chris got a cold bottle of water. He couldn't drink much (because of the bone marrow aspirate procedure), but he needed some in order to swallow his medicines. Chris enjoyed the little bit that he had nonetheless.

For some reason, when they returned to the clinic, they seemed to have been ignored. Finally Dad tracked down the head nurse to ask what was going on because they were running out of time to do the transfusion in advance of the surgical appointment. It was then that they learned that Chris had been "bumped" to a later appointment in the afternoon. Eventually, Chris was hooked up for his transfusion, and he watched the movie "Spiderman," followed by "The Wild Thornberry Movie," so things weren't all bad. Chris kept some of the nurses, and a teenage patient, occupied by asking them questions from his 4th grade Brain Quest card game. They overheard that Chris had been slipped back on the surgical schedule a few more times. Finally, Chris got into the surgical suite two and a half hours late. It was a bit irritating to learn that some kids had been moved forward in the schedule ahead of Chris with no explanation nor apology. The procedure went well, but Chris woke up disappointed (he didn't see any "butterflies" like he usually does) and he was grumpy (which is rare for him after a procedure).

Chris' mediport was de-accessed with no problems (although Chris just wasn't Chris). He was disappointed to learn that they'd have to hang around as Dad learned that the scan results were finally in but the doctor had to review them before they could be released to Dad. She was in the middle of taking reports from several locations. We finally got word that she'd release them to Dad, especially since she thought that they contained good news. We'll talk to her in detail on Monday.

The MIBG scans show "marked improvement in the right liver lobe" as compared with the December 2003 scans. The two lesions (tumors) that showed up brightly on the December scans have decreased in size, but the intensity has "only slightly decreased." Interestingly, one of the lesions within the right lobe is "at the level of the right adrenal gland." In 1999, Chris lost his left adrenal gland (these glands, by the way, actually sit on top of the kidneys, not the liver), along with his left kidney because of the left adrenal gland was suspected to be his primary tumor. The MIBG scan also shows "some persistent increased uptake within the left liver lobe." In the past, that "persistent increased uptake" has been described as "diffuse disease," which we understood to mean that it was probably neuroblastoma that had not coalesced into a solid tumor. That has been a treatment problem because there really is no other good way but for chemotherapy to treat it (i.e., it cannot be surgically removed because it's scattered). Only one of the liver lesions is visible on the CT scan; the second one is no longer visible. There really is no other significant information on the CT scan, not even tumor sizes. Since the day of diagnosis, there has been a constant lesion that has appeared on Chris' right kidney. It's still there. (Because it has never changed in size, the doctors have assumed in the past that it is probably a cyst.) We'll have to wait for the oncologist's full interpretation of these results. Right now, it appears that there has been some improvement, but we're not sure of what it means in terms of Chris' treatment options. We are grateful that there are no signs of the disease appearing elsewhere within the scans' area of focus.

Amazingly, "Mr. Grumpy" (Chris) didn't want anything to eat or drink, but he did want to go right home. Once home, he walked Genie before heading off to his room, where in his grumpy state, he yelled at the neighbor's barking dog. That dog has never bothered him in the over five years we've lived here, so that was new. He eventually gave up pouting and ate a "Brown Cow" ice cream bar that Dad had offered him earlier, some cheese crackers and drank a soft drink. Not surprisingly, after about ten minutes, Chris was back to being a goofy boy again. He said he learned something new today about not eating and drinking. The guys then waited for Mom to return. When she arrived, we went to dinner and a bookstore, where Chris picked up two new books. One book, "Elle Enchanted," is also a movie that is playing now that he wants to go see.

Medically, things went reasonably well for Chris. He learned that not eating or drinking something after having done without for nearly twenty hours isn't a good idea.

Joke of the day -- Why is a dog with a lame leg like adding 6 and 7s? He puts down the three and carries the one.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, April 8, 2004 9:22 PM CDT

Hi Everybuddy!

Today was a bit different. Chris had to go back to the clinic this morning even though he wasn't scheduled to be there so that his mediport dressing could be inspected. As it turned out, Dad's repair job was good enough. However, the nurse had to undress the area to verify that it was copasetic. Chris was also a little confused since he was originally supposed to go to the clinic with Mom this morning because Dad had some tasks to do for the startup of the pilot test for the student volunteer program. Mom woke up with a terrible headache and Dad got things finished quickly thanks to the cooperation of the fifth grade teachers, so he got back home just in time to take Chris to the clinic. That gave Mom a chance to try to recover from the headache.

Thursday is not usually a busy day at the oncology clinic. Dad blundered into a nurse who asked why they were there today. Dad let her know, and she inspected the dressing. Unfortunately, that entailed dismantling Dad's repair job, so Chris got a new dressing anyway. The guys also stopped by the audiology clinic (in the same building) to pick up copies of Chris' most recent hearing test results, which somehow never made it to the school.

Their next stop was at school, where Chris met up with his class. He made up the morning class that he had missed and continued on. At some point during the morning, Chris developed "itchy hands," which is probably a nerve reaction to his chemotherapy. Both Chris and the school nurse know that Benedryl often helps to deaden those sensations. The school nurse gave him a dose, which helped but also made Chris so drowsy that he slept through his class' "mini-party." His teacher and classmates are very understanding about Chris, who actually napped in class. When Dad picked Chris up this afternoon, the two went around to all the fifth grade classes. So far the word back from the teachers is that things are going well and the kids love the volunteer program. Chris said that he wanted to be part of the test, but that's not possible (it's for fifth graders only).

The guys then went shopping for a toy that Chris wanted to buy with his allowance. While they were out, they saw the fourth grade version of "Brain Quest," so they got it to play while waiting, whether at restaurants or waiting rooms. We played it tonight, and Chris did quite well. Since he won't be able to eat anything again until about 2:30 PM tomorrow due to tomorrow's bone marrow aspirate procedure, we let Chris decide what to do about dinner. Not unexpectedly, he decided on pizza, so we went to our nearby Pizza Hut restaurant. We were fortunate enough to be waited on by Chris' favorite server, who is a cancer survivor herself. She really spoils him too, but the two are really funny together.

Once home, Chris took his medicine and then the guys sat down to play keep-a-way with Genie. Tonight's game had two tennis balls. That was a bit too much for Genie and she made some clumsy moves. Eventually, she just laid down under Mom's chair and watched. Occasionally the guys lured her out by rolling a ball near her.

Medically, things went well today up until Chris developed itchy hands. He was a little grumpy when Dad picked him up from school, but they figured that it was because he had fallen asleep during the class party.

Joke of the day -- (Chris' comment during keep-a-way tonight -- Genie made a spastic attempt to get a ball and clumsily bumped into a wall). "Genie, you're a K7, which is sort of insulting. You're not playing well enough to be called a K9."

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, April 7, 2004 9:46 PM CDT

Hi Everybuddy!

It was another big clinic day for Chris. For some reason, there were little things that just kept going wrong although not seriously -- just enough to slow things down. We heard from the New York doctors, and among other things, learned that Chris doesn't really have a lot of medical treatment options. They will wait until one of Florida doctor calls them after all of the most recent test results are complete. (As of yet, the scan reports still haven't been completed. This is very disappointing.)

The day started with Chris and Dad heading to the Tampa Clinic already aware that Chris was likely going to receive a platelet transfusion; it turned out that he really needed it. There were "speed bumps" scattered along the guys' path this morning; nothing went according to plan. Because of the delay, Mom ended up having to relieve Dad at the clinic since Dad still had several more presentations to make to the fifth grade classes. Chris' mediport was accessed, then blood was drawn for the routine blood test. His blood test results were: white blood cells rose to 5.0 (normal: 4.0 - 12.0), hemoglobin dropped to 9.7 (normal: 11.5 - 14.5), platelets dropped to 14 (normal: 150 - 450), while his ANC rose to 3400 (normal: 1400 - 7400 -- the increase in this and WBC was due to the daily G-CSF shots). The doctor cleared him to attend school. The platelet transfusion was delayed by clinic staff and by the fact that both Dad and Chris forgot to do the transfusion pre-medications (Benedryl and Tylenol), which caused a half hour delay. Once it got started, the transfusion went without incident. Chris was pretty drowsy at the end of it, but managed to shake it off by the time he walked into his classroom.

Mom dropped Chris off at school after the clinic visit. Dad kept bumping into some of Chris' classmates, who it seemed to Dad were everywhere he went today. They kept telling him that he had just missed Chris. Ha! Dad was at school all day, either making presentations or trying to fix some office equipment, so there was plenty of chances for the two to bump into each other. It just didn't happen, although Chris said that he was looking, They linked up after school though and went over to the media center where Dad had a meeting of the School Advisory Council. Chris (ok -- and Dad) were happy to learn that it was the last SAC meeting for this school year. Chris did his homework there and helped a friend who was having trouble with math (her mother is also on the SAC). The two kids then spent most of the remainder of their time playing on the library's computers or playing checkers.

The guys stopped by McDonalds for "dunch" as Chris was hungry and Dad hadn't eaten all day. The crew there all asked about Chris and joked around with him, Once home, Chris was on his own since Dad was making some changes to the program that had been recommended by the kids (they're a good bunch). Chris played with Genie and spent a lot of time goofing off.

It turned out that Chris had too much of a good time. Despite Dad's cautions, the mediport dressing was peeled back a great deal -- almost to the point of coming half-way off (which is an infection risk). Chris told Mom as soon as he realized it, and we realized that he needed some supplemental taping. Dad was very disappointed. Chris will have to go into the clinic for an unscheduled visit tomorrow so that a nurse can inspect the dressing and either redress it or de-access the mediport. He doesn't need any infections.

Chris spoke with Grandma and Grandpa today. He has a neat tactic that they are on to. When he has talked about as much as he wants to talk, he always asks if they'd like to speak with his Dad (or Mom, depending upon who is home). It works, but the grandparents think it's funny. Chris also received a cool card from a friend from Connecticut. He is always happily surprised by the things people send or write to him. He thinks that he's pretty lucky (and he is).

Chris let Mom in on some exciting news: the principal let everyone know that the students are no longer restricted to just reading AR books to qualify for their AR objectives. Chris doesn't usually care for the AR books because he reads on a higher level than is "authorized" for 4th graders, but he's always reading something. Chris was very happy about this news. The purpose of the program is to encourage kids to read. He already has several books in mind, now that the restrictions have been lifted.

Medically, things went reasonably well for Chris. His latest loose tooth is just in its early stage of loosening.

Joke of the day -- Teacher: Now class, whatever I ask, I want you to all answer at once. How much is six plus 4? Class: At once!

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, April 6, 2004 9:54 PM CDT

Hi Everybuddy!

Today was a kind of weird day. Chris knew that Dad was at school all day (making his kickoff presentation to all of the fifth grade classes), but the two didn't manage to bump in to one another (although Dad bumped into almost everyone from his class). Ha! Chris had a nice day at school, really liked the math (improper fractions) and is having fun team-writing a story ("Three Godzillas and the Big Pig"). He says that the team is having fun, except for one kid who thinks everything that he says should be in the story. Oh well, we all have to learn those sorts of lessons in life sooner or later.

After school, Chris decided to forego "dunch" and went home to do his homework before going to his religious education class. He really doesn't care for the pace of activities on "Terrible Tuesday" but does like linking up with his friends. During "God school," Chris became custodian of a chalice, which apparently circulates among the students along with a prayer card. Since there will be no class next week, Chris will have it for two weeks. While Chris was in class, Dad made an appointment for Chris to see Father Bill. Father Bill reviewed Chris' work for the Cub Scout religious award that Chris received last month. At the time, he asked Chris to let him see the award because he had only seen a picture of one. Chris has been trying to do that, but it's not so easy because Father Bill keeps a very busy schedule, especially at this time of year. They'll be able to get together on April 27th.

Right after "God school" this afternoon, the guys walked over to a pizza place that serves Chicago style pizza, which Chris sort of likes. Surprisingly, both he and Dad didn't eat much (and Dad had only had a banana up to that time). The guys barely had time to go home, drop off the leftover pizza, get Chris into his Cub Scout uniform, walk Genie, and get off to the Cub Scout meeting (that's why he doesn't like "Terrible Tuesday").

The Scout meeting was fun; the boys are working toward the athlete pin. Luckily, Chris earned his pin last summer before he started his current relapse chemo treatment plan. Then, he made all of the requirements for the pin, but today, he struggled. On top of eight more months of chemo, most of Chris' blood counts are low, so he just barely had the "oomph" to even do the tasks, much less excel at them. He was discouraged, and it showed on his face as he tried to do the jumps, sit-ups, and pushups. Immediately after the Scout meeting, he and Mom (who joined the meeting in progress) hung out in the parking lot for a little while because Chris was dealing with stomach cramps and nausea. They slowly walked back into the classroom where the meeting had taken place (which fortunately had not yet been locked for the night) so that Chris could visit the bathroom. Mom gave him a Benedryl to help settle his stomach, and eventually, Chris felt well enough to fasten the seatbelt and be able to travel home. Although he still felt nauseated upon arrival at home, Chris continued to feel better, and by the time it was time to go to bed, he was downright energetic.

Medically, things went well up until the stomach cramps and nausea this evening. The school nurse mentioned to Dad that she is interested in seeing Chris' most recent hearing test results. The school district's mobile unit had "discovered" significant hearing loss a few months ago. In the meantime, Chris visited the audiologist at the Tampa clinic, where he underwent a more comprehensive exam. Not unexpectedly, that test had confirmed what we already know: Chris has suffered moderate to profound hearing loss at the higher frequencies as a result of some of his treatment over the years. Thankfully though, that hearing loss is generally at the higher ranges, so it hasn't yet seemed to have affected him in the classroom. In addition, Dad and a doctor from Memorial Sloan-Kettering Cancer Center in Manhattan have played phone tag. Maybe tomorrow they'll make contact.

Joke of the day -- What's the nearest thing to silver? The Lone Ranger's bottom.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, April 5, 2004 9:34 PM CDT

Hi Everybuddy!

Chris did a good job keeping a secret that he forgot that he was supposed to forget. The object was NOT to wish Mom a Happy Birthday. The guys didn't, although Chris had forgotten to forget to not to wish Mom a Happy Birthday. Whew! Of course Mom wondered what was up since the guys normally go wild before breakfast. The guys had a surprise party (or rather Dad was trying to teach Chris about how to do a surprise party). It worked out pretty well once Chris remembered half of what he had forgotten.

The day started for Chris heading to the Tampa Clinic. He was a little tired during the wakeup effort, either because he stayed up too late (as he tried to do too often), the change in time, or because Genie spent the night in his room (she can move about a lot at night), or any combination of the above. Chris got his usual finger poke. His blood test results were: white blood cells dropped to 1.6 (normal: 4.0 - 12.0), hemoglobin dropped to 9.8 (normal: 11.5 - 14.5), platelets dropped to 27 (normal: 150 - 450), while his ANC dropped to 500 (normal: 1400 - 7400). The doctor examined him and cleared him for school despite the low ANC. She also ordered that he begin the G-CSF leg shots again. Although there still are no formal medical scan results back yet (unbelievable), but the doctor had managed to listen to the radiologist's dictation tape (now that is someone eager to learn the facts!). Basically, the radiologist believes that the tumors have diminished in size. The doctor didn't recall anything about the "weird" left lobe. Hopefully this confirms what Dad thought that he saw during the MIBG scan: less illuminate area. She and Dad also agreed that another cycle of Irinotecan would be good (it seems to be doing Chris some good), but they also discussed trying to identify a time or event where it might be wise to switch Chris to a different type of treatment (e.g., like antibodies or a vaccine). As you have heard from us before, neuroblastoma is suspected to adapt to certain treatments, essentially becoming resistant to it eventually.

Chris also turned in his (ok, his and Dad's) work on designs for two possible Christmas cards for Tampa's Children's Cancer Center. Dad needed to help Chris to get it finished up before the deadline and so they could move on to some scouting things.

Dad dropped Chris off at school after the clinic visit, as well as some of the stuff for the upcoming pilot test of the volunteer program. Chris helped. He and another classmate were happy to hear that their idea for a mascot had been incorporated into a briefing for the fifth graders (the test group). When Dad picked Chris up from school this afternoon, Chris was quiet. It was report card day. We're not sure why he reacted that way since he got all A's and B's. (Chris had warned Mom a couple of nights ago that he was not expecting the best of grades this time, so even he should have been pleasantly surprised.) We can certainly live with those kinds of grades, particularly in light of the sad tardy and absent counts. He has missed about 1/3 of his morning classtime due to medical appointments (it's not unusual for him to report to school under the influence of "sleepy drugs," too, or dealing with adverse effects like diarrhea or upset stomach). We can only imagine how much effort he must expend just to keep up with his classmates. We discussed some ideas on how to improve some of his scores (like the "B" in reading -- he reads all of the time). Nonetheless, it's a report card to be proud of.

Sometime during the afternoon before picking up Chris, Dad called Mom to ensure that they had adequate warning of her arrival so that she did not surprise the surprisers. She caught on to the "no birthday wish thing" this morning, but let it ride without saying anything. She called home to let the guys know when she was going to arrive home after work, just as she always does. Well, Mom dutifully walked in to her surprise with streamers being thrown and party whistles being blown. Genie was supposed to greet her too, but the streamers were just too much for her. Mom got the bane of many kids on their birthdays: clothes. She, however, was happy to get them. Also, after her effort on Saturday to get some new glasses, the guys took care of her by getting her a pair of gag glasses that make "coke bottle" glasses look thin. Mom got her revenge by actually wearing them at the restaurant. Geesh! Chris snuck off during the meal to "go to the bathroom." Instead, he coordinated with our server (also named Alison) to get Mom a Happy Birthday wish. A group of servers showed up at the table after dinner and sang her "Happy Birthday" (would you believe she wore the glasses then, too)? She said that she'd sit through it again anytime: the birthday delight was a slice of delicious chocolate cheese cake. We then stopped at the bookstore next-door, where again Chris came up with some books.

This afternoon the guys played keep-a-way with Genie. It was like the movie "Rollerball" as Genie was just awesome. Mom later joined in before we all went out to dinner. Genie was very careful about getting to close to Chris with the ball in her mouth; she remembered his "Ball Dance."

Medically, things went well but for some morning stomach cramps and diarrhea. He now has another loose tooth. It is the opposite bottom tooth of the one he just lost.

Joke of the day -- What do you always get on your birthday? Another year older.

Happy Birthday Mom!

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, April 4, 2004 9:12 PM CDT

Hi Everybuddy!

Chris didn't have much trouble with last night's time change, but Genie did. She got Dad up earlier than usual. Chris decided upon a pop tart for breakfast this morning, which he ate and took his medicines in quick order so that he could get to church. After Mass, the two headed over for some pizza to bring home. Chris ate several slices for lunch, as if he had been starving. Later, we did a little bit of shopping, which was when Chris spent a large part of his time dancing through the aisles. It was funny to watch him pick up and load into the cart an 18 pack of paper towels. The way he did it, one might think that Chris had studied yoga.

This evening, we went out for dinner to celebrate Mom and Dad's anniversary, and stopped at a bookstore on the way back home. Chris picked out two new books (thanks Grannylin and Granddad). Speaking of Grannylin and Granddad, they called today, as did Uncle Alex.

Genie enjoyed a really good day, especially the after dinner workout. She was the center of a three-way keep-a-way game. She still managed to end up with the ball most of the time.

Medically, Chris had a good time but had a little diarrhea this morning. He also has a spot on his surgical scar (from his surgery in 1999) that is a little inflamed. That is being treated with a topical antibiotic type ointment. He also has his fair share of petechiae and bruises, so the usual blood test will be on tomorrow's agenda.

Joke of the day -- Why don't anteaters get sick? Because they're full of anty-bodies.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, April 3, 2004 8:45 PM CST

Hi Everybuddy!

Chris really had a nice day today. We let him sleep late, but not too late, so that he could make it to a midmorning Easter egg hunt at the church next to his school. The pastor had personally invited Chris on several occasions and Chris was interested in going. It was a nice affair with a hunt and several different games for the kids. Chris enjoyed the event. One lady came up and told Mom that she really appreciated Chris giving her young daughter an egg that he had found; she was having trouble locating any eggs. Chris spoke to the pastor, although he never "saw" him. The pastor was dressed up like the Easter Bunny. The Easter Bunny asked Chris if he knew who he was. Because there was a little child next to him, Chris wisely opted to say, "The Easter Bunny" instead of saying the pastor's name.

We left just before the kids were taken into the family center for cookies; Chris isn't too much of a cookie fan. Instead he opted for Mel's Hot Dogs. We got to Mel's just before a huge rush of customers. Chris picked up the order (mostly to say hi to all the staff who know him). He was impressed as usual with Mel's hot dogs and took upon himself to research when Mel started the restaurant: 1973.

The next stop was a surprise to everyone: we stopped by the eye doctor's office so that Mom could get an eye exam and new glasses (she has worn contact lenses for a while, but her back up eyeglasses have become so dated that they really are no longer helpful). Her new glasses should be ready on Friday, in frames that Mr. Chris helped select. He was putting on quite the fashion show with the glasses, mostly for the benefit of one of the ladies who works there. He also entertained himself by spinning around and around on the office chair to the point that anyone would have been dizzy. Chris got up and walked in a straight line as if nothing unusual had happened.

We took a quick break to go home and walked Genie before heading off to go see the movie, "Scooby Doo 2." It's still Scoobie Doo, so what can we say but that it was more fun and a better movie than the first Scooby Doo movie. It had its fair share of "kid grossness," which Chris, of course, enjoyed. Afterwards, we made a supermarket run, where Chris was helpful but not much interested in shopping.

Tonight there was an unusually energetic "dog pile." Genie was a crazy dog, perhaps from having been home alone for so long today. She ran around the house,
jumped up on the dog pile bed, snipped playfully at Chris and or Dad, then ran around some more. We grew tired just watching her. Chris had also been talking about watching the Nickelodeon "Kid's Choice Awards" for weeks, but when it finally came on tonight, he went back to his room to read. We can never really figure him out. Reading is fine by us though.

Medically, things were cool with no problems.

Joke of the day -- A termite walks into a barroom and asks, "Is the bar tender here?"

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, April 2, 2004 9:21 PM CST

Hi Everybuddy!

Today was a nice quick medical day for Chris. There also was some very good family news: Uncle Brian has returned from Iraq and is safely (and happily) back in the US. Chris' first act of the day was a trip to the Tampa Clinic for the usual finger poke. Chris' blood test results were: white blood cells rose to 2.2 (normal: 4.0 - 12.0), hemoglobin rose to 11.3 (normal: 11.5 - 14.5), platelets were 69 (normal: 150 - 450 - due to Wednesday's transfusion), while his ANC remained at 700 (normal: 1400 - 7400). Regrettably, we didn't receive any new medical scan results although the team here is now putting on the full court press in order to speed up the result reporting. They decided to slide next week's chemo until after they see the scan results. Also, we finished the coordination for Chris' bone marrow aspirates next Friday.

Dad walked into school with Chris and dropped him off, and then the two thought that they'd link up at the library (Dad was going to be there copying things for next week's pilot test of the volunteer program). However, Chris wasn't able to get to the library. Chris had a good time at school and it seems that he always has his teacher laughing when Dad picks him up in the afternoon. Today Chris was surprised since he and Dad were taken home in someone else's car. The mother of one of Chris' classmates helped Dad put together several books needed for next week's test of the student volunteer program. They hadn't quite finished, so both families returned to our house. While the adults finished things up, the kids played. The girl really liked Chris' treehouse (everyone always does) and his flying turtle. They also put out spy sensors out to "catch" the adults. Actually, both kids were sorry to hear that the adults had finished their work since that meant that his classmate had to go home. Interestingly, the kids helped resolve Dad's difficulty in trying to develop a "mascot" for the volunteer program. Their suggestion was the "Friendly Flipper" (based on their school's mascot, a manatee). Chris said that it would look like a flipper grasping a human's hand. Dad thinks it's not too bad an idea, actually. Oh yeah, the kids want the mascot should be named "Maggie Manatee."

Once things settled down, Chris watched TV while waiting for Mom to come home. It also seemed to Dad that there was once marathon dog pile going on since Chris and Genie were battling for the bed. It was noisy but fun to watch. He also took a break long enough to speak with Grandma and Grandpa today; it is their bazillionth year anniversary!

When Mom got home from work this evening, Chris conned her into going to his' recently proclaimed "Becker Family Hangout" for pizza. It didn't take much to get us going. Once we got home after dinner, Mom called Grannylin and Granddad to see if they had heard from Uncle Brian. Sure enough, they had. Uncle Brian is back safe and sound. Chris didn't get to speak with them, but he did say hello and welcome back to Uncle Brian directly, since he called not long after Mom hung up after Grannylin's conversation. He had been quite concerned, but when he was actually speaking with Uncle Brian, we could hear his energy peter out (it was past his bedtime), so he speak with Uncle Brian for very long.

Medically, things were good, as was his weight and energy are good. Chris did not have any complaints at all today.

Joke of the day -- Teacher: Why is the Mississippi such an unusual river? Pupil: Because it has four eyes and can't see.

Welcome back Uncle Brian! Happy Anniversary Grandma and Grandpa!

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, April 1, 2004 8:56 PM CST

Hi Everybuddy!

Today was a little out of normal since it was, of course, April Fools' Day. Chris reported that only one prank was pulled in class today and that was by the teacher. However, before Chris had a chance to report that to Dad, Chris' teacher reported that the inspiration and idea for the prank came from Chris. The gist of it was that when the class got back into the classroom after lunch, the teacher acted "upset" because of the class' poor behavior. Because of that, they were to copy from the dictionary. That drew a lot of sad faces (although his teacher isn't really like that and has never done anything like that before) -- they didn't get it until of course she said. "April Fool!" Chris then told Dad that the whole class had been fooled.

Chris and Dad blundered into another chess club meeting. Chris stayed for the meeting. Today, they played individual games according to tournament rules and times. Chris lost both of his games. He was seated at the table with one of his classmates and also the same girl with whom he was a teammate with last meeting. He actually got her in trouble by doing/saying something funny which got her laughing. She was cautioned by the officials. Chris apologized to her after they were spoken to after the meeting (they were told to remain in their seats). Well, it just so happens that she walked out from school the same way the Chris does, and it was obvious that she didn't bear any grudges for getting chewed out. She was interested in knowing if he went to the same church as she did (she is in her church's choir). She is also a fourth grader but assigned to a different classroom.

Chris was disappointed at lunch time. The bulletin said that chicken was going to be on the menu today. The closed circuit TV show, "The Morning Show," announced that there would be chicken today. Instead, it was tacos. Chris just had a taste for chicken. He must have really wanted chicken, too, because as soon as the chess club meeting was over, he asked to go to McDonalds for some chicken McNuggets. Dad took him there, too.

After Chris finished eating, the guys worked on getting some things ready for the pilot test of the student volunteer program and of course played with Genie. Genie has more moves than a defensive end and dominated the game of keep-a-way. Dad wasn't sure if Chris was favoring her or if she's just gotten that good.

Medically, things were very good. He had no problems with anything and the new tooth situation looks favorable.

Joke of the day -- What do you get if you cross a dog with a prankster's holiday? April Drool's Day!

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, March 31, 2004 9:34 PM CST

Hi Everybuddy!

Today turned out to be another long medical day for Chris. After the usual morning stuff (with Genie performing admirably on wake up duty), the guys traveled to the Tampa Clinic for the usual finger poke. Chris' blood test results were: white blood cells dropped to 1.8 (normal: 4.0 - 12.0), hemoglobin rose to 10.3 (normal: 11.5 - 14.5), platelets dropped to 19 (normal: 150 - 450), while his ANC dropped to 700 (normal: 1400 - 7400). Chris was invited back for a platelet transfusion after school. The guys went right to school, where Chris joined his class, even though he thought that stopping at Burger King for a mid morning breakfast might be a good idea. Since his weight was good, he got overruled by Dad.

Dad left Chris' school only for a short while and then returned there for the PTA meeting. He always checks in with the school nurse, who surprisingly appreciates it when he does, as she has been known to call from time-to-time. Dad finished up his business in time to pick up Chris and drag him to another meeting about the student volunteer program. Chris just wants the program to start and is tired of the meetings. Today, he stayed outside of the meeting in the principal's' office and did his homework. Coincidentally, one of the other parents attending has a daughter in Chris' class, so the two students worked together on math homework during the meeting. They both were stumped on one problem and couldn't figure it out. As luck would have it, their teacher showed up and was impressed that they were doing their homework, so she helped them with their common problem. Chris was finished by the time Dad walked out of the meeting to take him back to the clinic to get his platelet transfusion. Chris watched a movie during the transfusion instead of doing homework; he was happy.

The guys stopped to get some afterschool snacks for Chris, then they went back to the clinic. The transfusion went like clockwork. Chris watched the movie, "What a Girl Wants" starring Amanda Bynes. He really likes the music (and so did the nurses). He got the nurse with whom he loves to clown around (we think that the feeling is mutual). Once she heparinized his mediport, the guys had a waiting period (in case there is a late reaction to the blood product). That's when the two decided to play "bumper cars" with the office chairs. It was as realistic as the bumper cars at a carnival; neither one of them cut the other one any slack. They had a great time. Today was "Doctor's Day," which caught Chris and Dad unawares. They huddled and developed a gift idea that ended up being an inflated surgical glove with a happy face pin stuffed up the index finger so it very loosely looked like a weird happy faced rooster. She looked quite surprised. Well, at least it is a very nice pin. Thank you Blood Team!

After the required waiting period, Chris' mediport was de-accessed and he was released. The guys refreshed their depleted supplies of happy face pins. Chris has probably given out over two hundred well deserved happy face pins to the many people that have helped him over the years. He was sophisticated enough to know that the pins he has given out barely scratch the surface of all the people who have provided him help and support. Isn't that the truth!

Once home, Chris ran in to get Genie. For some reason, Genie was on his mind a lot today. At one point, Chris had an empty plastic soda bottle in his mouth at the clinic and acted like Genie would done with the thing. It had the staff in hysterics; one of the nurse's dogs does the same thing. It was too close to home. Chris had been on overdrive (in a goofy, happy sort of way) after the platelet transfusion, but he quickly became quiet after a few minutes in the store. He was quite himself again by the time they got home though.

Medically, things were just ok. The socket area his tooth was in looks great, almost as if the tooth came out days ago. The nurses clearly saw the new tooth but were a bit surprised when Chris told them that he had forgotten to check to see if the tooth fairy had taken his old tooth or left him anything..improved (it's true, Chris forgot to check under his pillow until about 7 p.m.). Chris had a few sessions of nausea and stomach cramps today.

Joke of the day -- What monster plays the most April Fool's jokes? Prankenstein.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, March 30, 2004 9:25 PM CST

Hi Everybuddy!

Today was a normal kid's day. Genie got Chris going of course, then it was breakfast as usual (although perhaps a cup full of medicines may not be normal to some people), before heading on to school. Drop-off at school was a "pony express" thing; Chris is getting better about being prepared and getting out of the car quickly. He tries to beat his record for safely leaving the vehicle.

The highlight of school was that the chicken fries Chris had for lunch. We still don't know what they are or who makes them, but Chris surely likes them. (Who knows, maybe Dad will drop by the cafeteria tomorrow to see if he could learn more about the stuff.) Chris had some fun in math and writing, although he says that writing is not as much fun than before because the new teacher makes the students write about real stories. His former teacher used to let them write fiction, which Chris prefers. The rule didn't seem to hold for homework tonight though. Chris had to write sentences using ten vocabulary words; he decided to group them as to make a story. The first four words were used in a series of sentences telling a story about nocturnal dust bunnies.

Today was a not so terrible Tuesday since there was no Cub Scout meeting tonight. Chris went to his usual religious education class, where Chris was selected to play Jesus on their Palm Sunday reenactment.

Once home, the guys started to watch the movie, "Legally Blonde II." Chris loves the Chihuahua, "Bruiser." He likes the silly humor, too. He still is trying to figure out the humor of Bob Newhart. Eventually, Mom joined us (she returned to work today). Mom's return home tonight coincided with the departure of Chris' loose tooth. Hopefully Dad did it correctly, but the guys decided that today was the day. It had somehow loosened quite a bit on its own. They mutually decide that the tooth had to go. Unfortunately, Chris' platelets were pretty low, so there was an hour long effort to stop blood seepage after the tooth came out. Mom hoped the tooth would just come out on its own, but the guys decided that when it's ready, it's ready. Chris reported that he could even feel the new tooth in the socket. Mom could indeed see it once the seepage stopped. He used his toothette and special mouthwash tonight.

Since things were messed up and Dad needed to get a book to learn a new software, we went out for dinner. Chris has some spaghetti, macaroni and cheese, and the softest Jell-O he could find. He tried but couldn't eat much. At least the tooth socket didn't open up again. Chris made a beeline to the bookstore and found a book for which he's been looking.

Medically, things went well. The school nurse made sure that she saw Dad after school to give him a chicken pox update. She was very thorough in her investigation and protection of Chris yesterday. She and our clinic nurse felt that Chris was not at risk. We really appreciate her professionalism and all the effort she went to on Chris' behalf.

Joke of the day -- Dad, can you help me find the lowest common denominator in this problem please? Don't tell me that they haven't found it yet, I remember looking for it when I was a boy.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, March 29, 2004 9:40 PM CST

Hi Everybuddy!

Genie and Dad had a hard time getting "Spring Break Chris" awake this morning. Yet, as always, perseverance paid off. After a nice breakfast and some cartoon watching, the guys headed off to the Tampa Clinic. There was only one test result available from last week's medical testing. It was for the urine test: the relevant factors (HVA and VMA) were in the normal range. Dad also received the results of Chris' last full panel (liver function) test and today's routine blood test. The significant information from Chris' most recent "full panel" blood test are the following: ALT dropped to 63 (normal: 12 - 34), AST rose to 60 (normal: 22 - 44), and BUN/CRE Ratio remained at 18 (normal: 15 - 24). Those are pretty good numbers for Chris. His blood test results were: white blood cells rose to 2.3 (normal: 4.0 - 12.0), hemoglobin rose to 10.5 (normal: 11.5 - 14.5), platelets dropped to 35 (normal: 150 - 450), while his ANC rose to 1000 (normal: 1400 - 7400).

The guys' next stop was school, where Chris reluctantly headed back only because he knew that he must (he's obviously come a long way since last year, when he was attending "real school" for the first time and was so full of wide-eyed enthusiasm). Chris was nostalgic for the days of homebound lessons, which were fun and educational. Drop-off went well, but Dad was not gone from there for even an hour when he got the word (through Mom, who was ill at home today) that the school nurse reported that there were at least three confirmed cases of chicken pox among the fifth graders. A parent of one of those children even brought that child to school to have the school nurse "officially" diagnose it as chicken pox (aside from the fact that nurses cannot make diagnoses and aside from Chris' medical concerns, that sort of thoughlessness potentially exposed a number of children needlessly to the disease. That's the sort of thing that starts school outbreaks.) Thankfully, the school nurse immediately called us to alert us to the situation and tried to ascertain whether Chris may have been around any of these children or their siblings (to the best of our knowledge, the answer was no). A nurse at the Tampa clinic confirmed that Chris is not considered to be at risk unless he is in close contact with someone with a confirmed case of chicken pox (siblings don't count unless they get it, too) for at least 10 minutes. The school nurse released Chris back to his class. Of course, we're rather impressed by the school nurse and our nurses at the clinic. The whole thing was handled in less than thirty minutes.

Chicken pox is a much more serious health concern for patients like Chris with suppressed immune systems. It also presents a problem if Chris should contract it then inadvertently pass it on to other cancer patients (before the symptoms appear). It has been known to preclude kids from receiving treatment until after they recover, and recovery can take longer than for "normal" kids. Chris received the chicken pox vaccine over 5 years ago, but he's received an awful lot of heavy chemotherapy (and two bone marrow transplants) in the meantime, so who really knows how strong his defenses are against the disease? Later, Dad spoke with Chris' teacher, who said that she'd keep an eye out among her students who may manifest chicken pox symptoms. Chris is taking it all in stride. He thinks it would be "cool" to put up with a little bit of "itchies" in order to get maybe a couple of weeks off from school. Little does he know how miserable that can be . . . hopefully it will stay that way, too.

When Dad picked up Chris after school, Mom was so out of it that she fell asleep. So Dad took Chris off to the store, where Chris got a pizza (we know he eats at school, but he is usually very hungry afterwards). They then went shopping for an electronic journal for Chris that opens using voice recognition software. It took a while, but Chris finally got it to work consistently. He is the only one who can open his journal (as it should be).

Once home, Chris snuck in but was delighted to learn that Mom was awake by then. She was movingly slowly, but the two experimented with the journal and watched a new Batman/Batwoman movie. Chris also got his homework finished. After the late "dunch," then a snack, Chris still enjoyed a hearty ham dinner. (He really only picked at it, but still did ok considering how much he ate just a couple of hours beforehand. Maybe he's getting ready for a growth spurt?) Weight loss was not a terribly big factor after these last two cycles of chemo, so maybe the Vantin medicine did help.

With Mom watching on, Chris, Genie, and Dad had a marathon game of keep-a-way. Genie repositioned herself from her usual sniping position because Dad had the vacuum cleaner near where she normal stalks the ball. She developed a very clever strategy of playing a close "man-to-man" with Chris, with good effect. Chris also started something that he calls the "ball dance" with Genie in order to get her to release the ball. He picks up her two front paws and dances. She drops the ball to nip at his hands, and when she does, she releases the ball. Chris then releases her paws and makes a fast break for the ball. She hasn't figured how to beat the new move yet . . . but she will!

All went pretty well until bath time, when Chris called us in to look at a new rash that suddenly appeared on both thighs. The areas were reddened (with petechiae, obviously like Chris had been scratching them) with small white blotches similar to hives. While we did not really think that it was chicken pox, it was funny how it suddenly appeared after having heard the warning. It began clearing up soon after Mom gave Chris some Benedryl. Dad will however, advise the clinic of it on Wednesday.

Medically, things were quite good with no problems save for the mystery rash. Chris continues to hang on to that tooth.

Joke of the day -- What do you get if you cross a border collie with a rose? A collie-flower.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, March 28, 2004 9:13 PM CST

Hi Everybuddy!

Chris and Mom returned from camping and they had a great time. Chris had a little tummy trouble this morning so they didn't stay for all of the morning activities. Almost home, he decided that maybe he'd feel better if he had something to eat; he specifically asked for a hot dog breakfast. That did the trick. Chris felt well enough then to continue on to church. There they saw a tired-looking Greg and his mom, both of whom had been camping with them this weekend.

The activities during the "Mom and Me" camping trip were pretty extensive and the scouts really enjoyed the pirates theme of the camp. The standout event was clearly the obstacle course, called "Captain's Cove." The volunteer pirates, separated the boys from the moms. They "tied" the moms to a rope with lots of shorter pieces of rope tied to it (looped a short rope over the mom's wrist), then asked the boys to rescue their mom. The boys had to climb a "gangway" (a wooden obstacle typically used to train dogs to climb ladders), then "walk the plank" before "wrestling" and "roping" an (inflatable) alligator. After taming the alligator, each boy had to pull it across a tarp by the rope, tickle its belly to make it "fall asleep" and untie it so that the next boy could compete. Then each scout had to toss at least three inflatable fish back into the water (presumably they just flopped up on "deck" of the imaginary pirate ship), hop across the "deck" in a potato sack, eat a (gummi) worm with a smile on his face and pick up a tan-a-gram puzzle piece from the sandbox before the mom could be rescued. Once the mom had been rescued, the boy got "tied" up as a prisoner, and the mom had to do the same obstacle course in order to rescue each son. A couple of moms wanted to know how much they could pay the pirates to keep their boys as prisoners, but the pirates just groaned, "Arrrgghh." All of the scouts were rescued, and they were able to eventually figure out the tan-a-gram puzzle, too, after all of the puzzle pieces were brought in by each player. There were several other fun events, too, including: slingshot practice (shooting pebbles at pie tins and 2 liter bottles), water balloon fights, learning a skit for campfire time, making cardboard swords, eyepatches and "booty bags," working with a teammate to carry a full-sized cardboard version of a rowboat through a "landlubber's obstacle course" while making tight turns following channel markers, and following compass directions (including counting paces) to see where X marked the spot).

After church, the two brought home some pizza; Chris said that he just HAD to have pizza. When Dad finally saw him, Chris looked great, although it was soon apparent that Chris thought that he was hungrier than he actually was. Nonetheless, he put down three slices of pizza and he didn't loose much weight after the last two cycles of chemo. With near perfect timing, Chris received a telephone call from Greg just as soon as he finished eating lunch, and was invited over to his house to play this afternoon. Obviously playing together all day yesterday was not enough. Their afternoon started off with a Yu-Gi-Oh game, which Chris managed to win (to our surprise since that was his first competition). They also rode bikes and goofed off outdoors and such. Chris had a very good time.

Chris got home and was eager to hear if his friend Michael Anthony had called (he and his family were visiting Tampa this weekend). Unfortunately, we got a call, but due to the camping trip and a conflict in schedules, the kids didn't get to goof off together. Chris understood what happened and said that they'll just have to get together the next time we're in the Miami area.

We got an e-mail from Uncle Brian, who is currently in Kuwait. Chris was happy to learn that he's expecting to leave Kuwait on April 1st, and should be back in the U.S. sometime of the morning of April 2nd. Yeah!

Genie had a very good day since she got to play with her friend, Hooch, twice today. Hooch is a little smaller and younger than Genie, but she can hold her own against our girl. The two are great fun to watch and Chris was sorry that he missed their antics today.

Medically, Chris had some early morning tummy troubles that a little time and breakfast cured. Bedtime brought on some more tummy woes, but Benedryl settled that down. Chris didn't have any other problems to report but does have a new scratch on his face from dog-piling with Genie. The tooth is still there.

Joke of the day -- Why did the firefly get bad grades in school? He wasn't very bright.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, March 27, 2004 8:50 PM CST

Hi Everybuddy!

It was a great day for Chris and he and Mom spent the day (and so far, the night) on a Cub Scout camping trip called a "Mom and Me" camp. Last year was a "Dad and Lad" camp and the boys did a lot of work towards earning some of their badges. That is not the case with a Mom and Me camp. This year's camp theme is "pirates" and Mom reported that they didn't really do any work towards any badges. Mom will provide more information later but Chris' favorite pirate task of the day was an obstacle course rescue of -- Mom. The Mom's were "tied" somewhere down at the end of the obstacle course and the boys had to work through many obstacles (like wrestling and tying an inflatable alligator) to get to their Moms and free them. At which time, the boys were tied and the Moms had to negotiate the course. All Dad can report is that both were very tired (and are now sleeping in the camper) and Mom is hoarse. The food was pretty poor for lunch (peanut butter and jelly on a hamburger bun) but the caterer made up for it at dinner. Tomorrow, the scouts are supposed to get in uniform and attend a morning service and breakfast. Chris, Greg, and Keith are representing Chris patrol, the Scorpions.

Dad spent the day working on the spring cleaning list. He did take a break and see the movie "Hidalgo" with our friend Cate. Both thought that it was a very good and exciting movie. Cate also had some good news that Dad passed on to Mom, Uncle Brian's cavalry unit is supposed to depart Kuwait for the US on the first of April. Chris got a little goofy when he heard that news later in the evening. We'll be very happy when he is safely back home.

Genie is missing her boy. Although Dad has kept her busy, its still not the same. You can tell.

Medically, Mom didn't report any problems and Chris kept up on his drinking. He wore his new Wild Planet camel pack and Mom said that he went through three (1 quart) canteens full of water which is good. No word on the tooth but Dad's pretty sure that Mom would have had something good to say about it if it had come out.

Joke of the day -- Why didn't the boy eat his chocolate bunnies right away? He was waiting for them to multiply!

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, March 26, 2004 9:21 PM CST

Hi Everybuddy!

Chris had an early start today, despite it being spring break. That's on Fridays, the doctor isn't at the Tampa clinic all day, but she must be there for any blood transfusions. If Chris had needed blood products, going to the clinic early might have allowed for the blood to arrive early enough to permit him to receive them before the doctor's departure. As it turned out, he could have slept in a bit longer because he did not need any blood. Chris' blood test results were: white blood cells dropped to 1.9 (normal: 4.0 - 12.0), hemoglobin dropped to 9.5 (normal: 11.5 - 14.5), platelets were 75 (normal: 150 - 450 -- wow, what a boost, thanks Blood Team!), while his ANC remained at 1000 (normal: 1400 - 7400). Chris was cleared to go camping tomorrow with Mom and a million other Cub Scouts this weekend at the "Mom and Me" event. There were no results back from any of this week's medical tests.

After the clinic visit, the guys stopped at a store so that Chris could shop before heading for home. Chris walked Genie and then started playing a new game. Dad fixed him some rice, ham and pineapple (one of his favorite meals in New York) for lunch and then the guys headed off to see a movie. The movie "Confessions of a Teenage Drama Queen" was rated by Chris and Dad as a C+. It was a little disjointed but still fun. Chris loved the music. After the movie (which was in a mall), Dad had a shopping task at the end of the mall (nothing in particular but Chris doesn't mind the exercise if there is a purpose). That quest was a bust, but the two were successful in another endeavor. Dad is happy to report that Chris skipped his way throughout most of the walk. So much for low hemoglobin (low level of oxygen in the blood). One interesting thing happened: Chris was given a surfer's necklace as an Easter present from the lady, a trained radiological technician who gave up that profession to operate her family's jewelry kiosk in the mall. Chris occasionally buys charms for his Italian charm bracelet. The two of them hit it off and she keeps up to date on Chris. Today he stopped by her kiosk on the way to Dad notional shopping event and said hi. They gave each other a hug. She had the necklace for him when we went by to say good-bye after shopping.

The guys made another stop to pick up some medicine and then it was finally time to head home. Once home, Chris dutifully walked Genie, then he went back to playing his game. Interestingly enough, Genie often sits on the couch and "watches" (or so it seems). She often is by his side when he is playing video games. After a while, Chris came out to see if he could help Dad wash the camper, but he ended up riding his scooter. On one pass on the neighbor's driveway, our neighbor's cat (Hershey D. Cat) came out; the two of them sat down for about twenty minutes, just hanging out with each other. Unfortunately. Genie could see them through the front window and she nearly went hoarse barking at her boy and "that cat." Genie and Hershey never have formally met; Hershey does a good job of avoiding Genie like the plague. Genie however, wants to meet the cat; she was raised in a house with two cats.

Our friend Les came by after work and dropped off his daughter's automated chess game. She found it for Chris in her stuff before she went back to college. Les taught Chris how to use the device. It looks very interesting. Chris also spoke with Grandma and Grandpa, but Dad wasn't a party to the conversation.

Medically, Chris didn't have any problems and tonight he finished the last dose of Temodar for this cycle. The tooth is still there.

Joke of the day -- "Why are you studying your Easter candy?" "I'm trying to decide which came first: the chocolate chicken or the chocolate egg."

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, March 25, 2004 9:18 PM CST

Hi Everybuddy!

Per Chris' request yesterday, he was allowed to sleep in late this morning -- if you can call 9:00 a.m. late. Dad, working in the home office, heard something moving in the master bedroom. It turned out to be Chris and Genie trying to sneak their way into bed. After breakfast, Chris asked if he could do something fun today, like go to Chuck E. Cheese. So they did (Genie wasn't invited, though).

Perhaps a bit surprising, the guys found that Chuck E. Cheese was already crowded at 11 a.m. Dad got Chris a pizza for lunch and a big bunch of tokens. Chris was in hog heaven! He was very good at playing a number of the games, earning enough tickets to fill up three tightly packed cups (a total of 733 tickets). He decided to save the ticket receipt for a later visit. Chris had a great time and ate half of the pizza all by himself. Chris performed a good deed for the day. He watched a little boy "play" a bowling game (actually, the little boy didn't have any token to be able to play it but was going through the motions). Somehow Chris snuck up to the token slot and dropped a token in for the boy while passing (just like a perfect spy message drop). The game actually began to respond to the boy's input, and Chris said that the boy won quite a few tickets. The little boy never figured out how the game finally started to work.

After lunch, the guys went on a shopping quest, visiting six stores that we've driven by for years but have never stopped at to shop. That changed today, and by the time it was all over, Chris was worn out. One place at which the guys stopped sold ultra modern (weird) furniture. Chris loved it and he said that is where he'll shop for furniture in the future. We'll see. They do sell a lot of neon flamingos, so they can't be all bad . . .

When the guys got home, Chris walked Genie, then the three enjoyed a massive play period. Genie loves playing keep-a-way with a tennis ball. Today she was exceptionally good at bringing it back to either Chris or Dad after she intercepted the ball. She made one spectacular over her back catch and even landed on her feet. Both Chris and Dad were awed and disappointed that she ended their longest keep-a-way streak at twenty tosses (she's good). Chris spent much of the remaining time before Mom got home reading.

Dad whipped up some things for dinner and Chris put on a Veggie Tales movie that has a song called "Barbara Manatee." It will be plaguing Mom all weekend. She and Chris danced something that only vaguely looked like the tango to the song (which is tango music).

Medically, Chris did well today and didn't have any complaints until right before bed: stomach cramps. He still has that darn tooth.

Joke of the day -- (continuing in the spirit) -- Did you hear about the lady whose house was infested with Easter eggs? She had to call an eggs-terminator.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, March 24, 2004 9:40 PM CST

Hi Everybuddy!

It was another one of those medical days that dragged on and was filled with good and bad. Today was Chris' very long MIBG scan, so the guys spent the bulk of their day over at the hospital. Before that though, Chris and Pat went to the Tampa Clinic for finger poke. Things are looking promising even though he is on the chemo agent Temodar. Blood was also drawn in order to check the counts; Chris' blood test results were: white blood cells rose to 2.0 (normal: 4.0 - 12.0), hemoglobin rose to 10.00 (normal: 11.5 - 14.5), platelets dropped to 27 (normal: 150 - 450), while his ANC rose to 1000 (normal: 1400 - 7400). The decision was to hold off on any transfusions until after Friday's blood test results. So, the next stop was at a Coast Guard air station for a mission, then on to the hospital. Chris thought that the Coast Guard place was interesting since they had a lot of aircraft.

When Chris and Dad checked in at the hospital's information desk so that Dad could get the mandatory security pass, he discovered that Chris was not on the daily list of expected visitors. Even though they had pre-registered and gone through admissions yesterday, the guys were again told to do so today. That, of course, meant another twenty minute wait, only to get a piece of paper that was identical to that received yesterday. Dad didn't even have to sign any paperwork and today was the second step of something they had started yesterday. All-in-all, the admissions step was again another unnecessary delay. As it turned out, Chris could have used those twenty minutes to start his scan earlier that he did. Dad did however receive a telephone call from the Tampa clinic, requesting him to bring Chris back after his scan. They had some directed donor platelets that were going to expire before his next blood test. Such donations never go to waste and some other child would have received them if Chris didn't. However, Chris was so close to the transfusion point that the doctor wanted to give him those platelets. Once again, thank you Blood Team!!

The Nuclear Medicine crew are long term friends of Chris. The MIBG scan takes a very long time (nearly two hours), but he's allowed to watch TV and the technicians are very funny, caring people. Dad watched the movie along with Chris and kept an eye on the computer. This time, Dad noticed that the area around Chris' liver did not seem to light up much, compared with Dad's past observations. Of course, we don't hold much to Dad's observations since he does not have the medical expertise to make that call, and because we know that differences can occur for many reasons, including computer filters, etc. We'll wait for the radiologist to read and interpret the image for the official report. Nonetheless, it was encouraging not seeing any particularly white spots on the screen. Chris has decided that it's time to nominate the chief technician for employee of the month. She deserves it, too.

Once free from the scanner, the guys went back down to the oncology ward, where they were surprised to find that they saw only one familiar nurse. They then headed for an interesting bookstore in St. Petersburg that Chris likes to visit. Since he had a mission from Grandma and a few minutes to spare, they did. He bought two books: one of his favorite "choose your own adventure" books and one on how to create trick photography (mom's already been the subject of a trick skateboard picture). If any of them turn out (they're on regular 35 mm film, so Chris needs to shoot up the film so we can get them developed "the old-fashioned" way).

After arriving back at the Tampa clinic, Chris' mediport had to be accessed before he entered the transfusion room. The transfusion went quite well and Chris watched the end of the movie "Shrek" and all of "Spy Kids 2." The head nurse's granddaughter, a very mature two year old, came in to visit; Chris thought that she was nice. He gave her a happy face pin, which she loved. Chris goofed around with some of the nurses today, but he was more tired than he usually is, so it was pretty tame this afternoon. After the two hour infusion of a large quantity of platelets, the guys stopped by Toys R Us so that Chris could look into getting a particular game which he found. (Thanks Grandma!)

Once home, Chris walked Genie, then the threesome (Chris, Dad and Genie) helped relieve Genie pent-up energy (that's been happening a lot this week). During one session of keep-a-way, the ball bounced off a door and hit Chris in the eye. He was not happy about that. Dad put a cold, damp paper towel on the eye. Within five minutes, Chris was back in the game.

Medically, things improved, although Chris had to suffer through one bout of diarrhea. Yes, the tooth is still there. Chris and Dad might work on that tomorrow.

Joke of the day -- (continuing in the spirit) -- What would you get if you crossed the Easter Bunny with Chinese food? Hop suey.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, March 23, 2004 9:52 PM CST

Hi Everybuddy!

It was a good hospital day but for two glitches. Chris had a CT scan today and had to get the isotope injection for tomorrow's MIBG scan. The CT scan went well except for having to go to the admissions office despite having pre-registered for today's visit. That in itself wasn't bad, but the signing procedures for admissions is abominable. That department seems to be declining over the past 4 1/2 years. You have to sign in at a desk located across the room from the actual admissions area; the staff members there lately never seem energized enough to get up and see if anyone has signed in. (That's too bad because for first time patients, they're often the first hospital employees the patients meet.) Chris and Dad waited patiently for twenty minutes before Dad went up and asked when Chris was to come see them; the response: "oh, you're waiting? Did you sign in?" Dad and the admissions clerk basically went through all of the same questions that were already answered during the pre-admissions telephone call.

The CT scan itself went well and the staff members were nice, as always. Dad recited the story of "Around the World in Eighty Days" (well, at least up to the crossing of the Indian Ocean) for Chris in order to keep him focused so that he didn't move during the scan. Apparently the technicians were listening too over a microphone located somewhere in the scanning room (in order to communication with patients during the scans). They said they'll wait for the rest of the story when Chris comes back for his next quarterly scans. Chris didn't even have a problem with the mid-scan contrast injection (he has vomited because of them in the past). His next stop was at the Nuclear Medicine room, where the guys had a "family reunion" with the technician. Sue has taken care of Chris since May 1999. She now has a new assistant, whom Chris met today.

The big trouble of the day happened when the guys returned to the Radiology Department, where they have nurses who can de-access Chris' mediport. Technically, there is a gap in procedures for outpatient patients who come in for scans. They come in with mediports accessed and "heparinized." The heparin, used to prevent blood clotting around the mediport, gets flushed during the process of getting a CT scan and the MIBG injection. Thus, their mediports need to re-herapinized to help make sure that the mediport does not become clogged, the, if no further use is necessary, the mediport gets de-accessed. The nuclear medicine technicians are not trained nor authorized to do this, while the radiology nurses provide this service more as a courtesy than a prescribed procedure. It looked like this courtesy was again going to be extended to Chris, at least until one of the nurses got called away; another nurse was needed to help Chris get his mediport deaccessed. She apparently didn't see that as part of her job. Consequently, the guys sat in the radiology waiting room for almost two hours. Eventually, the first nurse returned, apologized profusely, and got Chris squared away. It is definitely a gray area, but the nurses normally err on the side of the kids.

While at the hospital, Chris went up to the oncology ward to visit with some of the nurses who have taken care of him all of these years. Every one of these "old-timers" remarked at how tall Chris has gotten and how healthy he appears to be. Of course, they saw him through the "dark ages," including two bone marrow transplants (which can make anyone look poorly). While visiting, Chris also dropped off a slew of books to his hospital teacher. Well, that was his intent. It didn't really go like that, so the guys ended up leaving them with the charge nurse. They'll try to see her tomorrow though. He's good about sharing. Even before going to the hospital today, Chris and Dad stopped by the clinic to donate some puzzles and games.

Once we got to the car, Chris asked to go to McDonalds; he hadn't eaten in about nine hours. Both Chris and Dad were hungry. We have a rule: if Chris doesn't eat, we don't eat. It keeps us in the same perspective as Chris when he is not allowed to eat due to a medical procedure. Before heading home, they also stopped by a nearby Coast Guard station on a special mission. Because of the late departure, traffic heading in the same direction as Dad was driving on the way back home was thick. Chris missed out on stopping by a favorite used book warehouse. Chris was able to kick back and watch movies, such as the VeggieTales movie, "Jonah."

Once home, Chris walked Genie, then the three of them (Chris, Dad and Genie) took a play break; Genie had a lot of pent-up energy. Chris also received a telephone call from Grandma and Grandpa. Grandma gave Chris specific instructions about picking a post-chemo gift. He intends to accept that mission, Grandma. Thanks!

Because "lunch" was late, Chris wanted only a light dinner of chicken noodle soup. He also watched another VeggieTales movie that has a really neat "silly song" called, "I Don't Have a Belly Button." Chris had to get up and dance to that one. He needs a few belly dancing lessons to make it more convincing though.

Medically, things weren't as good as they had been over the past few days. His diarrhea is back. That could be due to the Temodar (chemo), although that hasn't been a side effect of that drug before. For those who may be wondering . . . yup, his tooth is still there.

Joke of the day -- (continuing in the spirit) -- What is Genie's favorite Easter treat? Jelly bones.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, March 22, 2004 9:45 PM CST

Hi Everybuddy!

Genie and Dad let Chris sleep in about 30 extra minutes this morning; he woke up alert and motivated. He suffered through a urine collection first thing this morning -- the first part of the current quarterly testing cycle. Chris' first real order of business was an early stop at the Tampa Clinic. His mediport was accessed in preparation for tomorrow's CT scan and MIBG isotope injection. Blood was also drawn in order to check the counts. His blood test results were: white blood cells dropped to 1.9 (normal: 4.0 - 12.0), hemoglobin dropped to 9.5 (normal: 11.5 - 14.5), platelets were 52 (normal: 150 - 450 - and were higher due to Friday's platelet infusion), while his ANC dropped to 700 (normal: 1400 - 7400). The doctor wanted to make sure that we had G-CSF on hand in order to prop up the immune system if necessary. She also mentioned moving the bone marrow test up into early April. Dad was told to start Chris chemotherapy today using Temodar. The nurses couldn't believe that Chris still had his loose tooth. Surprisingly, the head nurse wouldn't look at the tooth; it is one of the few things that can make her squeamish. The doctor examined Chris; his liver feels normal. She is going to wait for this cycle's test results before contacting Chris' doctors at Memorial Sloan-Kettering to see if there may be other treatment options.

The next stop for the guys was Burger King for some of Chris' beloved Cini-minis. The guys enjoyed a small picnic and finished watching the movie, "Princess Diaries." They then went on to the hardware store and got the last few items to finish the Spring Cleaning closet projects. Once home, Chris heard from his friend Greg, who couldn't come over today due to other commitments (they are both on spring break this week). It looks like Thursday night might be the earliest opportunity for the boys to get together. Chris then got some radios going so that he could keep tabs on Dad, who went back up on the roof. Occasionally, Chris brought some things out to Dad.

Of course, the afternoon involved several dog piles, keep-away games, and other games of just generally goofing off with Genie. Chris and Dad also went through some toys that haven't been played with in a while; Chris set aside more for donation to the hospital. Chris also entertained himself by winding himself in a blanket and looking like a giant Tootsie roll. He was quite impressed by it until Genie playfully nipped at his feet (which were sticking out at the bottom of the "wrap"); then he realized just how immobile he had become.

Due to the spring cleaning and Mom having worked late, we went out for dinner. Chris ate most of his meal, then fell asleep at the table with a piece of bread in his hand. Now that is tired! When we got him back home, Chris stayed awake long enough to take his medicine (including chemo) and get sponge bathed (he can't take a shower or a bath when his mediport is accessed).

Medically, things were quite good (well, but for the blood counts). Chris continues to hang on to that tooth. He is a bit upset as he knows that he often tires easily during and after chemo (when else is there?). He hopes that he get past that when he is a teenager. We do too.

Joke of the day -- (getting in the spirit) -- What would you get if you crossed a skunk with a type of Easter candy? Smelly beans.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, March 21, 2004 9:29 PM CST

Hi Everybuddy!

It was pretty cool day for Chris; he started it by sleeping in until about 9:30 a.m. That was when Mom and Genie went in to awaken him. Genie just plopped at his feet and wait for Mom to do the actual work part of waking him up. Mom did that by taking Chris' hand and using it to tickle his own ear. He tried hard not to smile, but eventually he burst out giggling. They made it to church in good order.

After church, Chris and Mom stopped off to get Chris some chicken McNuggets and Dad a salad, breaking with their usual pizza fellowship. Time was of the essence though since we were to link up with Les and his family at the airport to say farewell to their daughter as she returns back to school after her spring break. Chris and Marlise caught up as if they had only last talked a couple of days ago, speaking about things like chess. They don't get together very often, but when they do, they get along like old friends. Of course, Les and Chris got into a discussion about their next competition: chess. Les is a self proclaimed master, while Chris is the self proclaimed person destined to take him down. No doubt, it will be an interesting set of games for sure. Although Les noticed that Chris strength was better (they wrestled), Chris visibly tired by the end of the visit.

Nonetheless, Chris rested a bit in the car as we headed toward home. On the way, he felt strong enough for us to shop at a new mega store, where there are dry goods and groceries. Ever hopeful, Chris asked to scope out the "kid's section." He just window shopped today though, and Mom and Dad moved on to the grocery shopping. Chris obviously made quite an impression on a couple of members of the checkout staff. We were in a line with a cashier who looked to be a bit grumpy. Chris started talking to her about the smiley face pin that she was wearing. Soon she was wearing a real smile. He then went on to talk yet another cashier and got her going. One of them even said that she wanted to take him home.

Once home, Chris and Mom played another game of chess, after having played one earlier. Chris won the first one (he had celebrated with one of his "happy dances"). Mom however, had him in this game, at least until she sacrificed her last rook, giving Chris a draw (Dad thinks that she threw the game but she's not saying). Chris was adequately humbled but having fun.

Before dinner, Chris went next door to visit with a Chihuahua that our neighbor's daughter owns. She was home from college but was heading back to school today. Chris loves the little dog and said that he might want to get one when he goes off to college, too.

Today was another big spring cleaning day. Chris did a little (with emphasis on "little") work today in his room. He monitored the radio with Dad, who went up on the roof to clean out the gutters. To be fair, Chris cleared out the equivalent of a large black garbage bag of movies and books that he believes he has outgrown; those he'll donate tomorrow. Chris also helped by not making too many new messes.

Medically, Chris had no troubles but for one loose annoying (to his parents anyway) tooth.

Joke of the day -- What would you get if you crossed the Easter Bunny with an over-stressed person? An Easter basket case.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

To those who follow the sun: Happy Vernal Equinox! Welcome Spring!

Love,

Chris, Alison and Pat

Saturday, March 20, 2004 10:00 PM CST

Hi Everybuddy!

Chris spent a quiet day at home largely because his friends were otherwise busy, while the double whammy of spring cleaning and tax return preparation had descended upon our house. He mostly spent the day either helping Dad with the cleaning, cleaning some his own area or helping to hang shelves in the music room closet. He and Dad periodically stopped and played keep away with Genie. It was such a beautiful day, and she (ok the rest of us, too) wanted to be out all day long.

Chris and Mom both spoke with Uncle Brian, who called in again from Kuwait. He continues waiting to get home, but it will take some time. Once his brigade gets their equipment cleaned, he should have a little more time to himself. He did say that he is enjoying the dessert bar that they have in the dining facility -- after not having access to one for a year. He sounded good and rested, even though the telephone connection was less than desirable.

Chris received a special delivery today: a package from an "Avenging Chess Player." Chris' message to her: "I accept the mission." He received several books that help coach kids on how to play chess. Dad took notice of the one entitled, "How to Beat Your Dad at Chess."

Later, Chris and Mom went off for dinner, then met a couple of friends at a special prayer meeting. The prayer meeting took a little over two hours, but it was informal so Chris and the other children were able to play in the back for most of the time when hands were not being laid on him.

Medically, there was not a lick of trouble. Chris tooth continues to defy gravity. Aunt Jackie might want to check the Tooth Fairy rules to see if a certain period of time is required to pass between her visits. Perhaps that's what's causing the hold up.

Joke of the day -- (getting in the spirit a little early) -- Why was the Easter Bunny so upset? He was having a bad hare day.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, March 19, 2004 9:50 PM CST

Hi Everybuddy!

Chris didn't do too badly on making it to his class parties today: he attended the school's Accelerated Reading (AR) party but missed out on his own classroom party. Genie remains enthusiastic about going in to wake up Chris but seems to be less interested in hanging around there if he doesn't get right up. Chris' first order of business was an early stop at the Tampa Clinic. He needed a blood test before the weekend, yet he was desperately trying to make it to his school parties. Chris just had to contend with a finger poke. His blood test results were: white blood cells dropped to 2.7 (normal: 4.0 - 12.0), hemoglobin remained at 10.0 (normal: 11.5 - 14.5), platelets dropped to 22 (normal: 150 - 450), while ANC dropped to 1100 (normal: 1400 - 7400). The numbers make it clear that Chris had stopped his G-CSF shots. He was also told to expect to start chemotherapy again on Monday, this time with Temodar. The nurses eagerly awaited Chris' "tooth report" and were surprised that Chris' tooth was still hanging in there. It is still very "wiggly." With platelets of 22, the doctor wasn't comfortable with him entering the weekend with such a low number, she had him come back at 1 p.m. (the same time as his classroom's Spring Party). Chris said that there is just something about his luck, medicine, and parties.

The guys headed right for school after the first clinic visit in the hopes of attending the AR party. They were in luck and showed up just a little after it started. It seemed that most students at his school had met their reading goals. Even before the guys could see the kids, they heard them. It was as loud as a Super Bowl game. A very funny comedian was entertaining the students; he eventually had the principal doing the hula-hoop thing and the PE coach juggling bowling pins. The kids loved it. Chris overheard one teacher (who has been teaching at this school for over twenty years) say to another teacher that this was the best AR party that she's ever seen. She is apparently responsible for the fourth quarter AR party and didn't know what she could do to top this one. Chris felt the same way about the party as the other nine hundred students. Dad had to pick him up just before lunch.

The second clinic visit went very well. Chris and one girl were the only patients there. The little girl (age 4) just loves Chris. Today he gave her a happy face pin for her ever-present hat (she was feeling a little glum), which always has different dried flowers pinned to it. The pin perked her right up. The guys stopped on the way home for some grass seed (it's that time of year). Chris was surprised that there were so many different types of grass seed.

Once home, Chris, Genie, and Dad played keep-away games that went on for so long that Genie had to take a few water breaks. She's awesome and it's hard to get a toy past her. Chris also helped out (albeit just a little) on the spring cleaning effort that started yesterday. We're doing a major reorganization. Chris helped shuttle things from room to room.

Both Dad and Chris got a reprieve when Uncle Brian called from Kuwait. Chris mostly just listened. Uncle Brian is getting some sleep and is finally free from having to wear a helmet, flak vest, protective mask, load bearing equipment and from having to carry a rifle around everywhere all of the time. Dad knows what an amazingly good feeling that is. His unit is somewhere in the queue to catch a flight home, but the focus now is cleaning everything so that they can pass US Customs inspection when they do return to the US. Customs officials are very picky, as they should be.

Medically, things were quite good (well, but for the blood counts). Chris continues to hang on to that tooth.

Joke of the day -- (getting in the spirit) -- Where did the Easter Bunny go to college? Johns Hop-kins.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, March 18, 2004 9:50 PM CST

Hi Everybuddy!

Chris' schedule is getting pretty close to downright normal; today he went to and returned from school on time with everyone else. The most notable thing he had to say about school today was that the macaroni and tomato sauce lunch was "tolerable." This week seems to be a slow week, allowing the students recover from the standardized testing (FCATs) and in anticipation of next week's spring break.

A neat thing about today was that after school, he and Dad went over to the media center to do some coordination about the volunteer program. Lo and behold, the chess club was meeting. Chris had watched a meeting a few weeks ago, and this time the chess coach (and a PE teacher) invited him to play. Today they were playing team chess; Chris was teamed with a very bright girl. It seemed to Dad to be a pretty cut-throat bunch. Dad was asked to fill in for a kid who had to go to the office for a bit. When he sat down with his new teammate, Dad's opponent asked him if he was ready to die. Dad didn't think so and didn't and when the original player got back; he was set to win in two moves, which he saw and did. It was a rough crowd though. Despite that, Chris' team won three out of four games; Chris accounted for two of those wins, which was not too bad for a first outing.

After the chess club meeting, Chris asked to stop off at McDonalds, so the guys did so before going home to pick up some things that we're providing for tomorrow's Spring Party at school. Hopefully, Chris will be back from the clinic to be able to attend it. We then took them over to the homeroom mother's home since the required refrigeration and tomorrow's timing (regarding Chris' medical appointment) is unsure at best. Once done, we headed for home, where Chris spent some time reading before heading off to watch the Tampa Lightning hockey team play a game against Buffalo. One of the players routinely obtains box tickets available to the children with cancer. Chris was hoping that his friends Christina and Ashley might be there, but they weren't. Chris watched the hockey for a while, but then he and a few other boys played a video game that had been prepositioned for the youngsters. The game was exciting but troubled by senseless fighting on the ice, which is rare for the Lightning. It was a very exciting game, but Chris grew tired. His eyes were bloodshot, so we left after the second period with a score of 1 to 1. Dad and Chris listened to the third on the radio: Tampa came back and added two more points for the win. When we got home, Chris was asleep in the car and had to be roused in order to come in to take his night time pills and get cleaned up for bed. He was a tired puppy and his eyes were even redder. He'll probably be asleep just as soon as his head touches the pillow.

Medically, Chris didn't have any medical trouble. Chris' tooth is still being defiant; it wobbles considerably fore and aft but has little lateral movement. He doesn't want to try and take it out yet.

Joke of the day -- Science teacher: Can you tell me one substance that conducts electricity, Jane? Jane: Why er...... Science teacher: Wire is correct.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, March 17, 2004 9:15 PM CST

Hi Everybuddy!

Chris had another fairly normal half day at school today, due to the end of the 3rd quarter. That being the case, Dad held off on going to the clinic until after school. This morning, Genie had to "ad-lib" at Chris' wake up time because someone had moved both of her rope-toys out of her reach. Her solution: just to lay on Chris' legs.

Chris didn't mind only having to go to school for a half day. Later he reported that he attended music class and was able to read. He and his classmates were even fed an early lunch before being released early. Since they had about an hour and a half to kill before they could go to the clinic, the guys went to Mel's Hot Dogs. Chris told Dad that the dogs there are just as good as ever. The guys also had to smile as they overheard a woman at the next table marveling at a picture of a Mel's Hot Dog bumper sticker being held by a soldier in Baghdad, Yup, she was talking about Uncle Brian. They also had some time to do a little shopping before heading to the clinic.

The clinic visit went quickly and well; Chris just had to contend with a finger poke. His blood test results were: white blood cells rose to 9.2 (normal: 4.0 - 12.0), hemoglobin rose to 10.0 (normal: 11.5 - 14.5), platelets dropped to 41 (normal: 150 - 450), while ANC rose to 6100 (normal: 1400 - 7400). Chris was told to stop getting the G-CSF shots (yeah!). While at the clinic, Chris dropped off a bunch of neat kid trinkets that he had won at his school's festival. They will go in the clinic's "treasure chest" (which provides a bit of motivation for the young patients to cooperate with their medical procedures). One of the big questions at the clinic was whether Chris' tooth was still hanging in there. It is, but it is very "wiggly."

Once home, Genie, Chris, and Dad played a marathon session of keep-away this evening, during which Genie revealed a tremendous new play of jumping for the tennis ball and snagging it as it crosses over her shoulder. She even managed to land on her feet. Both Chris and Dad were very impressed.

After Mom got home, Chris and Dad dragged her off to see something that they had found while shopping. Chris found a new toy, and put his St. Patrick's Day gifts to good use (thanks Grannylin, Granddad and "Aunt" Cathy). Since it was too late to cook, we stopped at a quaint looking local "mom-and-pop" style pizza place. Although it wasn't much to look at, we enjoyed our meals. Chris proclaimed it a new official Becker family hangout -- not a bad find for the evening.

Medically, Chris didn't have any trouble that he mentioned with stomach cramps or at least he never asked for any medications. Chris is insisting on hanging on to that old snaggletooth tooth, which seems to be hanging only by a thread. He looks sort of like a barracuda.

Joke of the day -- Did you hear about the kid who sat up all night wondering where the sun had gone? The next morning it dawned on him.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Here's hoping that you all enjoyed a Happy St. Patrick's Day!

Love,

Chris, Alison and Pat

Tuesday, March 16, 2004 8:44 PM CST

Hi Everybuddy!

Chris had as about a normal day as a kid can have, even on a "Terrible Tuesday." Genie tried a new stunt today to awaken Chris: acting as "Ball Girl," she brought a tennis ball into Chris' room and dropped it on his stomach. That didn't work, but her interesting her in a game of "fetch" got him going. After a bowl of cereal for breakfast, the guys headed off to school for a "Pony Express" drop off (just like a hundred other kids). He spent the full day at school and didn't even need any medicines. When Dad went to pick up Chris this afternoon, he was dancing around on the covered walk with his teacher watching nearby. She told Dad that she loved it when he did his "Happy Dance." We do, too.

After school and a quick stop for a snack, the guys headed home so that Chris could do his homework; it needed to get done right away because today was "Terrible Tuesday." Chris is re-reading the "A Series of Unfortunate Events" books, now that he's read the "Unofficial Autobiography of Lemony Snicket (the author) because he's looking for previously unseen clues. Today, he finished the second book, again. Genie accompanied the guys to drop Chris off at religious education class (she also went to school at the end of the day to "retrieve" Chris). Chris linked up with Greg. They had a good time at "God school," but did not provide any details to parents.

The guys then stopped off at McDonalds, where Chris got his chicken and Dad enjoyed a nice salad. They were kind of slow and almost gave the guys the wrong order, after which Chris commented that it happens too often (to be fair though, this was not Chris' usual McDonalds).

Tonight at the Cub Scout den meeting, the boys reviewed their knot tying lessons and learned how to pitch two types of tents. We also discovered the hard way that the mosquitoes are back in season; it was almost like "real camping," even though we were on schoolyard grounds. The boys liked tonight's activities because they were constantly doing things.

Medically, Chris was still troubled by a few bouts of mild stomach cramps. Chris is still working on his loose tooth and gradually trying to encourage it to come out. He doesn't want to pull it or try anything "tricky."

Joke of the day -- What did the metric alien say? Take me to your liter.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, March 15, 2004 9:15 PM CST

Hi Everybuddy!

Chris was slow to awaken this morning, but he made it through the morning without any side effects problems. He was supposed to start another cycle of chemo today using Temodar, but his blood counts were uncooperative. His blood test results were: white blood cells rose to 4.5 (normal: 4.0 - 12.0), hemoglobin dropped to 9.9 (normal: 11.5 - 14.5), platelets dropped to 7 (normal: 150 - 450), while ANC rose to 2600 (normal: 1400 - 7400). Chris was cleared to return to school but was told that he needed to come back to the clinic for a platelet transfusion sometime after school. Surprisingly, none of the usual tell-tell indications that Chris needed platelets were evident this time. Despite the increase in ANC, Chris must continue the G-CSF shots at least through Wednesday. Dad learned that Chris' EKG and his Echocardiogram (heart tests) results were both blessedly normal. After all of these years of chemo (including drugs known to sometimes cause heart problems), we can only be grateful for the strength of his heart.

While at the clinic, Chris dropped off a nomination for one of his nurses to be considered "Employee of the Month." We hope it works. Chris also was able to visit with his friend Christina again; the two goofed off a bit. Somehow Christina managed to put an inflated surgical glove on her head and she looked a bit like a punker rooster. Chris also cheered up one little boy by getting him to talk about Pokemon (something that Chris has thankfully outgrown). After he was released this morning, the guys headed for school. On the way into school, Chris dropped off about five pounds of candy at the church next to the school, where the minister frequently gives the kids heading home after school a piece of candy or a grape. Although Chris has anonymously done this in the past, today an office staff member dragged Chris back to the minister's office. Chris said that he got to slip away while he was on the phone. Ha!

Chris missed reading in the morning but somehow made up for it later. His class also had PE and watched a movie about the heart during science class, which totally grossed Chris out. Despite his extensive hospital "training," Chris still doesn't do hospital scenes or blood well. He was also at school in time to eat lunch with his classmates. Today's feature was a chicken filet sandwich, which Chris liked but he's never ordered one in Mom or Dad's presence.

After school, the guys headed right back to the clinic for the transfusion. Once there, someone from the Children's Cancer Center offered Chris tickets to watch the Tampa Lightning play hickey on Thursday, which he accepted. The team is very good about these sick kids; one player in particular often makes box seating and dinner available for these children. Because of the box, immuno-suppressed children can watch the game and feel "normal." This season the Lightning are doing rather well; it will again be a thrill to watch them play. The hostess for that night from the Children's Cancer Center is one of his favorite people who comes to the clinic (and other places) to hang out with the kids (Chris persuaded her to read, "The Hobbit").

Today's transfusion went well, and Chris was into all sorts of mischief with one of the nurses. Today they even played office chair bumper cars. All of the nurses had suggestions (some of which were bizarre) as to how Chris could rid himself of his loose tooth. Chris laughed, realizing that they were all kidding. Dad also laughed but reminded Chris that we're waiting for nature to take its course for this tooth. After the clinic visit, Chris and Dad stopped by Toys R US, where Chris finally decided to spend some of his savings on a backpack water camel (it has a water bottle in the backpack and a straw leading over the shoulder so that he can drink from it while walking). It is a partner to the Wild Planet canteen that he recently "tested" for the company. The guys then went home and played with the dog. Genie, Chris, Mom and Dad had a marathon session of keep-away this evening, using two tennis balls. That made for a very wild game; Genie really had a good time.

Chris also did a little "happy dance" (not quite up to par with the River Dancers) when Dad told him that Uncle Brian's convoy made it safely to their destination in Kuwait. We expect that he'll be heading home for good in a few happy weeks. We trust that he'll get a good night's sleep once again.

Medically, Chris was still troubled by a few bouts of stomach cramps. Chris is still intrigued by his loose tooth but he was cool to any of the ideas as to how to remove it that the nurses suggested.

Joke of the day -- (complements of Uncle Tom and Cousin Jane) -- The first restaurant on the moon isn't doing very well. It's got great food, but no atmosphere.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, March 14, 2004 9:07 PM CST

Hi Everybuddy!

It was another happening day for Chris, during which he had to walk around wearing a surgical mask for much of it. We're pretty sure that three days of G-CSF is helping rebuild his weakened immune system's ability to protect him, but we can't be sure, at least not until after a blood test. It took Dad and Genie a bit to get Chris up and going this morning, but the threat of "tickle torture" finally got him to admit that further attempts to sleep later wouldn't succeed. Chris attended church but had to wear a mask. He was not happy about that, but he grudgingly complied. (Interestingly though, it didn't seem to bother him a bit to wear the mask yesterday at his school's festival, where he was seen by classmates.) At Chris' request, pizza was brought home for lunch. We sure hope that all that tomato sauce is strengthening his immune system. He ate fairly well throughout the day today.

Not long after lunch, it was time for us to leave for the dedication of Tampa's new Cancer Survivor Plaza. The plaza was made possible by the contributions of several corporations and the Bloch family (founders of H and R Block). Mr. Bloch once had a serious run-in with cancer and has decided to help establish more than twenty of these plazas in various cities throughout the US. The weather was beautiful for the dedication. Chris found his friends Christina and Ashley there as well. Both of our families walked over to an exhibit where artwork, letters (and in Chris' case, music lyrics) submitted by pediatric cancer survivors are displayed (new submissions will be rotated through the exhibit as time goes on). Chris had submitted some artwork (a picture he had drawn for last year's Christmas postcard for Corporate Angels Network) and song lyrics. They were not displayed today (they could be viewed in the future), but we were happy to see that one of Christina's masterpieces was selected for display at the dedication. We saw some other people from the hospital and clinic, in particular the child life therapist from the Tampa Clinic. This new plaza is part of one of the city's parks and is beautifully wooded and landscaped. It has been designed to be a place of respite, where especially a newly diagnosed person can go for rest and to gain insights as to how to fight cancer. There are bronze signs with empowering ideas scattered throughout the plaza; the basic message is that there is always hope.

After the dedication, we headed to a nearby bookstore to obtain the "unofficial" autobiography of the author of "A Series of Unfortunate Events" books. Chris is hoping that he'll gain some insight into solving the mystery that has been interwoven into all of the books in this series. He also bought a toy called a "neo-pet." It is like a sort of electronic pet (yeah, like an electric pet rock). After a short stop for some essential groceries, we finally went home. It was such a beautiful day that going into the house didn't seem like such a good idea. But, as the adage goes, all good things must come to an end. Most of the night was spent making dinner, watching a Jimmy Neutron movie, and "dog-piling."

Chris was quite pleased today to have found an e-mail from Kathleen, the college student who was his family buddy at Boggy Creek Camp a few weekends ago. He wrote her back and told her that he really hopes to see her again at Boggy Creek during the summer. She is a member of the "Friends for Life" organization, which focuses on providing emotional support to children with cancer. Kathleen, like so many people whom we've encountered throughout the almost five years that Chris has battled cancer, has made his fight just a little easier to bear.

Medically, Chris had few troubles today and spent most of the dancing around as he does. While at the bookstore, he felt the tingling sensation that he calls "itchy fingers." Benedryl was able to handle that though. Chris was masked for most of his activities out in public today. He is still getting G-CSF shots. As the evening wore on, the stomach cramps returned, but they were not as severe as they have been. Once again, Benedryl came to the rescue.

Joke of the day -- (complements of Uncle Tom and Cousin Jane) -- What is brown and lives in a bell tower? The lunch bag of Notre Dame.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, March 13, 2004 9:37 PM CST

Hi Everybuddy!

It was a weird and busy day. We let Chris sleep late until midmorning since he didn't have anything scheduled until his school's festival began. Even when Dad went in to wake him up and put Emla cream on his leg (in order to numb it before the G-CSF shot) after almost twelve hours of sleep, Chris was still very sleepy. Gene of course contributed to awakening him successfully though.

After breakfast, it was late and nearly time to register his car, "Golden Retriever" in the local Cub Scout district's pinewood derby competition. Chris' car had qualified for this level in his pack's races a couple of week ago. We went to the appointed location and time, but found no one there. We then returned home and did a quick computer search for information, and luckily discovered that we had inadvertently received the name of the wrong sponsoring church. The actual site was only about a mile away from the first site. We then headed out again and this time successfully got Chris' car registered for the competition. Since Chris was not medically authorized to go into the crowded indoor race area because of his low blood counts, he received permission for his car to be raced "in absentia" (the boys are supposed to be present and in uniform for the race).

As it was then getting fairly late, we returned home, where we split into two different cars and drove over to Chris' school for the festival. Dad stayed only long enough to check it out (it was quite nice) and have lunch with Chris, who generally remained outside and always wore his surgical mask. Dad soon left so that he could represent Chris at the pinewood derby race, while Chris and Mom stayed at the festival. Chris had a good time going through all the booth competitions, where he won a fair number of trinkets. His favorites though were the used "choose your own adventure" books that he won at the "book walk" event. It's similar to the game of Musical Chairs. Once the music stops, the kids have to sit down on seats that are numbered. A volunteer picks a number out of a hat, and the winner is allowed to pick one book from a large pile of new and used childrens books. Chris really enjoys the "choose your own adventure" books (each such book offers several different outcomes based on the reader's selections), which are now apparently out of print. He also got Mom some earrings and a ring (which has already turned her finger a little green but they did look pretty nice for 50 cent jewelry). While at the festival, he also climbed inside a very long limousine which was parked there (the festival included an auction for the chance to ride in the limo). Although he enjoyed the creature comforts inside, he decided that limos weren't his thing (he's been a little nauseous recently due to chemo effects).

Just as Chris and Mom were leaving the festival, Dad called them with the race results. "Golden Retriever" had come in thirty place out of forty entrants. The car had developed some problems on its right side (as if it had been leaned on a bit) sometime this morning. Chris was just happy to be able to finally be able to race it. It is a nice looking car and is already in a glass display box that he bought for it last week.

We all linked up at home finally, where Chris and Mom spent some time playing as a team in a video game against the computer. Mom, who never actually plays these games, actually won a couple of mini-game events, too. After a break, we headed out for our usual weekend shopping adventure; we got home without incident but for Chris' need to make an immediate run for the bathroom. He still isn't past the diarrhea stage, although he had a very good day today. We hope that tomorrow he'll be closer to back to normal.

Medically, Chris had a little trouble at the end of the day with diarrhea and some stomach cramps. He took a dose each of Imodium and Benedryl just before going to bed. Chris used his real toothbrush tonight. His loose tooth is still hanging in there.

Joke of the day -- (complements of Uncle Tom and Cousin Jane) -- What do you get when you cross a centipede with a parrot? A walkie talkie.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, March 12, 2004 9:35 PM CST

Hi Everybuddy!

Chemotherapy has caught up with Chris again and put a crimp on what was to be a really cool weekend. Most of Chris' blood counts were tolerable, but his ANC was poor enough to trigger the need to start the G-CSF shots again and to preclude him from going to school today. The blood test results were: white blood cells dropped to 1.5 (normal: 4.0 - 12.0), hemoglobin dropped to 10.1 (normal: 11.5 - 14.5), platelets dropped to 45 (normal: 150 - 450), while ANC dropped to 300 (normal: 1400 - 7400). The ANC needs to be at or above 500 in order to be in school. When Chris asked if he could still go to the premiere of a new movie, "Cody Banks 2," she said it was possible only if the theater was deserted (although she was cool to the idea).

The doctor was very concerned about Chris going to the Pinewood Derby competition on Saturday since it is likely to be attended by a few hundred Cub Scouts, their siblings and their parents, all crowded into a large indoor room like a gym. Chris won't be able to go this year, but Dad intends to go for him). The doctor thinks that Chris could probably go to his school's festival as long as he stayed outdoors (that is doable). He should also be able to attend to Sunday's cancer survivor memorial park dedication. Chris was disappointed with today's medical news, except for the part about not having to go to school. Ha! He said that he would really rather just go to school than miss out on everything else. The doctor also told Dad that Chris didn't need any antibiotics in advance of his loose tooth (yes, there's another loose tooth, this time it seems to be a normal loose tooth) coming out. It seems strange, but if a dentist has to do dental work, Chris has to take an abbreviated course of antibiotics, but that's not required if it comes out on its own. Go figure.

Chris asked the doctor if there were any better drugs than Imodium AT for his stomach cramps and diarrhea. She discussed a medicine that's given as a shot, and some morphine kind of thing. Chris didn't care for those options, but then he suggested Benedryl. She thought that it might have merit, so that's what he's going to get for the next few cramping incidents. Dr. Chris to the rescue . . .. His oncologist also told Chris that there was a good possibility that she could be the camp doctor for his session at summer camp. He and Dad immediately started talking about pranks to be pulled. She told Chris to think about it as she has her own big bag full of pranks. He loves a challenge.

After Chris' G-CSF shot and a few hours wait, Chris and Dad sneaked over to a movie theater and watch the new movie. Chris loved it, although like many kids movies, some of it was highly implausible. That didn't stop it from being cool though. Both Dad and Chris were happy that there were only eight other people in the whole theater; Dad said that they could stay for the film. It was a good kid movie. After the movie, the guys went right home and played with the dog. Genie has had quite a day with Chris around to play a few times during the day, getting to run around with the neighbors' young dog, then playing with Chris, Mom and Dad in a marathon session of keep-away this evening.

One of the many things that Chris does is being a toy tester for Wild Planet Toys (thanks Barbara). Occasionally he receives a new toy to analyze along with a questionnaire to answer. Today he received a very cool canteen: it's a one quart canteen with an integrated plate that can double as a Frisbee, illuminated spoon and fork, and food container. He was very impressed and has already filled out his analysis. He hopes that it will be available to all kids soon.

Medically, Chris was still troubled by diarrhea but the stomach cramps and nausea are beginning to decrease. For example, he asked for Benedryl close to bedtime, but he was distracted by a story that he was telling Mom. He apparently forgot that his stomach was bothering him, and since he obviously felt better, Mom did not remind him about the Benedryl. He fell asleep without needing the medicine. Chris had no dental related problems but is intrigued by his loose tooth. He thinks it will be there for a while but Dad thinks that it will be out by Sunday on its own. Chris is still cleaning the area of the tooth extraction using a spongette and some "swish and spit" prescription mouthwash and will start regular brushing tomorrow.

Joke of the day -- (complements of Uncle Tom and Cousin Jane and one of Chris' favorites [once he figured it out]) -- Why do fire departments have Dalmatians? So they can find the hydrants.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, March 11, 2004 9:04 PM CST

Hi Everybuddy!

It was such a normal day for Chris that he said that it was almost boring. Genie did a great job getting him going this morning. Chris even ate most of his waffle. He not only went to school at the same time as everyone else, but he also spent the whole day there. The school nurse didn't even have to call home because he didn't require any additional medicines. When Dad picked him up after school though, Chris was tired and hungry though. He was very happy though; he learned that he had qualified for this grading period's AR (advanced reading) party by reading some books which were very high in points due to being more difficult than the usual 4th grade material (this morning Chris thought that he'd have to read two more books in order to qualify for the party invitation). Chris and Dad went to the media center to link up with the computer guy who writing the software for the student volunteer program, and he was late. Chris was so tired that he ended up falling asleep while waiting. After everyone linked up, they all went by way of McDonalds to get Chris a "dunch" before heading over to the university for the software development meeting.

Chris attended that meeting, which he thought was a real snoozer (OK, he was almost right, but it was necessary). He ended up playing a video game and reading the book "Johnny Tremaine." Chris didn't mind too much since our friend Les was hosting it, and he got to speak with some of the people who work with Les and have been "Chris supporters" for years. He gave one lady who also liked happy faces one of his happy face pins. She's been a supporter of both Chris and the Ronald McDonald House for quite a while.

After the meeting, the guys headed back to Chris' school, where they dropped off the computer guy before Dad and Chris went over to the cafeteria. There, they helped the school's "Dads Club" set up booths for the school's festival "Mana-fest," which is scheduled for this Saturday. The booth construction instructions were virtually nonexistent and there was quite a lot to do and only a few people to do it. Chris learned that he could help considerable by helping to hold the booth poles upright while the adults fitted them together. He was really was a big help and more than a few dads went over to thank him. Mom got home for work this evening and learned that Chris was still over at the school where Dad was still helping the other dads. So she came and rescued Chris. (Dad still had a little more work to do there.)

When Chris got home, he found mail addressed to him. One was a package from "Grandpa Joe." Chris now has his very own personalized "Snag and Me" T-shirt. "Snag and Me" is a delightful series of books about a fun but slower paced era in not-that-distant-past that Chris enjoyed reading, which were written by none other than "Grandpa Joe." Chris just had to put on the shirt right away; its green color made Chris' green eyes look really cool. Chris also received some McDonalds money from another long time supporter and old friend of Dad's. Chris thought that it was very touching and right on the money since he's spent so much time recently at McDonalds (however did she know?).

Medically, nausea and diarrhea are still factors in his life. These symptoms appear to be somewhat less severe than after the last chemo cycle so it is possible that the antibiotic Vantin may have made a difference. Chris' stomach cramps seem to be worse in the morning and just before bed. He had no dental related problems.

Joke of the day -- (complements of Uncle Tom and Cousin Jane) -- Where do young cows eat their lunch at school? In the calf-eteria. (In fairness to Cousin Jane, we're pretty sure that Uncle Tom comes up with these jokes on his own, but they come in an e-mail with her name, too, so . . .).

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, March 10, 2004 10:02 PM CST

Hi Everybuddy!

Chris found an unusual surprise this morning. The Tooth Fairy had come at some point before Chris awoke and had left him some money in exchange for having taken his tooth. That's not so unusual. What made it a little different this time was that Chris had not put the tooth under his pillow. This time, he wanted to try saving the tooth for an experiment for today -- he wanted to see if he could tie a string around it and turn it into a necklace, sort of like those shark's tooth necklaces. Mom had told him last night that he could not do that unless the tooth had been "sterilized." Chris wasted no time in placing it in a Dixie cup, then filling it with hand sanitizer for an overnight soaking. The Tooth Fairy found the tooth in the bathroom, then removed it from the cup, and placed the money under the cup. Chris found it when he went into the bathroom this morning as he was getting up and ready for school. Mom hopes for the Tooth Fairy's sake that Chris doesn't try to hide any future teeth from her in unusual locations; she has it on good authority that the Tooth Fairy isn't terribly alert when she comes calling in the middle of the night.

Other than that, it was almost a "normal kid" day for Chris, at least for the first part of the day. He actually was able to attend a full day of school and didn't need any additional medications while in school. He also finished his standardized testing (FCAT) make-up exam. Today's component (the last one) was another reading comprehension test, which he enjoyed. Chris even managed to eat lunch and not have any trouble afterwards. His big "report" of the day was telling Dad about some girls having been sent to the principal's office from the kickball field. One of the girls was a good friend of Chris' and has always been well-behaved. Dad explained that sometimes the excitement of a sporting event can affect people and they behave differently from their usual manner. Sometimes seeing the uglier side of sports allows one to better appreciate the importance of good sportsmanship.

Genie spent the whole night again in Chris' room without keeping him awake. Mom and Dad think that maybe Genie is trying to make a special effort to comfort Chris; she usually cruises around the house at night until she falls asleep. She normally wakes Dad up at around 6:00 a.m. This morning, Genie was waiting patiently for Dad on Chris' bed (he was sound asleep at the time). Genie performed her role as "Rope Girl" when it was time to wake up Chris. She managed to drop her rope right on his belly (which may not have been such a good idea if it had happened later in the day).

After school, Chris had to go to a clinic appointment. He was merciless with the nurses, who gave it right back to him. He and one nurse even tried to do some juggling
(he's trying to learn how to juggle -- she wasn't half bad either). He got a regular blood test, the results of which were: white blood cells dropped to 1.9 (normal: 4.0 - 12.0), hemoglobin rose a bit to 10.5 (normal: 11.5 - 14.5), platelets were 76 due to yesterday's transfusion (normal: 150 - 450), while ANC dropped to 600 normal: 1400 - 7400). We suspect that Chris might have to start his G-CSF shots again on Friday. Meanwhile, Mom got some clarification from the dentist. She removed the tooth that she had intended. As it turned out, the two bottom molars that we thought needed to be removed had already been treated with fillings in the past. They do not appear to be a current problem, even though they have dark spots (which apparently is the filling itself). What with all of Chris' extensive treatment, Mom thinks she must have just lost track of what has happened inside Chris' mouth. The bottom line is that Chris did not complain of pain or sensitivity in his mouth today, so perhaps whatever he felt this weekend was extending from the tooth removed yesterday.

We also learned that Tampa's new cancer survivor's park will be dedicated this Sunday. If all went like it should have, Chris should have some artwork and some songs on permanent display there. For all you who are from the local area, this park is part of the Al Lopez Park, located at the corner of Dale Mabry and Martin Luther King. There is also going to be a cancer kid carnival on the other side of town about the same time as the dedication. If that wasn't enough to do this weekend, we found out that Chris' third place finish qualifies him for the district level competition, which is scheduled for this Saturday at about the same time as his school's annual festival: Manafest.

After today's clinic visit, Chris was very hungry, so we went to a place where he could have a personal pizza and do a shopping chore. Dad got Chris a book in celebration of completing the FCAT exam the hard way. He has had a rough couple of weeks, for sure. The guys then went home and waited for Mom; we had to go retrieve her car from the shop.

Medically, nausea and diarrhea were still issues today. Chris had stomach problems throughout dinner and into the evening. In fact, since Mom arrived home after work until the time that Chris was finally in bed at about 9:15 p.m., Chris was in the bathroom seven times with diarrhea and stomach cramps. We marvel at how well he handles it all. On a more positive note, he had no dental related problems and has begun eating solid food again. Chris is still cleaning the area of the tooth extraction using a spongette and some "swish and spit" prescription mouthwash.

We want to take a moment to wish Uncle Jonathan a very Happy Birthday!

Joke of the day -- (complements of Uncle Tom and Cousin Jane) -- How do you make a moth ball? Hit it with a fly swatter.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, March 9, 2004 9:34 PM CST

Hi Everybuddy!

Chris didn't spend much time at school today, but he was able to stay around long enough to take the third component of the FCAT standardized testing, amid his medical and dental appointments. That was actually the "sane" part of Chris' day, and he actually said that this part (math) was fun. He said yesterday's FCAT testing (reading) was "interesting," but it concerned opera (like most ten year olds know -- or care -- about opera . . .).

While Chris was at school taking his test, Mom and Dad were making dozens of phone calls, trying to put together a schedule so that Chris could get a platelet transfusion and still be able to make it to today's scheduled dental procedure. Nobody was in favor of proceeding with a dental extraction when Chris' platelet level was so low (26). We want to express our gratitude to the nurses at both the Tampa and St. Petersburg clinics, the hospital's patient preregistration department, Chris' insurance complex case manager, the hospital administrators, and the dental team, all of whom made scheduling adjustments and coordination in order to make sure that Chris got the platelet transfusion before the dental procedure. Making this happen is a lot more complicated than most people probably realize. There are other patients who have scheduled appointments, in addition to other medical emergencies that need attention. Insurance authorizations need to be made and communicated to all interested parties before the platelets can be ordered from blood lab, which needs a minimum of 2 hours advanced warning so it can "spin down" the platelets so that they're safe (i.e., platelets only, without other types of blood cells mixed in) and useable by Chris. Travel time needed to be factored in so that Chris could get from school to the St. Petersburg clinic, then back to Tampa for his dental appointment at 2 p.m. (which had been pushed back an hour). There were very few slack minutes in this schedule, but things fell into place today -- even the traffic lights cooperated.

After Dad picked up Chris from school, they stopped for some chicken McNuggets (they didn't know when Chris would be able to eat real food again). They then made excellent time driving over to the hospital. Although Mom had telephonically pre-registered Chris, Dad found a delay at hospital admissions. The nurses at the St. Petersburg clinic made up for lost time. They were some of the same nurses that treated Chris on the oncology ward, so it was like visiting with long lost relatives. While receiving the platelets, Chris also took his antibiotics in advance of the upcoming dental procedure,

Once free of the clinic, Dad asked Mom to call the dentist and let that office know that the guys were en route (traffic returning from St. Petersburg to Tampa can sometimes get stiff due to road construction). Surprisingly, everything flowed nicely and even the traffic lights were kind to the guys, who arrived at the dental office with ten minutes to spare (making it a memorable trip). The dental procedure went quite well and Chris even got to "catch butterflies" (that's what he "sees" after anesthesia). It was only later in the afternoon, when Chris showed Dad his tooth (the dentist returns the tooth so that the Tooth Fairy can have a fair chance to add it to her collection) that he learned that something was amiss. Both Mom and Dad thought that the dentist was going to remove both of Chris' lower "12 year" molars, which have visible cavities. However, she only removed one tooth from the upper left side of his mouth. We didn't know about that particular tooth, although it clearly had a big cavity. Needless to say, we were a little disappointed and confused, but Mom will call the dental office about that tomorrow.

Whatever the outcome of that discussion, Chris did an outstanding job maintaining a good attitude and making people laugh despite all the rushing around and the looming dental procedure (he is not a fan of dentists). Everyone seemed to know what hoops he had to jump through today (we called almost everyone in Tampa to make it happen) and they marveled at his upbeat attitude, even in spite of jumping over all of those hurdles. Despite all the additional medications today (from the transfusion and dental procedure), Chris was up to his usual pranks and wrestling with Genie a few hours after the dentist visit.

During the afternoon, Chris and Dad watched the movie "Twenty-Thousand Leagues Under the Sea." Dad was a little concerned about all that Chris had endured today (in addition to the above, Chris is still dealing with some post-chemo adverse effects, like nausea and diarrhea) and the additional medications he had to take, but Chris came through it all like a champ. As a matter of fact, soon after Mom got home, Chris and Genie had one massive and humorous "dog pile." You always have to be on guard when you are trying to outwit a border collie. She's a smart one, too. For dinner, he suffered through macaroni and cheese (one of his favorites, and he was restricted to a "soft" diet tonight). He won't starve tonight since he had a very good appetite.

Medically, nausea and diarrhea were still issues today. He didn't have any mouth soreness either before or after the dentist visit. We're hoping that the two molars won't cause any trouble later.

Joke of the day -- (complements of certain friends of Chris from Tallahassee) -- Who does a pig call when he's in trouble? Swine-one-one.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, March 8, 2004 9:16 PM CST

Hi Everybuddy!

Chris finally got to spend a full day at school. He started making up parts of the standardized test (FCAT) that he wasn't able to do last week because of his chemotherapy schedule. He was also able to eat his favorite "chicken fries" for lunch (Mom and Dad really are not sure what those are, but Chris loves them). There was a long recess at school, but Chris missed some of it since he needed get some Imodium because of diarrhea. His clinic visit, usually scheduled for first thing in the morning, wasn't held today until after school so that Chris could have an opportunity to make up Part One of his FCAT testing.

Genie did a good job awakening Chris even though he said that he only got four hours to sleep. Some of the trouble was because of "scary dreams," while some was because he tried to sleep on the new couch in the den (although he eventually slept in his own room). Grandma said that Chris was up and in the bathroom dealing with a bout of diarrhea at about 3:30 am, so we know that Chris did not have the best sleep conditions. Grandma and Grandpa didn't leave for their journey home until after Chris left for school. That actually helped with both Chris' and their own departures.

The clinic visit went well this afternoon. Chris brought in brownies that seemed to be just what the nurses needed about that time of day. Unfortunately Chris' blood counts were all over the place. The results were: white blood cells rose to 2.6 (normal: 4.0 - 12.0), hemoglobin dropped to 10.4 (normal: 11.5 - 14.5), platelets dropped to 26 (normal: 150 - 450), while ANC dropped to 1000 normal: 1400 - 7400). What makes this particularly difficult is that Chris is scheduledd for a tooth extraction procedure tomorrow at the dentist's office. The first related issue that Dad needed to resolve was the correct antibiotic to give to Chris in order to safeguard him during the procedure. The unfortunate thing that Dad wasn't on top of his game and forgot to ask about (and the medical team didn't talk amongst themselves about until the late afternoon) was the problem of low platelets. If the extraction becomes difficult, there could be a lot of bleeding. So now we need to get the dentist and the oncologist to talk to each other first thing tomorrow morning. If it is determined that a platelet transfusion is necessary before the dental procedure, then Chris and Dad would probably have to go across to St. Petersburg for the platelet transfusion or cancel the procedure (not a good option because those teeth are beginning to bother Chris). Perhaps they may decide that there may not be a problem. There are lots of "ifs" that need to get worked out first thing in the morning. Chris may also have another make up test for his FCAT tomorrow morning, too. Tomorrow morning will be confusing at best. Mom will work with the dentist office while Dad will work the school and oncology officet tomorrow. We hope that we'll have enough time to make everything happen.

After the clinic visit, Chris needed a "cheer-me-up," so Dad took him to the nearest mall (and he is only a preteen). He bought a strategy guide for one of his games, before the guys headed home and finally linked up with Mom. Since we were all late getting in, we went out to dinner. He didn't eat well but he ate more than we thought that he would. He has already lost one pound, so we will continue to cater to his quirky eating peculiarities for a bit. Chris needed an Imodium for stomach cramps while we were out, and got a Zofran for nausea soon after arriving back home. He was a bit subdued after that and we didn't even have a dog pile tonight.

Medically, nausea and diarrhea were issues today. The Irinotecan seems to tear him up. His mouth soreness (near his teeth, as opposed to chemo-related ulcers) is still an issue, which is why we don't want to hold off on the dental procedure unless we must.

Joke of the day -- (complements of Uncle Tom and Cousin Jane) -- "Dad, can you do my homework for me?" "No, I'm sorry, it just wouldn't be right." "Well, maybe not, but give it a try anyway."

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, March 7, 2004 9:31 PM CST

Hi Everybuddy!

Chris had a pretty nice day. He got cheated out of a Genie the Wonderdog wake up call though since Grandma and Grandpa had Genie outside in the lanai area, enjoying the beautiful spring-like weather. We all got together with Chris though when he tried to eat a waffle. He had tummy trouble this morning but it didn't seem to be quite as bad as it was after the last cycle of Irinotecan. Chris made it to church this morning (and he saw his friend Jonathan a few rows ahead of us), but he spent at least half of the Mass hugging Mom's legs, doubled over with stomach pains. He took a Zofran at the beginning of Mass, and it eventually kicked in, so he stayed for the whole Mass.

After church, Chris used Mom's cell phone to call back home, asking whether anyone was interested in bringing pizza back (obviously, Chris' stomach was back in operation by then). The plan was endorsed by Grandma and Grandpa. Chris was happy to find some freshly baked brownies when he got home, although he turned them down later (and he really likes these brownies). The rest of the early afternoon had Chris into a variety of activities until it was time to go to the cathedral in St. Petersburg, where he was to receive the Cub Scout religious award for Catholic Webelos Scouts: the Parvuli Dei. Chris and Mom had worked for quite a while on the program. As a matter of fact, the church banner that Chris made for one of the requirements is still on display in the church, even after two months (the guys took Grandpa to see it the other day). The Scouts Award Ceremony at the cathedral was very nice; it was dignified (to the extent that you can be with young boys) and much shorter than last year (when it lasted well over 2 hours because it was combined with the Girl Scouts -- this year the Girl Scouts' ceremony happened a couple of hours before that for the Boy Scouts). Today, there were about a hundred Boy and Cub Scouts receiving various awards. Afterwards, one priest noticed Chris' extremely short hair and pale appearance, combined with a short message from Grandma. He prayed over Chris in the parking lot, and said that he was going to add Chris to his parish's prayer list.

After the ceremony, we took Grandma and Grandpa on a driving trip around St. Petersburg to show them Mom's new Reserve center (it's still under construction but almost finished), Chris' hospital area, downtown St. Petersburg, and its surroundings. We then took them to a restaurant that they say they can never get into at home and enjoyed some nice seafood. Chris was a real goof off and has been crazy throughout the day, whenever he felt up to it (his energy alternated with waves of nausea and fatigue, but for the most part he was in good spirits).

At home, we opted for some "Becker brownies" (Chris did not to have any; the timing of dessert just didn't agree with him). Chris did participate in a mock battle; Mom and Chris were "spies" with weapons and all, while Dad was an unarmed, multi-functional "bad guy." Despite being unarmed and attacked by Mom and Chris, Genie the Wonder dog made mock attacks against Dad, defending both Mom and Dad . . . go figure. Obviously, she doesn't side with the underdog (maybe they bribed her with "treats" before the battle?)..

After the "casualties" had been cleared from the "battle area," Chris conned Grandpa into a game of chess. Chris was sort off goofy starting out and was down quite a few points, but then he started some delaying movements that rivaled Chief Joseph. He kept the game going at least ten minutes longer than it was expected to last. Who knows how it would have turned out if he had been serious at the first move. While that was going on, Dad finished a shadow box for Chris' new Parvuli Dei award, which Chris thought looked nice. It is the twin of last year's award.

Medically, nausea and stomach discomfort have been big concerns today, but so far, we have not yet seen the disrupting diarrhea. Chris seems to be doing better than after the last cycle of Irinotecan, so perhaps Chris may repeat the antibiotic (Vantin) before the next cycle in four weeks. He also has a dental appointment on Tuesday, so his dental problems will get some attention. His gums are thankfully still not swollen.

Chris knows that Grandma and Grandpa are heading home tomorrow. After going to bed in his own bed, Chris got up and asked if he could sleep on the new sofa tonight to make sure that he would know when they left tomorrow morning. He tried it, but it all looks different (scary) to him in the dark because the new furniture is still unfamiliar to him, and because he could hear the ticking of the clock in the den. So, Chris went back to bed in his own bed.

Joke of the day -- How did the farmer fix his jeans? With a cabbage patch.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, March 6, 2004 10:16 PM CST

Hi Everybuddy!

Chris had a relatively quiet day and was able to sleep in late. Mom had Army Reserve duty, so she wasn't around to hang around with. Chris had plenty of other people here with whom he could get into trouble.

The first and foremost was Grandma. The two of them "wrestled," talked and joked around. In fact, she learned how strong Chris can be. At one time, Chris, Grandpa and Dad went off shopping, looking for something for Grandma (who stayed home and watched some TV). Dad took Grandpa to several places that may have had the particular item, but it was actually Chris who remembered the one place that actually did have that item. He was happy about that. They also stopped by another store so that he could do some personal shopping.

Once home, Dad made Chris a grilled cheese sandwich; that inspired Grandma and Grandpa to ask for the same. The gang sat around munching on grilled cheese sandwiches -- who'd have thought?

Chris spent a good chunk of the day with Genie: breaking in the new sofa, and hanging out in Mom and Dad's room watching TV. He also showed Grandpa how his new bike worked along with his regular bike and his scooter. On one ride, he went by a neighbor's house, where he sometimes would bring in trash cans from the street on trash day, and asked a worker who was sodding the yard if he needed any help. The guy smiled, but declined Chris' offer.

After a while Mom returned from drill, changed clothes, and we headed for a barbecue restaurant that Grandma and Grandpa now also like.

Chris was tired. He kept falling asleep in the car. He also didn't put up too much resistance to going to bed tonight.

Medically, Chris didn't have any significant problems other than some stomach cramps. Chris' tongue is slowly returning to normal. His 12 year molar teeth on the bottom were still an issue, but the gums are not swollen (yet).

Joke of the day -- A discussion between Grandpa and Chris -- For some reason, they were singing about A, E, I, O, and U. Both sang A,E,I,O,U, but as the tune stopped, Chris said, "Oh, I'm having a vowel movement."

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, March 5, 2004 9:27 PM CST

Hi Everybuddy!

Chris had another pretty good day despite nausea and soreness in his mouth during the evening. As a matter of fact, after returning from dinner, Chris put himself on bed rest. The day started out a bit weird since Dad couldn't find Genie to take out this morning. As it turns out, Chris had apparently lured her into his room sometime last night; this time she snuggled in and stayed there (which is where Dad eventually found her). At the appropriate time, Dad, "Rope Girl" and Grandma and Grandpa went into Chris' room and gave him a hearty awakening. He was quite surprised, too.

Today was Chris' last day of this cycle of chemo (Irinotecan). While at the Tampa clinic, blood was also drawn for a routine blood test. The results were: white blood cells rose to 2.1 (normal: 4.0 - 12.0), hemoglobin rose to 10.9 (normal: 11.5 - 14.5), platelets dropped to 69 (normal: 150 - 450), while ANC rose to 1200 normal: 1400 - 7400). Chris spent most of the time watching the movies, "Dr. Doolittle" and "Lost in Space."

As has oft been the case this cycle, Chris still felt nauseous after leaving the clinic, so Dad gave him a Benedryl to help settle his stomach (he already had taken another anti-nausea drug, but he still needed a little more help). Chris again decided against stopping for a a morning snack or anything, so the guys went right to school. Dad dropped off Chris at the basketball courts, but his gym teacher (who knows about Chris' history) had him sit out shooting hoops; instead the two of them talked while the coach coached.

True to form, the Benedryl kicked in and Chris finally managed a little bit of lunch. When Dad came to pick him up after school, Chris was ok but not very upbeat. Chris made a rare request for two chocolate iced and sprinkles doughnuts; Dad got him two. They then headed home in hopes of being there for the delivery of the new den furniture. They didn't make it but Grandma and Grandpa had handled the delivery. Chris instantly gave "super sofa" an immediate test. Grandma got into the act and proclaimed the recliner as being "very sleepable." It wasn't all fun for Chris; Grandpa had misplaced something important, so Chris and Dad immediately accepted the sleuthing case. As it turns out, after an exhaustive search, Grandpa was the person to find the missing item. Chris enjoyed the challenge nonetheless.

Chris spent the afternoon goofing off with Grandma and Grandpa, playing with Genie, or playing a game on his computer. He also delighted in watching "The Simpsons" with Grandma and Grandpa.

Medically, nausea was again a big consideration for Chris, although it didn't seem to be quite as bad as yesterday. He had some stomach cramps and after dinner, his mouth was sore. It was not the usual post-chemo soreness though. Chris' tongue was bumpy and a little itchy. Upon investigation, Mom discovered that Chris had eaten a few Sweetart candies (he had a fair amount of sweets today, considering that he doesn't usually eat very much candy), and guessed that perhaps that may have irritated his tongue. It seemed to feel better after he brushed his teeth. In addition, and of a little more concern, was the fact that both of his 12 year molar teeth on the bottom were hurting a bit after dinner. The pain was not severe, but bad enough that he did not want to chew anything. He also didn't want to brush his back teeth, until Mom pointed out that not doing so would likely cause more pain tomorrow if those areas get infected. Both of those teeth have obvious cavities, and he is already scheduled for extraction next Tuesday. For the time being, the gums are not red or swollen, but obviously we'll have to keep an eye on those areas and see whether he can make it until Tuesday. Between the mouth pain and especially the nausea, Chris sent himself to bed.

We also recently learned that the little girl we mentioned the other day, Becca, has entered into hospice care. Chris met Becca in New York; the two got along so well that they were put in the same treatment room. Becca is also very smart, a black belt in karate, and loved to dance and sing. Her mother has asked that Becca be remembered in your thoughts and prayers. In more positive news, another of Chris' friends from treatment, Michael, seems to have made quite a comeback. He is older than Chris and a very proficient hockey player. He wasn't doing well until he started treatment in Philadelphia, which apparently has done him a world of good. We are very happy for him -- and his family.

Joke of the day -- Why did Eve want to move to New York? She fell for the Big Apple.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Becca, Michael and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, March 4, 2004 9:10 PM CST

Hi Everybuddy!

Chris had a pretty good day despite nausea and vomiting. Today's clinic visit only involved getting chemo. This cycle, just getting the chemo is making him nauseous; the Zofran isn't controlling it all. His blood test results were pretty good (probably due to yesterday's two transfusions): white blood cells rose to 1.9 (normal: 4.0 - 12.0), hemoglobin rose to 10.4 (normal: 11.5 - 14.5), platelets rose to 89 (normal: 150 - 450), while ANC rose to 1000 normal: 1400 - 7400). While at the clinic, Chris bumped into his friend Christina but the two hardly got to speak. We were sorry to hear that she was admitted to the hospital later in the evening but should be out tomorrow (we hope). Chris spent most of the time watching the movies, "Crocodile Hunter" and "Dr. Doolittle."

After the clinic visit, Chris still felt nauseous, so Dad gave him a Benedryl. Chris didn't even want a morning snack or anything and the guys went right to school. They dropped off Chris' books at his classroom (his teacher was there) and then headed over to the covered sports court, where his classmates were in PE class. Coincidentally, there was a small fifth grade class heading for a bathroom break. Suddenly, Chris covered his mouth and made a mad dash for the boy's room. The teacher of that class (who knows about Chris' condition) kept her kids from going in while Chris was vomiting; both Chris and Dad appreciated that bit of dignity.

Chris finally managed to feel a little bit better around lunch time and he ate a Taco at the cafeteria. When Dad came to pick him up, he was feeling downright giddy. Dad gave Chris' new teacher a "Chris Becker Owner's Manual." It basically contains a lot of information about Chris' condition and things to look for medically about him. The guys also stopped by the media center, where Dad had to call off a meeting; he was to tell the computer guy that a meeting they had at the university was canceled. While there, the guys saw the school's chess club meet. Chris said that he would like to join and even approached the teacher overseeing their practice. She told Dad that she would get an application to Chris. They meet again around St. Patrick's Day. While there, Chris got to play one game on the "Chessmate" computer; he won the game.

The guys then stopped by McDonalds as Chris was very hungry. Then they headed home to await the arrival of Grandma and Grandpa. Chris stayed inside to listen for the phone should they call, while Dad went outside and bagged about fifteen yard bags worth of leaves. Grandma and Grandpa snuck up on him.

Chris was very eager to show Grandpa all of the awards that the Pinewood Derby car that he and Grandpa had won. Of course everyone had to play with the dog. Mom showed up a little later, and a tired Grandma asked if we could have pizza brought in (we think that perhaps someone else in the household might have coerced her).

Medically, nausea has Chris biggest concern for the week thus far. He had a dramatic bout of vomiting at school, but thanks to a teacher, he managed to get to the bathroom before he lost everything (thanks Dina). He also had a little nauseated after dinner (he didn't eat much). It seems like last week's medication (Vantin) didn't do much to help prevent the nausea. Hopefully it will help hold off the stomach cramps and diarrhea.

Joke of the day -- What do you get if you cross a zombie with a boy scout? A creature that scares old ladies across the road.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, March 3, 2004 9:48 PM CST

Hi Everybuddy!

Whew! Today's clinic visit turned into an all day stay that precluded Chris from attending school. Chris' counts were: white blood cells dropped to 1.6 (normal: 4.0 - 12.0), hemoglobin dropped to 7.4 (normal: 11.5 - 14.5), platelets dropped to 27 (normal: 150 - 450), while ANC dropped to 700 normal: 1400 - 7400). The doctor decided that because of the drops and the temporary availability of directed donor platelets, that Chris should get platelets today as well as the anticipated red blood products. This meant that, after premedication with Benedryl and Tylenol, Chris first got a red blood transfusion (which took a little over three hours), followed a platelet transfusion (which took about an hour). That, in turn, was followed by Zofran (anti-nausea medication) and the chemo infusion (Irinotecan, which took about three hours). If you do the math, that's a full day. Chris was the first kid in the clinic and the last kid out. While there, the guys learned something new: although they had been going to this clinic for over 4 1/2 years, it wasn't until today that they discovered that a parent cannot leave the child during a transfusion (which is different from the hospital's inpatient oncology ward). During all of this time, Dad has never left Chris at the clinic alone. Today, Dad was going to leave long enough to bring back lunch, but that plan fizzled, so Chris snacked throughout the day on items available in the clinic's vending machines. He was able to decide what to do for dinner though. Chris spent most of his time learning how to tie new knots and watching several movies. Thankfully, but for one small hive, there were no transfusion related problems.

Even after the clinic visit, there was not enough time for Chris to even go through the drive-thru somewhere since Dad had a meeting at school for which he was running late. Dad arrived near the end of the meeting. The guys then talked to Chris' teacher, who was helpful in getting Chris assigned to a team in his classroom (she is instituting a study team concept). The guys also waited for the assistant principal, who eventually forgot that they were there waiting for her but managed to come up with a make up schedule for Chris' missed standardized tests (FCAT). Dad will explain the proposed testing schedule to the clinic staff members tomorrow. But even then, Chris didn't get to eat since Dad bumped into the information technology guy who is developing the software for the student volunteer program. He had about an hour's worth of questions.

On the way home, Chris said that he wasn't really hungry anymore, but he asked to go to a certain restaurant for dinner. He also had three windmill cookies as an after-school snack though. Since the guys got home very late, not too much time passed before Mom got home. Soon after we were off to dinner, then a couple of errands, including the supermarket. Chris had a couple of ideas of things that he thought we should have on hand in anticipation of Grandma and Grandpa's arrival tomorrow. They're intending to watch Chris get his Cub Scout religious award on Sunday (or maybe they just missed Genie, which is also possible).

Although it was a very big medical day today, there really weren't any significant problems, but for the usual early morning bout of nausea.

Joke of the day -- What did the snowy white monster say to his psychiatrist? 'I feel abominable.'

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, March 2, 2004 9:56 PM CST

Hi Everybuddy!

Chris spent another full morning at the Tampa clinic. Another blood test was drawn; surprisingly, Chris' climbing hemoglobin count nose- dived below the transfusion point. So . . . tomorrow will be a full day at the clinic -- and probably an entirely missed day of school. Chris' teacher is fully on board with that, too. Chris' counts were: white blood cells dropped to 1.7 (normal: 4.0 - 12.0), hemoglobin dropped to 7.7 (normal: 11.5 - 14.5), platelets dropped to 30 (normal: 150 - 450), while ANC remained at 800 (normal: 1400 - 7400). The doctor decided to hold off on the red blood transfusion until tomorrow since his "type and screen" testing (used to make sure that Chris receives appropriately matched blood) had lapsed. A fresh blood sample was drawn for that purpose today. Chris also had another day of post-chemo nausea. He didn't even want to stop by McDonalds on the way to school. Despite the low hemoglobin level though, Chris keeps dancing like a madman. As a matter of fact, before his religious education class (CCD) started, Chris entertained his classmates by demonstrating some dance routines; one of the other moms wished that she had his energy. If she only knew . . ..

Chris actually went to school before his class went to lunch, so he was able to eat something; it wasn't much though. Chris had a problem with diarrhea today; the school nurse called home to find out if it was all right to give him a dose of Imodium. She had to laugh and say that Chris is really cute and very knowledgeable about which medicine to take for which symptom. When she asked Chris if she should call home (she always does), he replied, "No, I'll tell them when I see them."

After school, Chris felt a little bit better. He and Dad were stopped by several people who asked about the student volunteer program. Chris said that he thinks that it's cool but he is tiring of all the "meetings." He just wants to do it. Fortunately, at the meeting between Dad and the PTA president, there were several kids with whom he could goof off, so he didn't mind that one so much. On the way to the car, Chris was intercepted by the "Candyman" (the pastor of the church next to Chris' school). The two compared medical treatment stories (the pastor has diabetes). The two have very similar hair styles (because of maturity and chemotherapy, respectively). They always seem to enjoy a good laugh about it, too.

The guys then headed north to pick up some of Genie's things that were inadvertently left behind at the veterinarian's office (the staff didn't know where the items were when Dad had picked up Genie yesterday). Before heading home, they also stopped at the grocery store briefly. Chris proclaimed "Fireballs" as his newest favorite candy. Chris doesn't really have much of a sweet tooth (at least compared with the average American 10 year old), probably as a result of his chemo therapy. When they got home, the guys learned that Mom had successfully donated our old reliable, comfortable, but well worn sofa to charity. Chris loved the fact that now you can hear a faint echo in the den, and he pretends to sit on the "air couch." Genie is somewhat bewildered as to what happened to her favorite chair, the recliner. Ah well, the new furniture should arrive in just a few days.

Today was "Terrible Tuesday;" Chris and Dad had only enough time to pick up Chris' "God school" books and head off to class. Chris' regular teacher wasn't there today but her assistant was. Chris really liked the class today, and as noted above, he provided the pre-class entertainment. After CCD, Chris had a little down time before his Webelos den meeting. Playing with Genie was in the cards, as was a little video game effort. After a short rest, he and Dad were off again. Chris liked tonight's meeting since there was a lot to do and learn. This month's focus is the Outdoorsman pin (that Chris has already earned). There will be several optional tasks that Chris didn't do when he earned his pin, so he is enthusiastic about doing all of the events. All of the scouts congratulated him on his third place finish in the Pinewood Derby, too.

We would also like to thank those of you who have made contributions to Chris' medical trust fund. Because the gifts are made anonymously to the trust fund, we don't know who you are, but rest assured that the funds can only be used to meet Chris' medical needs that are not met by insurance. Thanks!

Joke of the day -- (thanks Uncle Tom and Jane) -- What does a farmer use to count his cattle? A cow-culator.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, March 1, 2004 9:27 PM CST

Hi Everybuddy!

Thankfully Chris' counts were sufficiently high to permit him to start another cycle of Irinotecan. Also thankfully, Dad will have Genie the Wonderdog to help him awaken Chris tomorrow morning since Dad picked her up from her three day sleep-over at her vet's office. Chris spent much of the morning at the Tampa Clinic. His blood counts were: white blood cells dropped to 2.4 (normal: 4.0 - 12.0), hemoglobin rose to 9.2 (normal: 11.5 - 14.5), platelets were only 51 (normal: 150 - 450) despite a tremendous infusion last Friday, while ANC dropped to 800 (normal: 1400 - 7400). The doctor examined him and decide to go ahead and start the chemo cycle. She and Chris talked about Camp Boggy Creek for a while (she had been his camp doctor there before).

The clinic visit was nice. Everyone wanted to hear about his adventures at camp and congratulated him for his Cub Scout pinewood derby car's third place finish (most of the nurses' sons have been Cub Scouts at one time or another). Chris also spoke with two of his favorite teenage fellow patients this morning. Both girls are interested in Boggy Creek and intend to visit the place this summer. Chris left the clinic too late to have lunch at school so the guys stopped at McDonalds (surprise). He ate well despite being nauseous after receiving the chemotherapy. Chris felt poorly even at the school's parking lot, so Dad gave him a dose of Benedryl. It's also good for nausea and is used when Chris can't have Zofran (he couldn't have Zofran at that moment because he had already had some along with the chemo itself). He didn't actually get sick, but he did fall asleep at the end of class (Dad had warned the teacher that it could occur since Chris is medicated). Because Chris had finished his work, she let him sleep. His classmates seem to be very understanding about it, too. Chris didn't do any FCAT testing but he did get to do his social studies for the week.

After school, Chris thought that he'd get to go home and play with his newly freed dog. He had no such luck though. One of Dad's meeting had been cancelled, but Chris had the opportunity to sit in another meeting with all of the fifth grade teachers about the student volunteer program. Chris told Dad that he is tired of hearing about the blah, blah, blah part of the program but is eager to get on with the actual volunteering part. He also ran some errands for the teachers, which he thought was cool as he is only a fourth grader.

Once home, he and Genie played a bit but mostly he settled down to playing a video game. It is not unusual for Genie to lay down in the recliner chair next to where Chris is playing and watch him and the movement on the TV screen. We're sure that she doesn't understand anything that she is watching on the TV screen, but she does look convincing. He likes it anyway though. They're buds!

When Mom got home, we had to go out and we let Chris pick the place: would you believe he picked Pizza Hut? He is still just a little shy of his usual weight and because he has started a new cycle of chemo, we caved in easily. The other motivation was to take him by his karate school, which happens to be located very close to that restaurant. He might be able to start again as early as Wednesday unless the cramps, nausea and diarrhea kick in (no pun intended), which are associated with this particular chemo agent. He really wants to attend the school's "Ninja night," which is just a kid's night out.

Once home for good tonight, we had a massive "dog pile" and a dog bone keep-away game. Genie wasn't her usual energetic self (we know that she hardly eats while she is boarding somewhere), but she definitely was happy to be home. We'll try the games again tomorrow.

Joke of the day -- What do you call an overweight ET? An "extra-cholesterol."

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, February 29, 2004 10:29 PM CST

Hi Everybuddy!

Chris had another spectacular weekend. We took the back roads to Boggy Creek Camp and as a result, made really good time in getting there. Because of the late start, we arrived too late for dinner, ice breaker activities and campfire, but no so late that our assigned family "pal" could not come over to meet Chris. This year's family pal was a college student volunteer with an organization called "Friends for Life." Like most of the other pals, she was from the University of Florida. "Friends for Life" is a volunteer group focused on helping pediatric cancer patients and their families. Our pal and her compatriots really helped make this a wonderful weekend.

Chris wanted to go to "Manatee time" activities during early morning hours on Saturday. That meant that he and Dad had to steathfully get dressed so as to not wake Mom (how joined them about an hour later) and went to the arts and crafts center before 7:00 a.m. Surprisingly, our family pal was there not long after the guys got there, and she really pitched in to help Chris sand and wood burn his latest creation, the "SS Cherry Blitz [spelled, "Chrry Blizts" in that strange language, "Chris-ese"). Mom caught up with the guys just before breakfast. Chris also found his friend, David, whom he met at last summer's week-long summer camp experience. This weekend, these two boys were inseparable. One of the duties of the family pals is to go to the food issue window in the community dining hall and bring back a family style meal. Both families (David's and ours) sat together, along with our respective family pals, and we all blended together quite well. Our family pal, Kathleen, is a marketing major while David's pal is a nursing student. They were both very smart and attentive to the boys.

After breakfast, the boys wanted to go to the media center and play a computer game that had challenged them last summer. It was still a challenge, but through the use of teamwork rather than competition, they made substantial progress. Their next decision was to go swimming at Boggy's 80 degree heated pool. It was a nice idea, but the day was a little blustery and the air temperature was in the sixties. Despite both sets of parents (and the pals) efforts to steer them away from swimming, the boys persevered, thanks to their knowledge of the camp's "French Fry Room." It's a room located right next to the pool so that on days such as this, the swimmers can move inside immediately and warm up through the use of heating lamps. The "French Fry Room" was designed with sick children in mind so that they can swim whenever the idea strikes them. For example, most of the time, children with sickle cell anemia cannot swim under such conditions (frequently not at all) because such temperature differences can cause medical crises. But, the "French Fry Room" along with the temperature-regulated pool, allow sick children to swim pretty much anytime. In any event, the boys and Dad got suited up, and happily, so did the two family pals. They spent about an hour in the pool playing pool games, and the girls did an excellent job keeping the boys active. It felt wonderful in the water, but it was definitely a bit brisk when they got out. Chris immediately headed for the "French Fry Room." He only needed to be in there a few minutes and was ready to head back to the locker room for a change into street clothes. Everyone in the pool enjoyed their swim. Surprisingly, Mom (who sat bundled up in jeans and a sweatshirt poolside, chatting with David's mom and a camp staff member) and Dad got the "sunburn look," while Chris (who takes an antibiotic that should have made him more susceptible to sunburn) didn't have a lick of problem.

The next stop was the dining hall for a barbecue, The guys and their pals kicked a soccer ball around for quite a while before the lunch triangle was rung. There was a two hour break after lunch, during which the camp store was open. We dutifully bought something since the money goes directly toward operating the camp. Then we went back to the cabin to play Uno. David came over and took over Dad's hand. The guys then introduced David into their hacky-sack ball game, which he won. Chris made some remarkable catches. The weird rules of this particular game is that when he does so, he helps his opponent score points. The boys had a great time.

We linked up with our family pals, who took the boys and went off to the gym, as part of the Kids Break from their parents, while the parents had the option to attend support group meetings. Chris gave Kathleen a Boggy Creek necklace that he got for her at the camp store. The family pals were into everything with them. The guys spent an hour at the gym (it's also a recreation center with arcade games) before going back to the media center to make more progress against their video game opponent. After a while, we all linked up for dinner. Soon after, the pals had a meeting and the families went over to a "beauty parlor" to get ready for the Saturday night dance. Chris ended up with a green streak of hair down the back of his head (it washed out before he went to sleep that night), a surfer's necklace, and a surfer's anklet. It's the first time that the "beauty parlor" had something for the guys.

Both families went to the dance. But for the fact that the DJ was insensitive to the fact that most of these kids have chemo-induced hearing loss as he played the music too loud (when a parent complained, the volume went down, but it crept up fairly quickly), it was a marvelous event. Chris didn't like the noise intensity so he played a variety of games (like domino knockdown, checkers, and card games) on the porch of the dining hall (where the dance was held) with either Dave or Kathleen. Eventually, the music volume decreased a bit, and Kathleen lured Chris inside to the dance. They must have danced for a half hour. Kathleen taught Chris some great dance moves, which he later showed to Mom back at the cabin. She was an excellent dance instructor for him. We didn't stay at the dance too long. Chris tired quickly probably from a combination of the early morning start, full day of activities including swimming, and having a low hemoglobin level.

Chris started the next day early too by meeting with Kathleen (who had spent a lot of her free time studying for two upcoming exams) at the woodshop. They, and Dad, finished staining Chris boat and then started work on a candle stick for the Kid's Olympics candle. The next project was a wood burned picture of Spongebob Squarepants. The guys noticed that Kathleen had misplaced her name tag (bad voodoo at Boggy Creek) so Chris decided to make her a custom one out of wood and the wood burning kit. It worked quite well and kept her from "shaking her bushy tail" (don't ask). Soon after, it was time for breakfast and after that, cabin cleanup.

We made short work of cabin cleanup and loading the van and moved off to the camp theater. Chris and Dave were in two short skits (out of about 15) about Cherry Blitz (a drink that they had invented during last summer's week-long camp). The two skits were supposed to build off of one another, but for some reason, the camp staff operating the theater made changes to the order of the skits. The last minute schedule change didn't work out well and so many in the audience didn't "get it." Nonetheless, the two boys (along with another friend) had a good time, and the audience of parents duly applauded. Chris was also picked to be in a funny ballet skit and was int the background doing a silly pirouette. Our family pal sat with us during the performances. We were also quite pleased to see that one of Chris' teenaged friends from the Tampa clinic functioned as an assistant master of ceremonies for the presentations. She'll be a good camp counselor there someday. Also, his friend Taylor did a marvelous job performing even though bound in her wheelchair. A heart knows no bounds. We learned that she had also gone horseback riding the day before. Sadly, we bade farewell to our family pal and the camp, but we had an enjoyable drive back to Tampa.

Once home, we all pitched in to get everything out of the car, cleaned, and put away. As always, we never know when the next hospital stay may be, so we need to have everything clean and ready to go on short notice. It was a little sad getting home though because there was no dog there wagging her tail. Not to worry though, Genie the Wonderdog will be home tomorrow. She had to "camp" at our vet's office for the weekend. After we got home, Chris also made a very important phone call to his friend, Greg. Greg had volunteered to race Chris' pinewood derby car, "Golden Retriever" while Chris went to family camp. Chris and Grandpa made the car last winter but Chris wasn't able to race it last year as he was in the hospital. Chris was quite happy to learn the car came in third place for the pack and second place in his patrol. This probably means that it will go to the District competition sometime in March. Chris called Grandpa and told him that their labors had paid off and to thank him.

Medically, Chris did quite well. He was a little dizzy for a few minutes when we got home but that soon went away. We'll speak to the medical team about that tomorrow. Hopefully he is in good enough shape to start another cycle of chemotherapy (Irinotecan) again tomorrow morning.

Joke of the day -- What do misbehaving football players drink? Penal-tea.

We would like to ask for your thoughts and prayers to be especially directed toward another young friend of ours, Becca, who has been struggling very hard with her neuroblastoma recently. Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, February 27, 2004 3:47 PM CST

Hi Everybuddy!

We are leaving shortly (just as soon as Mom returns from a meeting at the hospital) to spend the weekend at Boggy Creek Camp (financed mostly by Paul Newman). Chris goes there with hundreds of kids with cancer over the summer and during the winter, they have weekend family camps. As luck would have it, it has dipped down into the low fifties today so it will be chilly by their lake. We'll be "camping" in heated cottages thankfully.

Before we could leave though, Chris had to go to the Tampa clinic and school. He has had really low counts lately. So they were again. His blood counts were: white blood cells rose to 4.0 (normal: 4.0 - 12.0), hemoglobin dropped to 8.1 (normal: 11.5 - 14.5), platelets dropped to 8 (normal: 150 - 450), while ANC rose to 2200 (normal: 1400 - 7400). The doctor decided that platelets were a must (we came back around lunchtime for them) but since Chris was dancing around being Chris, she held off on the red blood products until Monday's CBC results are known. They did draw a type and screen just to be prepared.

Chris was a little "bummed" that Genie had left for her weekend "sleepover" at her vet's when he got home. He wanted one more dog pile. She didn't seem nervous when Dad dropped her off but she refused to carry her rope toy in. They treat her well there though and she was waging her tail at everyone and played with a little girl for a bit.

We've decided again not to take a computer so please do not expect to see an update before Sunday night. We hope that you enjoy your weekend as much as Chris is hoping to enjoy his.

Joke of the day -- Monster: Doctor, doctor, what did the X-ray of my head show? Doctor: Absolutely nothing.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, February 26, 2004 9:26 PM CST

Hi Everybuddy!

Today was about as normal a day as it gets for Chris. He actually got to go to school about the same time as when everyone gets there. This was good since it was his new teacher's very first day. Chris thinks that's she is nice but more strict than his previous teacher. Dad told him to be patient and give her time. Dad met her after school and briefed her on his upcoming treatments. She seemed quite nice to him.

After school, Chris and Dad meet with some of the ladies on the committees for the student volunteer program, then they headed over to McDonalds for "dunch." The usual crew was on at the usual place at the usual time for Chris to order the usual meal. One girl in particular seems to take his order so he gave her a happy face pin (she put it on immediately). Well, they did help him gain back some of his weight.

The guys picked up the "dunch" and headed home; Chris had some things to do before his Cub Scout pack meeting. Homework was one of them and he had to rewrite a story using a slew of antonyms and thereby change the story completely around. He needed help, so he called Dad in on it. Actually, Chris had a good system in place to control the substitution of 24 words but he was discouraged by the size of the required effort. All Dad did was read sentences and ask for the correct antonym, which Chris correctly provided. He had to laugh at the request for help, after it was all said and done.

After that effort, Chris had two more things left to do in order to earn two more Webelos pins. The first one was to learn the rules governing outdoor fires (no problem). The last task was to do something with his obstinate computer. Whew! He got through that despite the computer. Later in the evening at the pack meeting, Chris was awarded the craftsman, communicator, and outdoorsman pins as well as a compass point for his compass patch. Amazingly, he is close to having earned every pin that a Webelos scout can earn. Chris also told Dad that he is very interested in going back to karate classes; he misses the "Ninja Night" events. We'll see if he starts chemo next week.

Soon after the pack meeting, we headed over to Greg's house to drop off Chris' Pinewood Derby car, dubbed "Golden Retriever." He will be at Boggy Creek Camp this weekend when the race is slated to be run, so Greg offered to race it for him. Last year, when "Golden Retriever" was made, Chris was in the hospital, so it didn't get to run. He and Grandpa had worked on it in his woodworking shop, and Chris felt that he owed Grandpa an answer as to how well it could race.

Medically, Chris had a good day and had no issues other than the low blood numbers and bruises.

Joke of the day -- Doctor, Doctor I'm boiling up! Just simmer down.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, February 25, 2004 9:26 PM CST

Hi Everybuddy!

Today was another Tampa Clinic day. Surprisingly, Chris is still hovering above the transfusion points for platelets and red blood. The medical staff want him to return on Friday now (Dad's not all too happy about that call) but at least Chris will be able to spend the whole day with his new teacher (tomorrow will be her first day). Chris' blood counts were: white blood cells rose to 4.1 (normal: 4.0 - 12.0), hemoglobin dropped slightly to 8.3 (normal: 11.5 - 14.5), platelets dropped to 23 (normal: 150 - 450), while ANC rose to 2100 (normal: 1400 - 7400). Dad was again told to continue administering the G-CSF shots. Friday could be a hectic day if Chris needs red blood and platelets; we are supposed to travel across the state to Boggy Creek Camp for Family Weekend. Chris hung out with his friend, Christina, and her sister, Ashley, while waiting for his blood test results. Chris invented a story about the "Napkin Man" (similar to the children's song, "The Muffin Man") that had everyone laughing.

Chris would have liked to stop for a snack today but he decided to head right to school. Afterwards, he and Dad stopped by the library to coordinate something and then Chris made up for not stopping for breakfast by again asking to stop for "dunch." Dad agreed, then the guys went back to the clinic where they had about four new medicines to pick up. Dad also needed clarification about when to start one of them and coordinated stuff for Friday, should Chris need blood transfusion(s).

After he returned home, Chris worked on his homework, then he and Dad finished up the last two projects that Chris needed to finish in order to receive his craftsman pin at Thursday's Cub Scout Pack meeting. They then watched part of the movie, "Spy Kids, 3D." Afterwards, Chris continued play on a video game. He was surprised to see that Genie had not removed a red bandanna that he put on her this morning. She even seems to like it. It makes her more stealthful since it interferes with the jingle of her dog tags. Genie got several big workouts today, and for the first time today showed an uncanny ability to analyze where her dog rope was going to be when it was thrown during keep-away. She made a least a dozen difficult interceptions.

Medically, Chris had a good day and had no issues other than the low blood numbers and that he still has a lot of bruises. He was a little bothered by questions asked by some giggling 4th grade girls (from a different classroom than his own) about whether he had "brain cancer or something." The questions may have started out in jest (probably started because of the low quantity of hair on his head), but Chris answered them matter-of-factly and wasn't put out "too much."

Joke of the day -- Teacher: You aren't paying attention to me. Are you having trouble hearing me? Student: No, I'm just having trouble listening.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, February 24, 2004 8:55 PM CST

Hi Everybuddy!

Chris spent another day at the Tampa clinic (just as he will again tomorrow), where the medical staff are closely monitoring his red blood and platelet levels. His white blood counts were not good enough to win him a reprieve from his G-CSF shots. So that's another reason why it's good that maybe Chris will get another week before starting chemo (Irinotecan) again. Chris' blood counts were: white blood cells dropped to 2.8 (normal: 4.0 - 12.0), hemoglobin rose slightly to 8.4 (normal: 11.5 - 14.5), platelets were 36 (normal: 150 - 450), while ANC dropped to 1200 (normal: 1400 - 7400). Dad was told to continue administering the G-CSF shots. The significant information from Chris' most recent "full panel" blood test are the following: ALT rose to 96 (normal: 12 - 34), AST dropped to 46 (normal: 22 - 44), and BUN/CRE Ratio remained at 18 (normal: 15 - 24). These are factors indicating that his liver is having to work harder to clear the toxins out than it did a month ago.

After a brief stop for a traditional snack, Dad dropped Chris off at school. Chris had a great time at school, although he couldn't specifically say what was good about it today. He came home in a happy mood though. Maybe that was because his class didn't receive any homework because of the arrival of his new teacher. Dad spoke with Chris' principal today, who said that (obviously) Chris should get his chemotherapy whenever the medical folks believe it is best for him, and that somehow the school will ensure that the FCAT (standardized testing at school) will be worked out around it. When Dad picked up Chris this afternoon, Genie went along, too. Of course, some of Chris' friends came over to pet her. She loved it, too. The guys did not stop by McDonalds for Chris' usual "dunch." Today was "Terrible Tuesday," but without Cub Scouts. At "God school," the kids had a mini-Mardi Gras party and discussed the upcoming Lenten season.

After he returned home, Chris, Mom, and Dad worked on a couple of Cub Scout tasks that Chris needs to finish before Thursday's Pack meeting. Chris also played a video game on which he has been working. He got his wish for dinner (as Mom and Dad weren't feeling up to doing much): pizza. We hope that the tomato sauce is doing something good for him. He also enjoyed the spoof movie, "Spaceballs."

Medically, Chris had a good day and had no issues other than the low blood numbers and that he still has a lot of bruises. Fortunately, he has not yet succumbed to Mom's flu-like symptoms. Hopefully he won't. Both of them are taking care to wash hands very frequently and to not get in each other's faces.

Joke of the day -- What is a mermaid's favorite song? Salmon-chanted Evening.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, February 23, 2004 9:05 PM CST

Hi Everybuddy!

It was a weird sort of clinic day. Fro some reason, the morning session went very slowly. After Chris got his blood test results, Dad learned that Chris wasn't going to start chemo today after all. It was a good call by the doctor, but it threw off a plan and schedule that had been put in place seven weeks ago to have that all behind him before he starts FCAT (standardized testing at school) next week. (Oh well, it's not like Chris ever seems to stick to a medical plan anyway.) After having had a platelet count of 85 on Friday, he needed platelets again today since his count had dropped to 10. Chris' blood counts were: white blood cells rose to 3.4 (normal: 4.0 - 12.0), hemoglobin dropped to 8.3 (normal: 11.5 - 14.5), platelets dropped to 10 (normal: 150 - 450), while ANC rose to 1800 (normal: 1400 - 7400). Dad was told to continue administering the G-CSF shots. At this point, Dad had to get the medical team and school team thinking about how to get Chris through both chemo and the FCAT, which may well be done at the same basic time. Dad had to ensure that a make up testing session is available if Chris cannot make it through the regularly scheduled test dates. Life is never easy. The good news though is that Chris has gained most of his weight back, so he obviously did a good job of eating while camping. Chris had to return to the clinic this afternoon for platelets. He was going to be there anyway for a post transplant EKG and Echocardiogram.

After a brief stop for a snack, Dad dropped Chris off at school after having spent two hours at the clinic this morning. Chris had art class today (they're making masks) as well as social studies (which he says involves mostly reading). We learned that he will have a new teacher starting on Thursday. Ironically, like her predecessor, the new teacher's mother is also a teacher at Chris' school. Dad picked up Chris and then laid in ambush for the assistant principal to discuss the FCAT/chemo problem. She said that the school would work around the problem but there are still some more details to iron out. The guys then stopped by McDonalds for Chris' usual "dunch."

The second clinic visit was for another fours hours, during which the guys encountered a new Echocardiogram technician, who wasn't very kid friendly (that's surprising for a hospital/clinic called "All Childrens Hospital"). Chris hopes not to have to deal her again, and he rarely says anything like that. She told Dad that Chris wasn't supposed to get an EKG today, so she didn't do one. She was in error, but one of Chris' usual nurses was able to do it herself. Once Chris finally got to the transfusion room for platelets, he joined a teenage girl and one about his age. The teenager just loved Chris' new raccoon skin hat, and even modeled it herself (she is currently "hair challenged"). Everyone had a good laugh. She treats the younger kids with respect and they all love her. Chris' platelet transfusion went well. He did his homework, read a video game strategy guide, and watched the DVD, "The Gods Must Be Crazy" during it.

The second clinic visit took so long that Mom actually linked up with the guys after work. She and Dad have some sort of bug (Mom is in bad shape), so we decided that we all needed a cheer-up meal at nearby Mel's Hot Dogs. It worked. We all got something of a second wind long enough to go get Chris some new shoes. The burst of energy petered out at home though. Much to Genie's disappointment, there wasn't even a dog pile tonight (she played with her toys instead). Since his homework was done, Chris played a video game for a bit.

Medically, Chris had a good day and had no issues other than the low blood numbers; it was obvious that he needed platelets since he kept getting bruises at his G-CSF shot sites.

A collective groan went through the family tonight at story time when we realized that it was too late to call Aunt Jackie and wish her a Happy Birthday. She was saved from having to listen to our terrible singing. Happy Birthday Aunt Jackie!

Joke of the day -- What do you get if you cross a jellyfish and an aircraft? A jelly copter.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, February 22, 2004 9:22 PM CST

Hi Everybuddy!

Chris had a great time camping with his Cub Scout pack at Disney's Fort Wilderness campground. It is a wonderful campground that offers a lot of things for the kids (ok, adults too) to do. Once Chris got clearance from the medical staff to be able to go camping (his blood counts were low on Friday), we hit the road toward the Magic Kingdom. Chris played a video game enroute to the campground after munching on his usual "dunch." Upon arrival at the campground, we dropped off Genie at the kennel (which is quite nice and right there at the campground, albeit a couple of miles away). Throughout the weekend, Dad rode his bike to the kennel and kept Genie on her usual routine. In keeping with her nature when traveling, Genie didn't eat hardly anything at all for the two days there -- not even Scoobie snacks. Back at camp, we hit the trail and walked around the rather large campground. We dined at the lodge on the lake, where Chris got his wish for some pizza without even having to ask for it (believe it or not). Chris invested some of his money and bought a raccoon skin cap (like Davy Crockett's). He wore it for the rest of the camping trip.

After roughing it in a (large for us) Disney tent, Chris saw Greg for a moment the next morning, but then Greg and his Dad went off to do some boating. After getting his G-CSF shot (yes, even in the woods), we walked the few miles to the lake and then hopped a ferry boat then took a monorail tour of several Disney resort hotels. They are almost like parks unto themselves. The favorite for that day was the Polynesian Resort. There, Chris was presented a lei and invited (which he accepted) to make a surfer's ankle band (also made of flowers like a lei). He also bought Mom a pin that says "Best Friend" and attached birthstone charms representing himself, Mom and Dad. On Sunday, he added another charm of Mickey's dog Pluto signifying Genie.

We got back to the campground with plenty of time to set up a croquet course and a playing field for the game, "Capture the Flag." Mom ran the croquet game while Dad (along with several other referees) organized and ran the Capture the Flag game. Both games were quite the hits with the kids. Many of the adults were very surprised (as were Mom and Dad) at the number of kids (ranging from 4 - 12 years old) wanted to learn to play croquet. In fact, until "Capture the Flag" got started, there was a line as kids waited their turn for mallets. Just as surprising was the fact that none of the then-hungry kids who played "Capture the Flag" wanted to quit the game even though dinner was ready. All who participated received a combination compass/whistle and some of our friends' Mardi Gras beads (again, very big hits with the kids). After dinner and the perfunctory marshmallow toast (compliments of the "S'mores Patrol"), everyone headed over to the campgrounds outdoor theater, where the Disney crew shows a different movie every night of the week to its campers. Last night's film was one of Chris' favorites: "Toy Story 2."

After another cool night in the sleeping bags, we left camp early enough to get back home by mid-afternoon (well, of course we couldn't leave until after Chris had his G-CSF shot and other medicines). We picked up Genie (who received her very own "suitable for framing" certificate recognizing her as a "Very Important Pet)" and made a stop at Disney's Wilderness Lodge, which is a replica of Yellowstone's lodge at Old Faithful. It is amazing and complete with a a "spring-fed" waterfall and rapids which lead into the hotel's pool complex, and "geyser field." We added a new bear to our bear collection (there is an artist in Montana who carves them). Chris also added Roger Rabbit and Jessica Rabbit to his pin collection. He also ate his first breakfast pizza, which had cheese, scrambled eggs and sausage. He didn't like the looks of it but tasted it anyway. He liked it and ate fairly well.

The drive home began tediously due to unnecessarily heavy traffic (bumper-to-bumper traffic but no apparent cause for it -- that's frequently the case on I-4, which connects Orlando and Tampa), although it eventually improved. On the way back home, Chris watched the movie, "Miss Congeniality" and goofed off with Genie a bit. He also asked for McDonalds for lunch (even after a good but late breakfast).

Once home, we pitched in to get everything out of the car, cleaned, and put away. Genie was happy to be home, and joined in a few dog piles. We took a break to go to dinner and a quick supermarket stop.

Medically, Chris did well and endured the shots in the woods well, although on Saturday, the needle must have hit a capillary because it bled quite a bit, and Chris has a nice bruise to show for it. This morning's shot went well. Hopefully he is in good enough shape to start another cycle of chemotherapy (Irinotecan) again tomorrow morning. Believe it or not, he's looking forward to it, even though this is the stuff that has made him sickly and weak, because he misses classroom time (typical kid in that regard).

Joke of the day -- (a long one, thanks to our friend James and his mom) -- What is in a name? The famous Olympic skier Picabo Street (pronounced Peek-A-Boo) is not just an athlete, she is a nurse currently working at the Intensive Care Unit of a large metropolitan hospital. She is not permitted to answer the telephone, however, as it caused simply too much confusion when she would answer the phone and say, "Picabo, ICU."

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, February 20, 2004 1:02 PM CST

Hi Everybuddy!

We are leaving shortly (just as soon as Chris gets out of school) to join the rest of the Cub Scout Pack for the annual weekend of camping at Ft. Wilderness. That means we'll be camping the Disney way.

Before we could leave though, Chris had to go to the Tampa clinic and school. He was so happy about his blood counts today that he asked for his very own copy so that he could "frame" it. The nurse was only happy to oblige. Actually, they're not by any means that great since they are generally sliding downward, but Chris was very pleased with his platelet count. His blood counts were: white blood cells dropped to 1.7 (normal: 4.0 - 12.0), hemoglobin dropped to 9.8 (normal: 11.5 - 14.5), platelets jumped to 83 (normal: 150 - 450) thanks to Wednesday's double-dose transfusion, while ANC dropped to 500 (normal: 1400 - 7400). In order to go to school and to camp, Chris had to begin his G-CSF shots again in hopes of pumping up his immune system. Otherwise, he had a good day and no other concerns.

In any event, due to the impracticality of using a computer while tent camping (it's true, even at Disney World), please do not expect to see an update before Sunday night. We hope that you enjoy your weekend, too.

Joke of the day -- What did the alien say to the gardener? Take me to your weeder.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, February 19, 2004 9:31 PM CST

Hi Everybuddy!

Chris' day was pretty normal but for running into Dad several times at school. After Dad dropped Chris off at the drop-off point, he then spent the day running the school's "Battle of the Books" Jeopardy competition for all the fourth grade classes. There are about twenty-four books that were earmarked for the kids to read (optionally) in order to help them see how much fun reading can be. (Chris didn't read too many books that were on the "Battle of the Books" reading list but opted to read many others.) Dad was the narrator/master of ceremonies for one station, which played much like the TV show, Jeopardy. Chris went through the game but kept getting beat out by other classmates at the buzzer. The kids really had a good time and many were very well prepared. Chris kept having to come back into the Media Center (where the Battle of the Books was being conducted) and he kept bumping into Dad. On one occasion, Chris came in with his peer mediator buddy and some kids for mediation. On another occasion, he was just an escort for a classmate.

The last competition ended just moments before the end of school, so Dad just made it to the link up point with Chris. He was starving again so the guys went to "you-know-where" for "you-know-what." Talking to the staff at the drive-thru is now just a formality. Chris had his homework done before he got home, so he focused on playing with Genie and playing a video game from Disney. This game is very challenging and he enjoys it a lot.

Medically, Chris had a good day and had no issues and is tolerating a new medicine that he is taking in the hopes of forestalling a lot of the stomach cramps, diarrhea, nausea and vomiting associated with next week's chemo, Irinotecan. Interestingly though, Chris was emotionally very distant tonight at bedtime. Eventually (after some gentle prodding from Mom), he broke down in tears and said essentially that he felt confused by the more teenaged related things to which he has been exposed recently. He said that on the one hand he felt more grown up, but on the other hand, he really missed being a plain ol' kid. Then he voluntarily handed Mom a stack of Simpsons cartoon books, as well as a couple of "T" rated video games. He didn't want them "donated," but perhaps put away for a while. Mom will certainly make that happen. She found it interesting though that Chris recognized this himself.

Joke of the day -- (hey Cate) -- How do you know when there is an elephant under your bed? When your nose touches the ceiling.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, February 18, 2004 8:53 PM CST

Hi Everybuddy!

Chris had another long day at the clinic. He needed platelets again, and boy, did he get some! The last member of the blood team who donated platelets generated two bags of seven units each (that's a lot!). Chris got both bags today in back-to-back transfusions. Genie got him going this morning by plopping her rope right under his chin and then went after it -- which sort of tickled, apparently by Chris' reaction.

Chris ate moderately well (waffles) and then the guys took off for the clinic. Chris saw his friend Christina and even sang "Happy Birthday" to her mom. The guys learned that Christina would probably be able to attend Boggy Creek camp this summer. That is quite an accomplishment after her type of transplant she had last summer.

Chris' blood counts dropped all around, not surprisingly, he needed platelets; Dad was told to bring Chris back for the transfusion this afternoon. His blood counts were: white blood cells dropped to 2.1 (normal: 4.0 - 12.0), hemoglobin dropped to 10.3 (normal: 11.5 - 14.5), platelets dropped to 16 (normal: 150 - 450), while ANC dropped to 900 (normal: 1400 - 7400). Dad also received some guidance from the oncologist about Chris' upcoming tooth extraction: don't do it while he is receiving chemotherapy. That is what exactly we expected to hear. He was cleared to attend school today though.

Chris got a chance for a second breakfast attempt (one might think that he was a Hobbit or something). He had some "cini-minis" and went to school fortified for the tough work there. While he was at school, some packages arrived for him at home from some old Army friends. Louisianans, they wanted to ensure that Chris (and probably about 500 other kids and nurses, particularly when considering their previous gifts over the years) have a splendid Mardi Gras celebration this year. They sent so much this year that there is enough Kings cake and beads for all four fourth grade classes at Chris' school, the patients at the Tampa clinic, and the Cub Scouts with whom Chris will be camping this weekend. Whew! Chris hopes that someday he might be able to see an authentic Louisiana Mardi Gras. Dad told him that he'd have to wait at least a couple of years for that request. Thanks Judy and Mike -- again!

Right after school, the guys made a brief stop for Chris to get a "dunch" and then went to the clinic. Amazingly, traffic was terrible and Dad was concerned that the platelets might expire (platelets have a very short shelf life and need to be used quickly). They were good though. Chris saw his favorite doctor. She prescribed a new antibiotic in the hope that it might make this next cycle of Irinotecan (due to begin next Monday) less arduous in terms of stomach cramps, diarrhea, nausea, and vomiting. It apparently tastes bad, but Chris said he'd gladly give it a try. He is still down two pounds from the last session. The platelet transfusions went quite well today and Chris had a good time goofing off when he wasn't doing his homework.

Medically, Chris had a good day and had no issues although it was obvious that he needed platelets.

Dad also received some bad news at the clinic. A little girl who used to really like Chris (she was maybe three or four years old) has passed on. She and her family left Tampa about eight months ago in order to do a bone marrow procedure in Tennessee. The donor was to be either her brother or sister (her sister eventually was selected). It didn't work, and she passed on earlier this week. She and her family were just as friendly as can be, and she adored Chris. Yet another brave child is gone.

Joke of the day -- (hey Cate) -- What do you call an elephant that has had too much to drink? Trunk.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, February 17, 2004 9:46 PM CST

Hi Everybuddy!

Chris had a "normal" kids day; he went to a full day of school and did all the usual "Terrible Tuesday" stuff. Today was his first day without his beloved teacher, who was promoted last week and is now serving in a different school. Chris thinks that his new temporary teacher will do well though. School was fine, although it was obvious that the 4th graders miss their teacher.

After school, The guys stopped by McDonalds for a "dunch" (the usual chicken thing) and then headed to the university so Dad could drop off something to our friend, Les. Chris was disappointed that the guys didn't get to see him but was slightly appeased when they decided to stop at the university's bookstore, where Chris found a "rare" strategy guide for one of his video games. Hmm, maybe video games are a course there?

Their next stop was home since Chris had math homework to do. He really made quick work of it (and it was correct, too). Because today was "Terrible Tuesday," the next stop was at "God school." When Dad went to pick Chris up afterwards, the class must have gone into the church or elsewhere; they weren't in their usual classroom. Dad watched Chris and his friend, Greg, race back to the classroom. Chris ran fairly well, even though he isn't much of a runner. He wasn't even too badly winded, unlike usual (but in a good way).

Chris also saw Greg at the Cub Scout den meeting tonight. The first thing they learned was how to make a drinking cup from paper (a good skill for first aid purposes, also). The boys then made a "Hum Dinger," which is made with a button and thread. If you spin it tight enough and then move your hands back and forth the right way, it hums. The boys also received a wooden attack helicopter kit. It just so happens that it is the type that Dad used to fly, so he made up a handout about it and told the scouts about what it can do and then let them all try on his old flight helmet. Surprisingly, the helmet was tight on some of the kids' heads. They seemed to like it and will hopefully put more effort into making their model helicopters. When Chris finishes his helicopter project, he will have earned the Craftsman pin. The family that conducted this month's scout training did a great job, Chris really liked the projects.

Medically, Chris had a great day and had no problems but for some petechiae (including one that's about 1/4 inch in diameter, which is pretty big for such things). We fully expect that he'll need a platelet transfusion tomorrow. He ate well today.

Joke of the day -- Doctor, doctor, I've swallowed some uranium. You've probably got atomic ache.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, February 16, 2004 9:20 PM CST

Hi Everybuddy!

It was a nice day for Chris although he didn't get to sleep in so late, even though there being no school today. He started his day just like every other Monday though -- with a trip to the Tampa Clinic. Getting to the clinic was troublesome as Chris went from feeling very well when he woke up, to having stomach cramps and then vomiting in the car in the driveway. As soon as that was over, he was fine. The clinic visit went fine, too. Chris got to see his friend Christina and one of his teenage girl "groupies" (who really is a nice young woman). Today, Chris just had a routine blood test. His blood counts were: white blood cells rose to 2.9 (normal: 4.0 - 12.0), hemoglobin dropped to 10.6 (normal: 11.5 - 14.5), platelets dropped were 33 (normal: 150 - 450), while ANC rose to 1400 (normal: 1400 - 7400).

Because Chris had lost his breakfast in the driveway, the guys did a shopping chore at a place that also had a food bar where Pizza Hut pizzas are sold. When Dad asked Chris what he wanted, Chris said pizza, then said, "oops" (thinking that he had violated his promise not to ask for pizza for the rest of the week). Dad "rescued" Chris from his dilemma by saying that it wasn't a factor since Dad had done the asking. Chris ate the pizza heartily, which was fine, especially since there is another cycle of Irinotecan coming up next week. Chris is still a few pounds down from the last cycle.

The guys looked around on their shopping quest, but didn't have any luck. Well, at least Dad didn't, but Chris got a package of "Magic" cards to add to his card game collection. With Dad standing off a little ways, Chris went through the checkout line all by himself. He had a very nice cashier who, Dad noticed, looked around to make sure that a ten year-old boy wasn't out all by himself. The transaction went well and Chris was happy about his bit of independence.

After a brief stop for gasoline, the guys went to one more place. An upcoming tree project at home will require the use of a grappling hook, so the guys stopped at a surplus store to get one (billed as a Ninja climbing rope). It will be adequate for the tree trimming but for some reason the "Ninja rope" got Chris thinking about karate again. We'll see, come Wednesday.

On the way home Chris got a call from Greg firmly fixing their get together time. Chris had a few hours to kill, so he and Dad painted some stands for some Cub Scouts' Pinewood Derby cars, watched a movie, and played a game. Dad also fed Chris rice, a hot dog, and watermelon (perhaps a strange February combination, but getting those calories in is what counts), which Chris ate in good order despite having had pizza a few hours earlier.

Dad could tell that the two had fun when Greg's Mom dropped Chris off after their fun. Despite having batting practice, Greg didn't seem to want to leave the house. The two took on their favorite make-believe evil villain: Genie. She was being chased by laser pistols again. She is inordinately skilled in making a clean getaway.

Medically, Chris had a great day except for fifteen minutes in the car on our driveway as the guys tried to leave for the clinic. His feet look much better and one of the nurses even commented on them. He ate well today and had a dinner of KFC popcorn chicken, cinnamon apples and "vegetable-laced" gummi bear supplements (Chris make his own food pyramid).

We received a brief update from Allie's Mom. She had very good news: for the first time in four years, Allie's tumors have shrunk a bit. Chris was quite happy about that news, too.

Joke of the day -- What do you call a man with two left feet? Whatever you like -- if he tries to catch you, he'll just run round in circles.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, February 15, 2004 9:12 PM CST

Hi Everybuddy!

It was a relatively quiet day for Chris. Dad and Genie woke him up as usual, but today Genie was really into licking his face. Despite his best effort, Chris couldn't stay "asleep" through that onslaught. Today Chris got a surprise after church. A member of the choir, who seems to have really taken a liking to him, gave Chris a Valentine's Day card with a little surprise in it. Chris was very surprised and gave her a big hug.

He "really really" wanted Papa John's pizza today for lunch. Mom initially said no since he had pizza from Pizza Hut last night, but Chris went on imploringly and offered a deal: pizza for lunch and he won't ask for it again for a whole week. He also said that if he forgot and asked for it anyway, then he would "ground" himself for an entire year (yeah, right). Mom caved in on the lunch pizza though since he has only recently started eating heartily and wanted to work with his metabolism while it's kicked into higher gear.

After a little down time after church, we all went grocery shopping. Times have been hectic lately, so we had a lot to do in the supermarket. Once home from shopping, Chris mostly played games and was inordinately silly all the way through the afternoon and evening, even up to bedtime. He had a pleasant surprise today: our friend Cate came over for dinner. She gave him a belated birthday gift, and he gave her his belated Valentine's gift. It all worked out just fine. Everyone then played the Lord of the Rings Monopoly (boys against the girls); Chris ended up "ruling" Middle Earth. All we can say that, between him acting silly and Genie sliding her new beef bone dog chew on the tile floor, things were a little crazy.

Chris also got a call from Greg; they have made plans to get together tomorrow (no school due to Presidents' Day). Chris was also concerned that for the second year in a row, he wouldn't be able to race his Pinewood Derby car (the race occurs on the Saturday that we're scheduled to be at Boggy Creek camp (a camp for kids with life-threatening illnesses). Greg and his parents assured Chris that his car would make it onto the track and race, with or without him. He was very happy about that.

Medically, Chris was in about as good of shape as he can be right now. He was silly and dancing throughout the afternoon, a mood which matched the beautiful weather which has caused the azaleas to start blooming. He had no side effect issues today and ate well at all meals.

Joke of the day -- Waiter, bring me something to eat and make it snappy! How about an alligator sandwich, sir?

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, February 14, 2004 9:16 PM CST

Hi Everybuddy!

Chris had a neat day today despite not making it to the second part of his friend's birthday party. He woke earlier than normal and ended up hanging out in the den playing a video game. That's where Dad found him before making him some waffles. Chris was a member of the breakfast edition of the "Clean Plate Club." Not long afterward, the guys headed over to a special Cub Scout meeting, where the scouts painted wooden stands for all of the pack's Pinewood Derby entrants. The "dad-in-charge" for this event also showed Chris what the inside of a computer hard drive looked like and gave him two very powerful magnets that came from inside a computer. He and his son also make and fly rockets. Chris was very much impressed by one rocket that takes pictures while in flight.

The guys then headed home and picked up Mom to take her to a real Valentine's lunch (Chris and Dad-style): Mel's Hot Dogs. It worked, even though she went for a corn dog and backed beans. (Obviously, she's not a purist.) After lunch, we headed over to a nearby theater, where we watched the movie, "Cheaper by the Dozen." It was really pretty good and had a good soundtrack. Chris enjoyed the movie a lot. After shopping in the mall for a bit, we headed for home, where Chris spent his evening playing video games, talking with both sets of grandparents, and later, eating pizza and playing with Genie.

Medically, Chris was in pretty good shape today despite the low counts. His appetite is very much approved and he has gained back one pound. He only had one moment when he felt a bit nauseated, but it passed fairly quickly.

Joke of the day -- Doctor, Doctor you have to help me out! Certainly, which way did you come in?

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Happy Valentine's Day!

Love,

Chris, Alison and Pat

Friday, February 13, 2004 10:20 PM CST

Hi Everybuddy!

Today turned out to be a "Friday the Thirteenth" kind of day for Chris. It started at the Tampa Clinic, where Chris got a routine blood test. Chris' blood counts were: white blood cells dropped to 2.0 (normal: 4.0 - 12.0), hemoglobin rose to 11.7 (normal: 11.5 - 14.5), platelets dropped to 16 (normal: 150 - 450), while ANC dropped to 600 (normal: 1400 - 7400). Especially because Chris had a party to attend tonight, the ANC of 600 was disconcerting. He also had one more dose of chemo to take tonight. The doctor decided to administer one dose of G-CSF in order to help his sagging ANC. Chris was allowed to attend school, but he left the clinic with the understanding that he'd be called back to get platelets after that was arranged.

This morning's clinic visit didn't take long and Chris was eager to get back to school for his teacher's farewell and the class' Valentine's party. As fate would have it (and with it being Friday the 13th), Dad had to pick up Chris at the very same time that the party was getting started. Chris was very sad that he didn't get to attend his teacher's farewell. He also said that with his luck, he wouldn't be able to go to tonight's birthday/slumber party.

Today's platelet transfusion went quite well. Chris was in the infusion room with two teenage girls (who think that he's cute). He had a good time goofing off with one of the nurses. He even shared his French fries (the guys had made their usual stop at McDonalds so that Chris could have lunch on the way in). Chris also brought in six board games (like Monopoly Junior) that he wanted to donate since he no longer plays the "junior" version.

After the transfusion, the guys made one brief stop for some last minute shopping. Once home, Chris wanted to layout all the "stuff" the guys had gotten for Mom for Valentine's Day since he was going to be at a slumber party tonight and tomorrow morning. They then finished packing all of his party stuff. When Mom got home, we packed up the car and headed over to the party. Unfortunately, when we arrived at the party house, we learned that the younger brother of the host/"birthday boy" had both cold symptoms and a fever. We then went into a huddle to decide if Chris could stay. One the one hand, Chris had low blood counts. On the other, he had just received a G-CSF shot. We also knew that he had also just taken his last dose of chemo, so the benefit of the G-CSF was not certain. We were sort of in a tie, so Dad called Chris over and explained things. Chris decided that it was probably the best to leave, although he was very disappointed. Such is life for a cancer patient.

In consolation, we let Chris pick a restaurant for dinner. He chose the "salad restaurant," much to the surprise of Mom and Dad. We thought that it might be because it is near the comic book store, but Chris said didn't want to go there. Mom and Dad insisted, Chris "caved in" and wound up with a new card game and comic book. He perked up. While working our way along the salad bar, Chris (who was still thinking about the party) laughingly told Mom and Dad that he thought the reason that the parties fell through for him today was because it was Friday the thirteenth. So as to not lose the spirit of being able to stay up past his bedtime, Chris also watched the movie, "Sneakers." He liked the spy tale but also thought that it was a little spooky (no pun intended), a little over his head, and he was definitely tired when he went to bed at about 10:45 p.m.

Medically, Chris was in pretty good shape today despite the low counts. His appetite is very much approved and he has gained back one pound.

Joke of the day -- Where do kings and queens get crowned? On the head.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, February 12, 2004 9:37 PM CST

Hi Everybuddy!

It was nearly a normal day for Chris and he almost made it through a full day of school. He didn't quite make it though since he had a dental appointment. The outcome was less than desirable; Dad learned that Chris is grinding his teeth and wearing them down. That makes them more vulnerable to cavities, and Chris has two new cavities. The dentist wants to extract one of the affected teeth. Chris also got some bad news from school: tomorrow is his beloved teacher's last day with her class. She has been promoted to an assistant principal in a new school across town. Chris and his class are heartbroken; he cried at bedtime about it. Tomorrow's scheduled Valentine party will be double as a farewell party, too. The temporary replacement teacher will be one of the music teachers (Chris thinks she hardly ever laughs).

Chris had some have some fun today at school, mostly focused around a new math project. Chris didn't explain it very well though so we're not sure what it is. He also took an AR test on the C.S. Lewis book, "Chronicles of Narnia: Prince Caspian" and got all the answers correct. Dad picked up Chris about forty-five minutes before the end of school in order to take him to the dental office. It was a short visit and Chris enjoys playing the games she has in the waiting area. Nonetheless, he fears the dental office more than he does the doctor's office. After visiting with the dentist, a very hungry Chris requested a brief stop at McDonalds for "dunch," where he had his usual chicken McNuggets meal. The guys then finally decided on a birthday gift for one of Chris' friends. Thanks to "Aunt" Cathy, Chris also bought a "Lord of the Rings" Monopoly game. He also used his own money to buy a heart shaped candy sampler for his teacher and later, he personally made her a heart shaped valentine (complete with his "trademark" happy face pin and a "Chris Card Company" logo on the back).

At home, Chris divided his time between playing a video game and reading. Once Mom got home, the guys took her shopping, then we went to a new "salad" restaurant. Chris was very pleased to see that they also had ham sandwiches.

Medically, Chris was in pretty good shape today, his appetite is doing better and even his athlete's foot problem shows improvement. We cannot help but think that some of this is blood count related. But who can tell where the blood counts really are; he also has a few petechiae on his chest.

Joke of the day (in honor of Genie the wonder dog) -- Doctor, Doctor I think I'm a dog. How long have you felt like this? Ever since I was a puppy.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, February 11, 2004 9:13 PM CST

Hi Everybuddy!

Chris got a break from any transfusions today but will probably need platelets on Friday. Chris' platelet level was a little above the transfusion point at 27. His other counts are looking much better: nearly normal. Chris was allowed to attend school. Chris' blood counts were: white blood cells rose to 5.1 (normal: 4.0 - 12.0), hemoglobin remained at 11.6 (normal: 11.5 - 14.5), platelets dropped to 27 (normal: 150 - 450), while ANC rose to 3200 (normal: 1400 - 7400). Chris had his last G-CSF shot twenty-four hours ago and since his counts increased, it has been stopped for this cycle.

Today's clinic visit didn't take long, but Chris had a sufficient time in the waiting room to be able to complete a Valentine's arts and crafts project for Mom. It was a necklace that he has already presented to her. It was sponsored by the Children's Cancer Center and run by a lady who volunteers to do holiday arts and crafts with the kids.

Once released from the clinic in the morning, the guys stopped by for a morning snack (Pringles again) and then on to school. We pretty much leave Chris' menu selection to himself unless it is skewed to "trending" food (like eating only pizza). Over the years, we seen that his body pretty much indicates what he should be eating (e.g., eating shrimp when his white blood counts are down) and he eats it. School was "ok" and everyone was "recovering" from the first part of the FCAT (standardized) written test.

After school, Chris requested a brief stop at McDonalds for "dunch" and he had his usual chicken McNuggets meal. The drive-thru employees almost ask if he wants the "usual" (but don't). They remember though. The guys headed home, where Chris divided his time between playing a video game and reading. He also did a few "good turns" for the neighbors and walked Genie. He and Dad also rode their bikes for a bit, but Chris was pretty tired. Some of the "tiredness" could be explained by him having received Benedryl at school to alleviate his itchy head. Dad thought that it sounded like a nerve problem (Chris had itchy hands and feet in church on Sunday, too) and the school nurse agreed. Benedryl stopped the itch.

Medically, Chris was in pretty good shape today and his appetite is doing better. His athlete's foot problem persists but is better than it has been.

Joke of the day -- Doctor, doctor, I can't stop fishing. Drop me a line when you're feeling better.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, February 10, 2004 8:53 PM CST

Hi Everybuddy!

Chris is happy to report that the writing portion of the standardized "FCAT" testing is now complete. The topic of today's essay was, "Tell us about people you like." He wrote about our family, including Genie. The fact that she is a dog isn't relevant to him. Chris didn't care for that test, but is actually waiting to do the math and reading portions in early March. This morning though, Chris was moved out of his classroom and into the media center for testing. Coincidentally, Dad was in there to meet with another committee member; that meeting had to be canceled when the room was allocated to FCAT testing. Of course, Chris had to giggle and wave "hi" to Dad before Dad got his things packed up to go. Chris was able to play a bit of soccer at school today as part of PE class. Even though he's been curious about maybe playing it someday, he didn't really like it all that much today. Chris just doesn't have the stamina for it. He's better in games that require short bursts of energy every once in a while.

After school, Dad took Chris to McDonalds before Chris, Dad, and the school network manager/jack-of-all-computer-trades went over to the University of South Florida for a meeting about developing software for the student volunteer program. Our friend Les took the meeting for the university and did well in giving the computer guy (and Dad) some start-up ideas. Chris sat in the room quietly doing his homework. Mom eventually came to rescue him by carting him off to "God school." There was no Cub Scout meeting tonight though.

A few days ago, we had purchased a "resupply" of candy for the church next to Chris' school; the minister hands it out to the kids who pass by his door. In the past, Chris has snuck it anonymously into the church office, but a while ago, the minister figured out that Chris was the culprit. Today, Chris brought the candy in and noticed that the minister's door was open. Dad gave him the "spy mission" of sneaking into the office (the minister appeared to be gone) and placing it on the seat of his wheel chair. Ha! Chris got busted. The minister was lurking about in the corner and said "Oh, hi Chris" as an unsuspecting Chris put the candy on the chair. The two had a good laugh at Chris' reaction. Probably because his chemotherapy seems to have ruined his sweet tooth, Chris has never taken any of the proffered candy or fruit, but he likes to resupply the minister with candy nonetheless.

Chris and Mom got home about the same time Dad got back from his meeting. We decided to have a pizza "picnic" in the master bedroom, where we watched the new movie, "The Lion King 1 1/2." There were a few very funny parts but it wasn't as good as we had hoped that it would be.

Chris has been getting Valentine's cards and e-mails. He thinks that they're great. He's trying to answer them too but it is slow going sometimes. Chris types by using the "hunt-and-peck" method, so it takes a very long time for him to write any message. For those of you who are sending him emails, he thanks you, and he might be able to send a response to you by the Fourth of July. He tried to call Grannylin and Granddad tonight, but apparently the timing wasn't right. We'll catch up with them soon. In the meantime, he enjoyed a nice long soak in the tub (lately he's been taking showers, but he wanted to sit for a bath tonight).

Medically, it was another pretty good day for Chris. He didn't have any problems but for the athlete's foot fungus.

Joke of the day -- What is the best way to speak to a monster? From a long way away.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, February 9, 2004 9:12 PM CST

Hi Everybuddy!

It was another long day at the clinic; Chris' platelet level fell below the transfusion point again. His other counts looked adequate though. Chris was allowed to attend school but ordered to return to the clinic afterwards in order to receive the platelets. This was his third transfusion in four days. Chris' blood counts were: white blood cells rose to 4.3 (normal: 4.0 - 12.0), hemoglobin was 11.6 (normal: 11.5 - 14.5 -- thanks to Saturday's blood transfusion), platelets dropped to 17 (normal: 150 - 450), while ANC rose to 2500 (normal: 1400 - 7400). Chris was still given clearance to begin another cycle of chemo using the drug Temodar once the doctor examined him after the platelet transfusion.

Today's visit wasn't that bad since Chris had some spectators during his morning session of Hacky-sack ball, and they thought that it was a cool game. One spectator was a little boy of about six while the others were a teenage girl and her father (they've seen the game before). Once released from the clinic in the morning, the guys stopped by for a morning snack (Chris hadn't eaten much breakfast) and then on to school. School was "ok." Chris received a sweet motivational letter from his teacher which basically told him that she felt that he was prepared and capable enough to do well on tomorrow's "FCAT" (standardized) written test.

After school, Chris requested a brief stop and McDonalds for "dunch" and he had his usual chicken McNuggets meal. Today while being transfused, Chris watched the movie, "Legally Blonde." He thought that it was very funny. He liked her dog, too. He didn't joke around with the nurses as much as he usually does but when he did, it was funny. He was playing "a little kid" today when one of his favorite nurses came in to access his mediport. She thought that it was hysterical. It reminded Dad of an old Jonathan Winters routine but Chris has never seen Jonathan Winters before. We take our laughs wherever we can find them.

The guys headed home and Chris played a video game for about an hour before Mom came home. There was a shopping problem that we had to correct, so we headed off to do that and eat dinner. Chris picked at his food. We also gave him some Zofran prior to administering his chemo for the evening. This particular drug is an oral chemo agent but can cause nausea and vomiting (like just about everything else he has to take).

Medically, Chris was in good shape today although his appetite is fair. His athlete's foot problem got the doctor's attention and she recommended a change in shoes. We'll do that possibly tomorrow.

Joke of the day -- Where did the pilgrims land when they came to America? On their feet.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, February 8, 2004 9:13 PM CST

Hi Everybuddy!

Today was a very mild day for Chris. "Rope Girl," a/k/a Genie, did her thing today by dropping her rope toy right on his chest and then proceeded to nibble on the rope. Since one of the ends of the rope was under his chin, it tickled Chris and woke him up. Pretty ingenious for a dog. Today, Chris was a little wacky at church, partly as a result of an apparent medical effect, and partly because he was feeling good. Chris experienced "itchy hands and feet," which drove him crazy for about 10 minutes, but that eventually passed. At another point, he bopped up and down with the high notes and low notes of the choir just because he felt like it. After Mass, a member of the choir who has been checking up on him for the past month or so, offered her help in any way that she can provide (e.g., baby-sitting or whatever). She has 16 grandchildren and thinks that Chris is cute. Chris was also quite pleased to see that the poster that he made for a Cub Scout religious award was still on display in the church, even a month later. It looks nice with an open door and lot of kids on it, and it says "Our church is a family."

Today was also the day of the big bike competition between Chris and Les. It was a quarter mile in length. Chris rode on his bicycle while Les rode (with his knees coming up pretty high) on Chris' new "go-cart" bike thingy (we're not really sure what to call it, but it is sturdy). Dad lengthened it so that Les' knees wouldn't hit his chin. It was a very close race with the lead changing on several occasions, but it ended in a tie. It was amazingly good fun and both seemed to enjoy the event. The guys next played a game of "Cranium Cadoo;" Les took first place in that event. Chris and Les then moved over to the Playstation 2 and raced in "The Simpson's Road Rage." Chris was the clear winner and it seemed that Les was on a Sunday drive. The two then did some moves with Chris' karate batons. Chris had a good time. Les called back later and remarked that Chris seemed to have a lot more energy and stamina since the other day when the two last competed. So that's a good sign, and no doubt those transfusions helped.

Chris spent a bit more of the afternoon playing some video games after Les and his wife departed. Soon, we all went out to do some shopping chores and then on to dinner. Chris mostly picked at his dinner (although he ate 3 slices of pizza at lunch), so we're not sure that he's making any progress in regaining the nearly four pounds that he lost over the past two weeks.

Medically, Chris did not have any problems with either stomach cramps and diarrhea. His energy and color seemed to be much better. Tomorrow, he is scheduled to start another cycle of chemotherapy, this time using the drug Temodar. He really doesn't get much of a break.

Joke of the day -- What do you get if you cross a skunk with a bear? Winnie the Pooh.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, February 7, 2004 10:16 PM CST

Hi Everybuddy!

It was a long day for Chris (a little over eight hours) as he spent most of it either waiting for, or receiving, red blood cells at the hospital. He needed the blood, but couldn't get it though the clinic system on Friday due to the length of time needed for preparation and the transfusion itself. Thus he had to be admitted for a "day" to the hospital to receive the transfusion. Dad learned this morning that Chris couldn't be admitted until after 11:00 am. When they got there (despite heavy traffic due to Tampa's annual Gasparilla "pirate invasion" festival), they had to wait thirty minutes to get through registration. When they got to the assigned room, they waited an additional four hours before the blood even arrived (the transfusion itself takes about three hours). We didn't get to leave the hospital until nearly 9:00 PM. It seems that the lab had the blood ready but failed to log that fact in the computer; that was what apparently caused the nearly three hour delay. What a day!

Not all of the day was boring though. Not too long after the guys arrived at the hospital room, a nurse brought a thirteen year-old patient over to visit because he was bored to tears. He and Chris ended up playing Uno until it was time for Chris to have some lunch. Just after lunch, Chris' friend Ashley arrived (her sister is in-patient for a fever). Then Chris, Ashley and Dad played Uno for a while.

After a while, the two kids decided to try the game Monopoly. It was a unique game to say the least, lasting nearly three hours. Every time Chris or Ashley would get into financial trouble, they'd either give each other money or discounts on the their rents. Ashley actually began that process, which made for a different kind of game. Everyone had a good time though, at least up until Ashley had to leave. Chris was happy to bump into Christina and Ashley at the hospital since he had valentines for them. Mom finally finished with her Army Reserve duties for the day just in time to bring dinner to the guys and hang out until Chris was discharged. We caught up with many of the nurses who had faithfully cared for Chris for almost five years, so it was a nice day in that regards. Chris brought them three dozen bakery cookies, so they were happy, too.

Medically, Chris did much better today and had only two bouts of diarrhea toward the end of the day. He was tired after his transfusion, but managed one "dog pile" after we got home. He seems to be getting slightly better but still is experiencing stomach cramps and diarrhea.

Joke of the day -- Why does a flamingo stand on one leg? Because it would fall over if it lifted the other one.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, February 6, 2004 9:57 PM CST

Hi Everybuddy!

Chris spent a lot of his day off from school in an interesting way: getting a platelet transfusion. If that wasn't enough fun, he and Dad learned that Chris also needs a red blood transfusion. So he and Dad will have to go to the hospital tomorrow because the clinic will not be open for the transfusion. After Chris made a halfhearted attempt at breakfast, the guys went to the Tampa Clinic for a regular blood test and the platelet transfusion. Chris' blood counts were: white blood cells rose to 2.8 (normal: 4.0 - 12.0), hemoglobin dropped to 7.8 (normal: 11.5 - 14.5), platelets dropped to 9 (normal: 150 - 450), while ANC rose to 1400 (normal: 1400 - 7400). Chris will be receiving a red blood transfusion early tomorrow morning at the hospital; so much for going to the State Fair.

Today wasn't all bad though. When the guys left the clinic, they went to see the new movie, "Catch that Kid." It was a fair kids movie with a lot of neat special effects, but Chris clearly enjoyed it more than Dad did. Once the movie was over, the guys walked about the mall. Dad made up a good reason to do so: to find an ice bucket, which wasn't exactly a high priority, but it did get Chris out and about. Surprisingly, Chris stumbled onto a clearance sale of a very nice ice bucket for a little over five dollars. So much for make-believe reasons to get him to walk the mall. He was quite pleased, especially since he also wound up with a new book by the author of Artemis Fowl.

The guys headed home and Chris went back into the video game world. Sometimes it is almost as if he leaves the room and goes right into the game. (That's another reason why we need to get him out and about.) When Mom got home, we went to the place where Dad had attended a meeting last night since he thought that he had misplaced something there; we decided to stay for dinner. It is a really nice family oriented sports bar kind of restaurant. As we were leaving, Chris stumbled into several girls from his class. Their baseball team was coming out of the ice cream store next door, so that was a fun surprise.

Today, we learned that a young girl who had been abducted from nearby Sarasota had in fact been murdered. Dad spoke with Chris about the incident and reminded him of all the personal security lessons that his karate instructors had taught him. Chris was sorry for the girl and her family, and managed to recall what he had been taught. Mom had a similar discussion with him during nighttime "stuff."

Medically, Chris seems to be getting slightly better but still is experiencing stomach cramps and diarrhea. Amazingly, he seemed to have more energy today, even though his hemoglobin was below the transfusion point. We're glad that we didn't spread out the clinic visits.

Joke of the day -- What are the small rivers that run into the Nile? The juve-niles.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, February 5, 2004 9:51 PM CST

Hi Everybuddy!

Chris returned to the Tampa clinic, submitted to another blood test, then learned that (thanks to today's and yesterday's G-CSF shots) his counts were again high enough to allow him to attend school today. However, it was not clear sailing. Chris still had to contend with digestive cramping and diarrhea problems, although perhaps not so bad as the past couple of days. He did not have vomiting problems, but felt a little nauseated this evening. He was doubled over in the bathroom tonight, but at least he wasn't in tears, as he has been over the past couple of days. Chris' blood counts were: white blood cells rose to 2.4 (normal: 4.0 - 12.0), hemoglobin dropped to 8.6 (normal: 11.5 - 14.5), platelets dropped to 17 (normal: 150 - 450), while ANC rose to 1200 (normal: 1400 - 7400). Chris will be receiving a platelet transfusion early tomorrow morning; there were some administrative problems that precluded one today. He'll still have to get up early tomorrow morning to go to the clinic even though it is a "no school" day.

After the clinic visit, Chris asked for something to eat. That's good because he's continued to lose weight, so Dad detoured to Burger King for some cinnamon buns. After Chris finished them, he felt rather well, so the guys headed off to school. School was fun; today included a peer mediation practice session (which he enjoys). Chris said that he ate a taco for lunch but that wasn't overly impressed with it. Once home, Chris said that he was too tired to go bike riding, so he pretty much played a video game while Dad worked on his computer so he could have e-mail access again.

It was a Mom and Son night for dinner since Dad had another presentation to make about his student volunteer program idea. Chris asked for some popcorn chicken from KFC for dinner. Willing to go along with anything that Chris wants to eat at this point (particularly since it meant protein), Mom agreed. Chris ate about 2/3rds of the small box, which is a lot considering the poor condition of his digestive tract recently.

Medically, Chris seems to be getting slightly better but still is experiencing stomach cramps and diarrhea. We have to take a stool sample as the medical staff want to ensure that it isn't an infection brought on by his weakened immune system (as in too weak to fight off the usual "bugs" that everyone has in their bodies normally every day). Chris did not eat particularly well for most of the day but it was better than yesterday. He has lost one and a half kilograms since the beginning of this cycle.

Joke of the day -- What did the rope say when the cowpoke asked if it was feeling well? I'm "A frayed" knot.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, February 4, 2004 9:52 PM CST

Hi Everybuddy!

Chris's day seemed to have started easier this morning, but when the stomach cramps hit, they hit him hard. He is still having pretty significant diarrhea problems too. Still, Chris thought that today was a generally a better day (relatively speaking). Mom and Dad did not necessarily agree. The biggest news was that, for the first time in over a year, Chris' ANC dropped so low that he was not to attend school. He was heartbroken (yeah, right). He also got his first G-CSF shot as soon as he and Dad returned home from the clinic. His counts were: white blood cells dropped to 1.4 (normal: 4.0 - 12.0), hemoglobin dropped to 9.2 (normal: 11.5 - 14.5), platelets were 29 (normal: 150 - 450), while ANC dropped to 400 (normal: 1400 - 7400). The magic number for ANC (and therefore school attendance) is 500. Plans are in place to transfuse platelets on Friday, since that will likely be necessary. Interestingly, on Monday, one of the nurses tried to persuade Dad not to come to clinic again until Friday because Monday's counts were relatively decent. Trusting his "combat intuition," Dad didn't like that recommendation; it's a good thing this time, too. Dad also discussed with medical personnel the upcoming medical testing schedule, which will probably occur in the third week in March or so. Coincidentally, one of the doctors at Memorial Sloan-Kettering in New York wrote to us this evening, requesting an update on Chris' treatment and inviting him back up to NY for testing.

After the clinic visit, Chris donned a surgical mask Chris before the guys stopped by the pharmacy in order to pick up some more medicine for Chris. They also picked up Valentines for his classmates and some of his friends. They then went to pick up Chris' computer, where the employees joked with him about robbing the place because he was masked. Both places were very quiet and the guys retreated to home. While the guys were doing that, Mom called the school to let Chris' teacher know that he wasn't going to be coming in. Later Dad called the homebound teacher to let her know that Chris may have to switch to that program temporarily, depending upon how low and how long his counts remain. We don't really think that it will be necessary, but who can ever tell. Our friend Les also came over this evening for a meeting about Dad's Student Volunteer Corps project, then hung around to play with Chris for a little bit after the meeting. Les noticed that Chris tires quicker and is not as strong when he plays. We are thinking about asking the doctor about whether it might be appropriate to lengthen the recovery times between chemo cycles. Chris appears to be wearing out; that much toxic stuff can't be doing his body good.

Chris spent most of his afternoon playing games until Mom came home to relieve Dad so he could attend the School Advisory Council as a presenter. While there, Dad picked up Chris' homework. Chris did the homework as soon as Dad got home because there were people coming to our house for a meeting regarding the Student Volunteer Program. (Mom attended that meeting, too.) While waiting for everyone to arrive, Chris and Mom played his new "Lord of the Rings" action figure game. Occasionally, Genie jumped up on the bed on which they were playing, where she dropped her rope toy. Maybe she was trying to introduce "the fog of war." She definitely wanted her share of the attention. Chris tried to give it to her, but every time he tried to exert much energy, his stomach began to cramp. (Physical activity launches the cramps and is one reason that Chris has been shying away from karate lately.) He was definitely much better off in a quiet mode today.

After he and Les played a while and Les left, Chris got some pretty significant cramps this evening. In fact, they were so bad that Chris asked if we could call the doctor (a rare request for him). Chris had already taken (within about 13 hours) as much Imodium as was permitted in a 24 hour period. Because the cramps weren't bad enough to require an emergency visit to the hospital, and since we didn't have any appropriate stronger prescription medication (like codeine or morphine) that might have helped to slow the digestive tract at home, the doctor told us to just give him some Benedryl, which at a minimum might help settle the stomach (but not the diarrhea) and hopefully help him sleep. So far, so good; he's asleep right now. Chris did not eat well at all today. He has also dropped more weight and was well below his usual activity level.

Joke of the day -- Why did the computer squeak? Someone stepped on the mouse.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, February 3, 2004 9:11 PM CST

Hi Everybuddy!

Chris has a slow start this morning, and once again was plagued by nausea, vomiting, stomach cramps, and vomiting. The good news is that he didn't had any more such problems throughout the day, at least not until his stomach audibly started churning at bedtime. Chris actually got to spend an entire day of school for a change.

Today was "terrible Tuesday," when Chris had both religious education class and his Cub Scouts den meeting this evening. He had actually finished his homework at school so he took the time after school for a little nap. Chris was able to connect with his friend Greg at "God school," but Greg couldn't make it to the Cub Scout meeting tonight. Scouts was a lot of fun tonight since the boys are now working on their craftsman pin. Each scout had to put together a message board made from a strip of wood and seven clothes pins. They had to cut the wood, drill holes, sand it and the glue on the clothes pins. Then they made a luggage tag using a handheld hole punch to make the holes, then sew together the sides with vinyl thread and insert plastic cover. They also received a kit with supplies to make a camouflaged coat hangar.

Joke of the day -- Doctor, doctor, I can't stop trembling. I'll be with you in a couple of shakes.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, February 2, 2004 10:23 PM CST

Hi Everybuddy!

Chris had a very rough start this morning. He ended up eating only one-tenth of his cinnamon apple. He was plagued by cramps, diarrhea, and vomiting. Despite it all, he made it to the clinic on time. The medical staff quickly saw that Chris wasn't feeling well as he went through his "clinic stuff." One nurse suggested that he go back home (Chris' eyes lit up). Dad told her that he wasn't ready to make that call yet since Chris' problems are related to the adverse effects of chemo, particularly in the morning, and not with "illness" per se. A routine blood test was performed and today's counts were: white blood cells dropped to 1.7 (normal: 4.0 - 12.0), hemoglobin rose to 10.1 (normal: 11.5 - 14.5), platelets were 61 (normal: 150 - 450; probably that "high" due to Fridays transfusion), while ANC held at 700 (normal: 1400 - 7400).

After the clinic visit and a "mopey" walk to the car, Chris and Dad stopped at a drugstore, where Dad had Chris pick out a snack. He eventually picked a small can of Pringles potato chips. He and Dad then went out to our camper/van. There they finished watching the movie, "Who Framed Roger Rabbit" and Dad had Chris eat his potato chips. One can of potato chips and twenty minutes later, Chris said that he felt well enough to go to school. It might be an unorthodox approach, but we never know what's going to get things going; it worked this time. School went well and Chris didn't have any further problems.

After school, Chris and Dad then went back to the clinic. This time it was to drop off some poetry, songs, and some artwork that Chris had created. The songs are about his experiences, presented in a funny context, while the artwork was a picture that Chris drew the Corporate Angels Network Christmas card last year. These items are to be displayed at Tampa's Cancer Survivors Plaza, which is slated to be officially dedicated soon.

Chris was happy when he saw our mail today: among other things, it included our invitation to go to family camp at Boggy Creek, the camp for cancer kids that Chris has attended each of the past couple of summers. He hopes that a few of his friends (and their families) will be there, too.

Chris also received his intermediate report for this grading period. All of his grades have dropped, so we'll visit with his teacher soon. It is a miracle that he stays motivated to do as well as he does, but we're going to have to keep him focused on learning. We understand that his treatment schedule and the accompanying fatigue are probably affecting his schoolwork, but Chris has already demonstrated that he is bright enough to keep up on his own, if we can keep him from focused. He is concerned about the upcoming standardized testing cycle.

Once home, Chris and Dad went on a short bicycle ride. It was very short and Chris got very tired. Dad is going to ask whether an EKG during the next testing cycle might not be appropriate. Although such a heart test is standard on an annual basis for post-transplant kids, that doesn't factor in on a kid being in near-constant chemotherapy since transplant (actually, since 1999). Once Chris finished his homework, he played a videogame for a while. We also had a mini-dogpile but Chris and Dad were having to pace themselves (although Dad is feeling much better already). Wrestling around too much makes Chris' tummy churn, which definitely interferes with the play mode.

Chris spoke with Grandma and Grandpa. They had some really good knock-knock jokes for him but Chris forgot them while he was trying to tell them to Mom later
this evening. Our friend Les also came by to visit; he and Chris "negotiated" on the rules for the upcoming bike race. Since Chris' computer is down, he and Dad went through Chris' e-mail tonight and answered his mail (which he thought was too cool).

Medically, it was a rough starting day with a less than stellar ending. He was troubled by stomach cramps and diarrhea throughout the day except for when he was at school. He has also dropped one kilogram already.

Joke of the day -- Two astronauts went to a bar on the moon, but they left after a few minutes? You see, it had no atmosphere.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, February 1, 2004 9:00 PM CST

Hi Everybuddy!

Chris had another rough morning. Today he felt so poorly that he didn't go to church -- today was even "Scout Sunday," meaning he was supposed to sit with his friends while in uniform. But, Chris was suffering from stomach cramps that had him doubled over, along with diarrhea and nausea. It took a while this morning for him to get on top of all of that, despite his medicines designed to combat this type of situation. Eventually, he ended up feeling well enough to play a video game while Dad watched (sort of, he was ill also, but obviously not from chemo). Chris was very thoughtful concerning Dad and was very quiet. Things were so messed up because of people not feeling well that we didn't even have a dog pile today.

As time went on, which frequently happens in this post-chemo phase, Chris felt better (there seems to be sometime that makes mornings especially tough -- the evenings can be tough too, like tonight, but not usually as bad as the mornings). Later in the afternoon, he managed to get out for a visit at his friend Greg's home. There, the boys played video games, went bike riding and played with Greg's dog, Sandy.

Joke of the day -- Friar Tuck was a monk, so why did he get involved in a life of crime? It was his habit.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, January 31, 2004 9:16 PM CST

Hi Everybuddy!

Well, the poor kid has had a difficult day, but he's coped with it, as usual. Chris awoke on his own this morning because of his stomach cramps. Not long afterwards, he snuck into Mom and Dad's room, where he snuggled and pretended that he was asleep so that Genie could "wake" him up. That turned into a mini-dogpile that spilled over into the hallway (because Genie's rope toy went out in that direction). There, Chris and Genie had an accidental collision which resulted in a new bump on his head. Just as soon as he recovered from that, Chris made a beeline for the bathroom, where he vomited (related to the chemo, not the head bump). Chris asked for a Zofran, and a few minutes later asked for a waffle (wouldn't everyone under such circumstances?). We let him have breakfast in bed while he watched TV, which he thought was cool.

Chris spent a fair amount of the morning playing a video game called "Dark Cloud II." It is pretty sophisticated for a ten year-old, but he is working his way through the game pretty readily. The computer in his room is down as a result of an unrecoverable fault, so it is headed for the shop on Monday. After that, Dad will start from scratch in terms of trying to get it operational again. Chris, however, likes all the e-mails that have been heading his way. Thanks!

We were hoping to meet with our friend Les today (he and Chris have planned a bike race) but it didn't happen due to unforeseeable circumstances (Les is a rugby coach and one of his players was injured). Chris fully understood that Les needed to be elsewhere, but Chris knew what else was in store for him: furniture shopping. After nearly twenty years of service, several long-term storages, and at least a dozen moves, we decided to retire the furniture in our den. We went to a lot of stores, where Chris (who claimed to have Genie's proxy vote) commented on every sofa suite. He picked his favorite fairly early one. After lots of sofa testings, Mom and Dad came down to two suites with which they would be happy, one of which was Chris' favorite. Chris maintained a tremendous lobbying effort and did impart some influence on the decision to buy his favorite, which he calls "Super Sofa." It is comfortable and we hope that it (the sofa, loveseat and recliner) will be able to withstand the anticipated onslaughts of boys and dogs. It'll be a while before it gets delivered though, since it needs to be manufactured for us.

This is not to say, however, that all of the shopping was focused on sofas. Chris was on the lookout for a new "Lord of the Rings" game that Grandpa and Grandma wanted to get him. He thought that it might be at the local comic book store near the "salad restaurant" so he recommended the place for lunch. We saw through that but it did make sense so we went. While in the "salad restaurant," a family walked past our table as they headed toward the door. Their 2 or so year old daughter toddled right up to Chris as if she had known him forever (they had never met before) and wanted to just stay with him. She smiled and cooed at Chris, and when her parents tried to move her along, she swatted them away. Finally, her father picked her up, and she screamed as she reached out for Chris. He always was a "girl magnet." In any event, we eventually found the game at a hobby store at the end of the furniture quest for furniture so his day had a happy ending. Mom picked a movie to us to watch this evening: Bill Murray's "Groundhog Day" (which is actually on Monday). Chris finally figured out the humor of the groundhog predicting the end of winter but it took a while.

Medically, it was another tough day but Chris got through it. He didn't ask to curtail the shopping for the sofa, although there were moments when it was clear that he was wearing down. Most of the time he felt fine, but at other times he asked that we walk slower. Sometimes we'd hover around a particular sofa suite so that Chris could relax a bit. At various times throughout the day, Chris contended with stomach cramps, nausea, diarrhea, and vomiting. Most of this was manageable thanks especially to Imodium. Chris also has one "raccoon eye" (it almost looks like he has a black eye but this is caused by the low level of platelets). We could tell that he was sometimes in pain or otherwise feeling "blah," and just darn tired of it all, but we have to admire his ability to keep it in perspective and push on.

Joke of the day -- How can you go without sleep for seven days and not be tired? Sleep at night.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, January 30, 2004 10:22 PM CST

Hi Everybuddy!

Genie got Chris good this morning: he was sleeping on his back. She jumped up and gave him a kiss on the nose. That one got him going. Chris didn't make it to school at all today since he and Dad spent the whole day at the clinic. Chris needed a platelet transfusion. Between that and a late arriving pharmacist, the whole day was spent at the clinic. The medical staff did a routine blood test today and administered his last dose of Irinotecan for this cycle. Today's counts were: white blood cells dropped to 1.8 (normal: 4.0 - 12.0), hemoglobin rose to 9.1 (normal: 11.5 - 14.5), platelets dropped to 17 (normal: 150 - 450), while ANC held at 800 (normal: 1400 - 7400). The depressed platelet number won him an invitation to a transfusion.

Chris performed one good deed at the clinic: he helped explain to a Hispanic family, and in particular to a young boy, the value of attending summer camp at Boggy Creek. It was a weird hookup since there were many language problems but everyone seemed to work through them. Chris was again a "lone ranger" at the clinic for some reason. There are normally a few people moving through the transfusion room, but he pretty much had it to himself today. He watched two James Bond movies (although he slept through a great deal of the second one). They were "Goldeneye" and "The Man with the Golden Gun." Chris' two infusions went without incident or adverse effects. By the time the guys were finished, Chris would have only had about 30 minutes of class had he gone back to school (a replay of yesterday). This time though, he hadn't even had lunch yet. He asked for (and got) chicken McNuggets on the way home.

Compared to yesterday, Chris was pretty tame once home. He mostly played video games and could only get motivated for one dog pile. He didn't even get to go bike riding. He did, however, get a phone call from Les. The two exchanged the usual bravado as to who was going to win the upcoming bike race. Chris even offered Les the use of his new "bike." It may prove to be a bit too small for Les. He also spoke with Grandma and Grandpa; for some reason he had difficulty telling them about some school events. He wasn't quiet, just not his usual motor-mouth self though.

Medically, it was another pretty good day, although Chris did have his first bout of diarrhea. As had oft been the case, his Irinotecan side-effects started on Friday. Chris held his weight.

Joke of the day -- Two astronauts went to a bar on the moon, but they left after a few minutes? You see, it had no atmosphere.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, January 29, 2004 9:04 PM CST

Hi Everybuddy!

Chris is developing a new morning routine. Time permitting, he is adding "check his e-mail" to the list of "morning stuff." Slowly but surely, his cancer friends are beginning to send him stuff. These kids are normally pretty computer literate since it is often their primary gateway to the outside world during very heavy treatment periods. As a matter of fact, Chris bumped into two of his friends, Christina and her sister Ashley, on the way into the Tampa clinic. Chris had a late start this morning since the clinic's pharmacist had a meeting somewhere else until 10:00 a.m. Without his presence, there would be no chemo for Chris (or anyone else, for that matter). The two girls were as fun as ever and they made plans to link up with Chris online sometime in the near future.

The medical staff decided to do a routine blood test today along with his fourth dose of Irinotecan. Today's counts were: white blood cells held at 2.0 (normal: 4.0 - 12.0), hemoglobin dropped significantly to 8.4 (normal: 11.5 - 14.5), platelets rose to 29 (normal: 150 - 450), while ANC dropped to 800 (normal: 1400 - 7400). Since Chris had dropped 1.5 in hemoglobin overnight, the medical folks decided to do a "type and hold" in case Chris needs red blood tomorrow. If he needs platelets too, then there's a good chance that Chris (and Dad) will be at the clinic all day. Dad passed on to the medical staff Chris' standardized school testing schedule so that they don't inadvertently schedule any upcoming scans at the same time. One of his tests will be on February 10th, while several others could be on March 1, 2, 3, 8, 9, or 10.

Chris was the "lone ranger" at the clinic since most of the kids had come and gone before the guys got there today. One of his old roommates, Roy, was there and had fun watching Chris and Dad play hacky-sack ball in the waiting room. Chris read his new book, a parody on Harry Potter, and watched the movie "Matilda," which is one of his favorites. He was also quite happy to receive the application packet for summer camp at Boggy Creek again. This will be his third year, if he can attend. Chris' infusion went without incident or side-effects. By the time the guys were finished, Chris would have only had about 30 minutes of class if he had gone back to school. Because Chris hadn't eaten lunch yet, the guys headed home, where hungry Chris ate one hot dog and a grilled cheese sandwich.

Once home, they walked the dog and then went on a bike ride. During the last conversation that Chris had with Les, they decided to have a bike race. Chris is now "in training." Today was a pretty active dog day: the guys and Genie had three full-fledge, no holds barred "dog piles" and two rope keep-away games. For someone with such low hemoglobin, Chris did well; he tired just about the same time that Genie was wearing out. Chris also made quick work of his reading homework, then he and Dad spent some time working on some Webelos tasks for the communications pin. It involved sending some e-mails, "surfing" the Internet, and creating, saving, and printing a document (he needs only to do something with a secret code -- right up his alley). So, between today's work and the work he did while creating his timeline project, Chris is becoming quite familiar with his computer. He handed in and posted his timeline at school today. He commented that it looked "cooler" on the wall.

Medically, it was another pretty good day, although Chris did have one stomach cramp. His Irinotecan side-effects normally start kicking in on Fridays though. His athlete's foot is looking much better. Somehow, even with all of the extra meals, Chris is losing weight already and has dropped one kilogram in three days.

Joke of the day -- Why did the boy become an astronaut? Because he was no earthly good.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, January 28, 2004 9:11 PM CST

Hi Everybuddy!

"Rope Girl" tried to do her thing today to awaken Chris but it just didn't working. Dad and dog finally got him going when Genie walked around on the bed and nibbled on his ear. She gave him a nice sloppy kiss on his nose that got his attention finally. Today at the clinic there was another routine blood test and the third dose of Irinotecan. Today's counts were: white blood cells dropped to 2.0 (normal: 4.0 - 12.0), hemoglobin rose to 9.9 (normal: 11.5 - 14.5), platelets dropped to 27 (normal: 150 - 450), while the ANC rose to 1000 (normal: 1400 - 7400). The doctor said that Chris could go to school.

Chris was pretty much by himself as a patient today; only towards the end of the clinic visit did he bump into a teenage girl who is a Chris fan. They spoke about their adventures in the Florida Aquarium from last weekend. Chris' infusion went without incident or side-effects; he read and listened to the movie "Pirates of the Caribbean." He also asked to stop by McDonalds on the way to school. He has already dropped a half of a kilogram of weight. After Dad dropped Chris off at school, he stayed there since he had a presentation to make with the PTA about the student volunteer program. It ended just moments before it was time to pick up Chris after school. When they linked up, Chris again asked for something to eat so back to McDonalds they went. At dinner, he had a grilled cheese sandwich and pineapple so his appetite is weird but at least he's eating.

The guys made one stop at a hardware store and then went home to have a little goof-off time with the dog. Chris took her through a "dog-pile" and then they played keep away with her rope toy. She is good so she kept it more often than the guys did.

This afternoon, Chris spent most of his time either doing math homework or finishing up his timeline. Dad used this project to coach him in planning and how to master his new computer. He did well and has learned quite a bit. The timeline project reaffirmed just how much Chris has done in his ten years -- quite a bit. Chris wanted to add pictures so there are plenty of them, too.

This evening, Chris spoke with our friend Les. Although Mom and Dad are a little unclear on the specifics, the two of them have made arrangements for a bicycle competition. It should be pretty interesting to watch Les ride Chris' new "bike."

Medically, it was a pretty good day, but he has already started to lose weight and is tiring more frequently. He managed to retain his meals and only had a brief instance of nausea.

Joke of the day -- Where do astronauts leave their spaceships? At parking meteors.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, January 27, 2004 9:14 PM CST

Hi Everybuddy!

Chris was a tired puppy this morning and it took some effort by the wakeup team (Dad and Genie) to get him going. The chemo just seems to wear him down. Dad's been asking about the possibility of stretching it out a bit instead of every other week. Chris didn't have a blood test today but he returned to the clinic anyway in order to get his second course of Irinotecan. In fact, today was really a "medical" day for the entire family. Chris went to the clinic with Mom because Dad had an early morning dental appointment. As soon as that was over, he came and relieved Mom, who then went on to her office -- that is until her afternoon dental appointment. Because that lasted longer than expected (she was in the waiting room for a while), so Chris accompanied Dad and Genie, who had an appointment at the vet's office for a regular checkup. Genie wound up with two shots and something that was put in her nose through a small syringe. Chris didn't hang around for the needle art; he returned to the waiting room to read a book. All-in-all, everybody turned out to be good patients to include a reasonable calm Genie.

Chris broke Mom into the usual clinic visit routine, including introducing her into the waiting room variety of the sport of hacky-sack ball. They also played Uno and watched the movie "Honey, We Shrunk Ourselves." Chris lost his breakfast just as soon as he arrived at the clinic. He felt better immediately afterwards (which is when he played hacky-sack ball), but the chemo brought on the nausea again. He had a barf bin near by during his infusion, but he managed to keep things under control, despite his seasick appearance. Upon completing the chemo, Chris still felt nauseous so Dad (upon medical advice) supplemented the previously administered Zofran with Benedryl (also good for nausea) but it made him a bit sleepy. Dad informed Chris' teacher upon arrival at school, who is very supportive of Chris. He napped a bit after lunch. Although he initially thought about stopping at McDonalds on the way to school, he decided to go straight to school instead. Chris ate a small lunch. By the time Dad picked him up after school and spoke with a few people about the volunteer program, Chris was starving. This time he asked for and went to McDonalds (thanks Jean for the coupons).

Once home, Chris dove into his homework as if it was the usual terrible Tuesday. It wasn't; there was no Cub Scouts nor religious education classes today. It was just as well because it's a good study habit, and besides, Genie has to get to the vet's office. Chris and Dad also did a little more work on Chris' timeline project; they inserted some pictures today. He really has done quite a bit in ten years. Mom started hunting for baby pictures to add to his timeline, too.

Medically, it was a fair day save for the nausea and vomiting. Over the course of the day, Chris ate reasonably well enough that his weight should stay stable. The significant information from Chris' most recent "full panel" test are the following: ALT 71 (normal: 12 - 34), AST 58 (normal: 22 - 44), and BUN/CRE Ratio 18 (normal: 15 - 24).

Joke of the day -- How did Noah see in the dark? By ark-lights and flood-lights.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, January 26, 2004 9:43 PM CST

Hi Everybuddy!

"Rope Girl" (aka Genie) did her thing this morning by awakening Chris by dropping her rope on his rear end. He had quite a laugh. The guys headed for the Tampa clinic for a routine blood test and to start yet another cycle of Irinotecan. Today's counts were: white blood cells rose to 2.2 (normal: 4.0 - 12.0), hemoglobin dropped to 9.4 (normal: 11.5 - 14.5), platelets were 38 (normal: 150 - 450), while the ANC rose to 900 (normal: 1400 - 7400). The doctor said that Chris could go to school. She also wants us to try supplementing the tea tree oil that we use on Chris' athlete's foot problem with a prescription ointment that we'll get tomorrow. Chris' right foot continues looking like it is in poor shape. Dad and the doctor continued to speak about further treatments possibilities as well as an alternative drug to supplement the Irinotecan.

Chris saw his friend, Christina, at the clinic this morning, but just barely. Coincidentally, she was wearing a T-shirt from Six Flags as was Chris. They didn't have the opportunity to speak to each other though. The chemo infusion went well. Chris passed his time either reading a new Hardy Boys book or watching the movie, "Honey, I Shrunk the Kids." He was also able to distract a little girl who was in pain by getting her to watch the movie after her parents had tried and failed. That was his good deed for the day.

Chris went straight to school just in time for some fine dining there. The best part of school today was the students making a plaster mold of their faces. Chris even had a little plaster left on some of the few hairs on his forehead. After school, Chris very patiently sat through a meeting between Dad and a first grade teacher concerning the student volunteer program. Chris helps ensure all the graphic volunteer task instructions are kept "kid friendly" and accurate.

Once home, Chris worked on his homework, then he and Dad worked on another project that's due on Friday: a timeline of Chris' life. Dad is teaching him how to use the PowerPoint program to make the timeline. Chris is adding pictures of significant things along his timeline path. So far, it looks like a pretty cool project.

Medically, it was a good day and Chris has even gained his weight back. The lowering hemoglobin is a concern, but not too much of one as of yet. His right foot has a nasty outbreak of athlete's foot now. Even still, it looks better than we've seen it in the not-so-distant-past.

Joke of the day -- Did you hear about the idiot who sat up all night wondering where the sun had gone? The next morning, it dawned on him.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, January 25, 2004 8:59 PM CST

Hi Everybuddy!

Compared to yesterday, today was relatively quiet for Chris. When Dad went to wake him up before church, he found Chris sitting in the den playing a game. Last night, Chris thought that he'd sleep until noon today. Ha! Since he was already up, totally awake, and had been looking around the kitchen, and doesn't usually have much of a sweet tooth, he asked to have a brownie for breakfast. Dad thought that it was a unique request so he caved in and let him have one. Chris wolfed it down and all of his medicines, then got ready for church.

Mass was nice today. Chris sat next to a little girl who was celebrating her 6th birthday. He also really liked the plain-speaking priest, who is visiting from California to lead a parish retreat. When Mom and Chris opened the garage door upon returning home, Chris found that Dad had put all of the new lights and the bell on his new "bike." Chris just "had" to test-drive the thing right away. During lunch, we received a super surprise: a phone call from Lisa in Germany. She wished Chris a belated birthday, then filled us in as to what's happening with family members in Germany. Chris was very happy to hear from her (as were Mom and Dad).

Chris then went about his usual Sunday afternoon video-gaming, testing out his newly acquired games. After a bit though, Chris began feeling a little lonely (Mom was working in the office, while Dad was working on Chris' computer). He asked if Greg could come over for a visit. He could, so Chris and Mom went to pick him up. Since the weather was so unbelievably beautiful, Chris and Greg spent a great deal of their time together playing outside. They were all over the place doing "spy stuff" and putting Chris' two bikes into service. The new "bike" got quite a workout as they decided to try and be stuntmen, driving it down into a drainage ditch. It's fairly mild, but still not a smart idea, in part because it is located next to the road. Dad put a nix to that when he saw what was happening (although it did look like fun). As usual, the two guys did a little bit of everything today again.

Medically, Chris had a good day and had no side-effect related problems. He continues to have some bruises that refuse to go away though. In addition, the athlete's foot problem has been clear on his left foot for close to a month now, but it continues to rage on his right foot. At least the skin is no longer cracked open, and there is the beginning stages of a bit of healing there. He's having quite a time trying to get rid of it; perhaps the persistently low blood counts are accounting for the long treatment.

Joke of the day -- (thanks Uncle Tom) - What goes ha, ha, ha, plop? Someone laughing their head off.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, January 24, 2004 8:52 PM CST

Hi Everybuddy!

It has been a very busy day for Chris. It started at the usual school day wake up time because he was scheduled to attend a special "behind the scenes" tour at the Florida Aquarium. It was jointly sponsored by the aquarium and the local childrens cancer foundation. Although he was initially concerned that he might not know anybody at this "kids only" event, Chris found several of his hospital/clinic friends. The event was well attended by a lot of "cancer kids" and their siblings. Chris participated in everything except for petting a baby alligator (he cannot handle reptiles due to the infection risk)and he did not care for watching the dissection of a squid (good choice). Reports from the staff (parents could not attend because it was designed to provide the kids with a break from their parents -- and perhaps vice versa) were that Chris was his usual gregarious self shortly after he arrived. When a diver who was in one of the large tanks explained (through a microphone system) that humans touching coral reefs cause the coral to die, Chris asked the diver whether the reefs die when fish bump into them. That question caused a lot of head nodding amongst the other children, who upon thinking about it, thought it was a very good question. The answer, by the way, is because fish and coral are designed for a symbiotic relationship. But the true Chris came alive when, in the aquarium's classroom, which doubled as this activity's staging area, he went "on stage" telling jokes before the shark show. He wasn't the only one to do that, but he was the only one who was asked to come back for an encore. Mom and Dad feel like they missed quite a show, but we're happy that he obviously made some people smile today.

Mom returned to the aquarium to pick up Chris at 1:30, after the event (and its included pizza party at the end) was over. They had to hurry home before Chris' guests arrived; today was his delayed birthday celebration. Even though Chris had just come from the bathroom when Mom arrived at the aquarium, by the time they drove the 20 minute drive home, Chris felt like he was ready to explode. Before Mom could even get the garage door completely open, much less get the car parked, Chris dove out of the car and threatened to run over anything in his path on the way to the bathroom.

Once that business was concluded, he was fine for the rest of the day. His friends arrived, and they immediately played lots of both indoor and outdoor games: video games, "catch," baseball (Genie was voted on one of the teams as an outfielder; she shagged some balls), bike/scooter riding, treehouse playing, and building Chris' "factory" system that includes remote controlled work vehicle. The guys all got along well and had a good time. Chris really enjoyed his presents, which were mostly games, things for his new "bike," and six books. Dad had baked cookies and a brownie birthday cake. Genie had a great time too, especially running like the wind outside; she is worn out tonight. The party was worth the wait.

Chris is eager to hone his computer skills, but didn't have time to do anything about it today. Dad's having problem with getting the computer (which was just moved to Chris' room) to enter the network in its new location, but he has made arrangements so that Chris can soon start e-mailing his friends. He even like the aquarium screen saver.

Medically, Chris did quite well and had no problems today but for the evening stomach cramps and one episode of diarrhea. He was a very happy, but tired, boy at bedtime tonight.

Joke of the day -- Who designed Noah's ark? An ark-itect.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, January 23, 2004 9:48 PM CST

Hi Everybuddy!

It's been another busy day for Chris, mostly focused around the clinic. He needed platelets (again). Today's blood test results showed that most things dropped a bit with: white blood cells dropping to 2.1 (normal: 4.0 - 12.0), hemoglobin dropping to 9.7 (normal: 11.5 - 14.5), platelets dropping to 15 (normal: 150 - 450) while the ANC held at 800 (normal: 1400 - 7400). Dad learned that chemo is still a "go" for next week; Chris is expected to get Irinotecan again. Chris was also authorized to attend school today. However, because of the timing of the platelet availability and the doctor's schedule, he was only there for about three hours. It was more of a bummer since Dad brought cookies today to Chris' class for Fun Friday, but Chris wasn't there at the right time to get any of them.

On the way into Chris' class though, Dad had to visit the school's main office to sign Chris out of school. He must have bumped into half of Chris' classmates along the way, all of whom were on various "missions." Dad was surprised to find that they all seem to know him and the definitely recognized baked cookies.

Chris was in a very good mood after school but was hungry since it was just about time for his class was to go to lunch. The guys stopped off at McDonalds for lunch. He finished it just as they arrived at the clinic, where Nurse Teri took care of him again. She is the one on whom he plays tricks (like holding his breath when she is trying to listen to his lungs). The two of them were both full of pranks. It is a lot of fun. The transfusion went without incident and Chris watched the movie, "Freaky Friday."

Once the guys got home this afternoon, they worked on moving a computer into Chris' room. It isn't hooked up to the Internet yet, but it should be by sometime tomorrow. Chris wants to be able to do his own e-mail, look up things on Ask Jeeves, play games, and do homework. The guys gave it a test tonight and it looks good to go.

Medically, Chris is doing reasonably well, contending only with a little bit of diarrhea. His hair is even becoming quite visible. Probably because of the low platelets and suppressed immune system, his athlete's foot is coming back with a vengeance on one foot; the skin under one toe has cracked open.

Over the past couple of days, Chris has been openly expressing his concern that he might die of cancer. Both tonight and last night, he mentioned to Mom that he knows that a few of his friends have died of cancer, and that we did not tell him right away because we were afraid that he might think that he would die from it too if we told him immediately. In fact tonight, Chris gave Mom a pin (smiley face of course) by which he wants her to remember him. Mom asked Chris if he felt like he was dying now. Chris said no. She asked him if he felt any different at all. Chris said no. Then they had a conversation about the many chronic illnesses that exist which require patients to get regular medical treatment but the patients otherwise lead long and active lives. They talked about how that's exactly what Chris has been doing for a long time now, and there's no reason to assume that that situation is going to change. The interesting thing was that Chris wasn't too afraid of his perception. He talked rather matter-of-factly and seemed to understand the chronic illness discussion. In fact he seemed fine afterwards, and even took the pin away from Mom, saying that she doesn't need it yet. It's a pretty heavy discussion for a 10 year old, but he seemed to be relieved to just talk about it from time to time.

Joke of the day -- Why didn't the man get his hair wet when it rained? He was bald.

We also want to say Happy Birthday to Uncle Tom!

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, January 22, 2004 9:02 PM CST

Hi Everybuddy!

Tonight was Chris' Cub Scout pack meeting, where he was presented his engineer pin. All the boys did well, but Chris had really put a lot of thought into helping Dad come up with the engineering program that was taught to the scouts. He was also very helpful today in assisting Dad develop volunteer tasks for the kids to do at school. The goal is to help students learn to be good citizens by volunteering to do things at school. They do many activities now but soon they'll be granted volunteer credit. Chris helps to develop kid friendly tasks and to align the tasks with that which the students usually do.

Chris had a good time at school although he was sort of sad that he had to take a laid back approach when his class played flag football. He functioned as a linebacker and did "ok." He knows that with low platelets and a mediport, he has to take things easy. (Dad has seen soldiers really get hurt playing flag football once or twice. Still, Chris hates having to "be careful" all of the time.) In today's case, the ball was fumbled and got away; Chris had to step over the ball and clear out of the way so that he was out of the way of any potential contact.

When Dad picked Chris up after school, the guys had some shopping errands to do. Chris and Dad discussed a problem with the treehouse steps; they decided to reinforce them with steel brackets. Dad got most of them installed earlier in the morning but the store didn't have all that was needed. So the guys got the stuff after school to finish up that project. (Hopefully it will get a workout during Chris' birthday party on Saturday.) They also had to get some Ethernet adapters so Dad could move a computer into Chris' room. Chris wasn't so knowledgeable about that problem, but he knows that he wants to get going on computers again. He should be up and running for his birthday party.

Once home, the guys went on another short bike ride. Chris really gets worn out quickly now, and he said that he is tired of being tired. In spite of that, Chris is really getting the hang of the new "bike" and was doing some figure eight's this afternoon. They also took Genie out for a walk. Chris almost got carried away since someone else was "walking" a dog (a big one) at the same time, and that one wasn't on a leash. Each kept well apart but it was exciting. He did well (so did Genie).

The guys met Mom at the pack meeting; they are somewhat lacking in discipline but the boys seem to have fun. As soon as that was over, we celebrated Chinese New Year by going to a Chinese restaurant. One of the servers had been a Boy Scout, so he had a nice conversation with Chris, who was still in uniform.

Medically, Chris had an uneventful day and seems to have lost his cough. His appetite at dinner was surprisingly low but he had eaten a hearty "dunch" again.

Joke of the day -- Do you know what's inside Aladdin's lamp? It would take a genie-us to find out.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, January 21, 2004 9:09 PM CST

Hi Everybuddy!

It was quite an effort awakening Chris this morning for some reason. When Dad and Genie initially went in Chris' room to get him up, he looked up and said hi, then was soon fast asleep again. He was really out. Genie is not one to be deterred though. He eventually got up and moving. The guys' first stop this morning was at the Tampa Clinic. Today's blood test results were pretty stable with: white blood cells remaining at 2.2 (normal: 4.0 - 12.0), hemoglobin holding at 10.4 (normal: 11.5 - 14.5), platelets dropping to 22 (normal: 150 - 450) while the ANC held at 800 (normal: 1400 - 7400). Because most of the factors were holding steady, it was decided to hold off on a platelet transfusion until after seeing Friday's blood test results. Chris was authorized to attend school today.

On the way to school, Chris asked if he could stop and pick up some scrumptious carrot cake. Since he is still a bit off in his weight (and will start another cycle of Irinotecan on Monday), Dad stopped. Chris has been tardy (due to clinic visits) on so many occasions, the school started a new attendance card for him.

Chris was in a very good mood after school. He was also very thirsty, so the guys stopped for a soft drink and a snack. His latest interest has been "Hot Tamales" candies (we didn't even know that he had tried it). As soon as they got home, Chris walked Genie before jumping on his new RR7 "bike." Today, he and Dad went on a "road trip" down a quiet neighborhood cul-de-sac street. It became evident that Chris has figured out how to ride the thing since he made some very sharp turns. He really has to lean into the turn for the "RR7" to work well.

He spent the rest of his afternoon doing homework (and made no mistakes) before playing video games. He tried a new game, called "Eye Toy," which, thanks to a video camera hook up, places him on the screen of the TV and into the game (sort of). He loved that, and later showed Mom how he could swat the air with his arms to make video game bad guys go away. He liked that game so well that he took the instruction manual to bed with him so that he could read it as his "bedtime story."

When Mom got home from work, she took Chris back to the computer, where they went through all of the many birthday e-mails that have come in for Chris. He was also quite excited to learn that his Mardi Gras "angels" from Louisiana are going to send some more Mardi Gras stuff for him. They have been doing this for years and have enabled kids (ok nurses, too) at the hospital, the clinic, the Ronald McDonald House, and last year, his class, to celebrate Mardi Gras in authentic New Orleans style. They're longtime friends from the Army; the last time they actually saw Chris, he was a baby.

Tonight's dog pile/keep-away game with Genie got off to a slow start. It didn't stay that way for long. Genie demonstrated yet again her fantastic ability to jump up from the floor, over Chris, and land on a bed and wrestle with Chris with her rope. She even managed to maneuver him off the bed once.

Joke of the day -- What do you call Tarzan when he visits Mars? Marzipan.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, January 20, 2004 10:17 PM CST

Hi Everybuddy!

We were so incredibly happy to see Chris celebrate his 10th birthday today. We clearly remember wondering whether Chris would ever see his 6th birthday, much less dream about him enjoying a 10th one. As parents, our joy is unbelievable right now. It's been a busy day for our little guy (not so little anymore), with a "modest" celebration at home. We'll do it right this weekend with some of his friends. Today he was awakened by Dad, Genie and Mom, when we sang "Happy Birthday" to him. Genie was there for moral support. It got him going this morning though. When he walked out into the hall, he saw a present that we don't know exactly what to call it. It's sort of like a three-wheeled go-cart that's pedal driven similar to a bicycle. It has a seat, two control levers and must be steered by the driver shifting his weight. He thinks that it's cool.

Today was a school day and was the day for its AR (Accelerated Reader) program. Chris was finally able to attend an AR party. He's been eligible for five such parties, but has missed them due to medical appointments. Today he received a silver star dog tag to add to his AR token collection. He was in a very good mood when Dad picked him up after school. He had two requests: to stop at McDonalds for some chicken and to get home so he could ride his new "bike." He calls it "RR7" (its brand name is Road Runner). Dad accommodated and Chris was able to try his "bike" with limited success. It is difficult to turn but Chris is quickly learning how to properly shift his weight to get control over it. He then got going on his homework.

Today was "Terrible Tuesday" and Chris worked diligently to finish his homework before CCD. Today we were responsible for the snacks, so Chris handed them out to the other "God School" students. When the guys returned home from CCD, they found Mom at home, which was unusually early for her. She was able to attend the Webelos meeting with the guys tonight. Today we were responsible for the meeting. Dad presented a class on how electricity is generated, distributed, as well as electrical safety. He used the computer and a lot of material that he obtained from the local power company's website. It went well and the scouts were very interested. After a brief snack break, the scouts worked on their last task. Chris and Dad had developed the plans for -- and eventually made "kits" for -- the scouts to build a catapult. Each scout had to put together his own kit and then use it in a competition to see which catapult shot a wiffle golf ball the farthest distance. Chris' did well but the clear winner was a boy named Keith who has a deformed spine. On the way home after the meeting, Chris observed that mere physical disability doesn't hold some people behind. How true that is.

Chris' request for dinner was pizza, pizza, and more pizza, so the birthday meal was a relatively late one at Pizza Hut. Surprisingly he ate only two slices of an extra cheesy pizza. He had fun playing "Truth or Dare" with Mom while waiting for the pizza to cook. He had a good time joking around with the employees, who of course know Chris well. One of them asked Chris out on a date, now that he's old enough to be in double digits. His face turned beet red, but he said, "Sure!"

Chris received numerous birthday cards, a few packages and some e-mail messages, as well as people writing in to him on his web page guestbook. He was awed by all of the attention, and we thank you all. He just missed a call from Uncle Tom in France, but he did speak with Grannylin and Granddad.

Medically, Chris' cough has become productive and he is coughing phlegm up now. He now has three little bumps on his head, complements of an accidental collision between his head and Genie's opened mouth. His appetite at dinner was surprisingly low but he did eat a hearty "dunch."

Chris shares this birthday with Uncle Pete (Happy Birthday!), as well as with Aunt Jackie and Uncle Bobby, who celebrate their anniversary on this day as well (Happy Anniversary!). Sadly, this year he also shared this day with his late Great Aunt Ruth, whose funeral Mass was today. She was a memorable lady. The last time Chris saw her was on our trip around North America. He was only about 3 years old at that time, but thought that she was cool. When you think about it, it is a pretty good way to rate an adult; she was "cool," too. We'll all miss her and all that she did for the ASPCA and chocolate lovers everywhere.

Joke of the day -- (a bird joke for Aunt Ruth) - What birds spend all their time on their knees? Birds of prey.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, January 19, 2004 8:51 PM CST

Hi Everybuddy!

Today was a nice leisurely day for Chris, one that included a few surprises. He slept in a little later than usual for a Monday, but woke up bright-eyed and bushy-tailed. Chris started his day at the Tampa Clinic. Today's blood test results were: white blood cells dropped to 2.2 (normal: 4.0 - 12.0), hemoglobin dropped to 10.4 (normal: 11.5 - 14.5), platelets dropped to 30 (normal: 150 - 450) while the ANC dropped to 800 (normal: 1400 - 7400). This effect is right on track, considering that he just finished his last cycle of chemo on Friday -- and that he's been getting chemo every other week since September. The good news though was that Chris actually gained a half pound. The doctor listened to his cough and then felt around his gut area (mostly for his liver); she said that everything seemed to be pretty normal. As soon as Chris left the examination room, some of the nurses ambushed him, presenting him with a birthday gift while singing "Happy Birthday." It turned out to be a fabulous "How Things Work" kit; he'll be able to make a lot of things, and the timing was very apropos considering he's been learning about engineering with the Scouts.

Chris and Dad went a shopping errand in anticipation of getting things ready for "Terrible Tuesday." Tomorrow is their turn to provide a snack for "God school" and at the Webelos den meeting, in addition to Dad's turn to continue teaching the Webelos about engineering. Chris spent some of his savings on a new Disney game, too. Once home, Chris and Dad designed and built the first prototype catapult for tomorrow's Webelos meeting. By the time they were finished, Greg had come to visit, so the three guys put the catapult through numerous tests and a few design changes. Genie tried to help by retrieving the plastic golf balls but she wouldn't voluntarily give any of them back. She was fired from her retriever job. Since Greg was visiting, Mom and Dad finished making catapult kits for the rest of the scouts to build tomorrow.

Greg and Chris played a few video games after helping with the scout project. Not ones to remain inside for too long, they went out on a spy mission. It was going well until Genie the Wonder Dog sneaked up on them during their mission; she made them scatter (even though she was on a leash). It was a very nice day and it was great to be outside. Later in the day, Chris received a call from Uncle Alex too.

Once Greg departed, Chris mentioned that he was hungry and came up with some ideas for his last meal as a nine year old. Of course pizza and quesadillas were mentioned, but he then opted for macaroni and cheese from his favorite restaurant. We had a very nice server and he gave her a happy face pin not long after placing his order. She liked it and gave him one of the restaurant's pins. Later, she surprised us all by bringing over the rest of the staff, along with a bowl of ice cream and a candle for his very last dessert as a nine year old (she thought that the concept was funny when he mentioned it earlier, but obviously the idea grew on her). On the way into the restaurant, we bumped in to Chris' principal, her daughter and grandchild. They all knew Chris and he was happily surprised.

Tonight we had a massive dog pile/keep-away game with Genie. Genie has an amazing ability to jump up from the floor, over Chris, and land on a bed. She demonstrated that ability on several occasions. Each time Chris thought that he had made things "impossible" for her to do so, she made it happen. It was fun.

Joke of the day -- Teacher's question: Why don't you have your homework? Student: Well, because I lost it fighting this kid who said you weren't the best teacher in the school.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, January 18, 2004 9:27 PM CST

Hi Everybuddy!

Chris had a nice time on our way back from Miami. Although he spent most of the time playing Nintendo games, we highlighted some of the beautiful things that we saw as we drove through first the Miami Beach area then driving US Route 41 (Tamiami Trail) through the Everglades and all the way back home. Just from the road, without even stopping, we saw more alligators than we could count; likewise for many species of birds. We stopped at the Big Cypress National Wildlife Preserve Visitors Center, where Chris worked on and earned a new Junior Range pin. Chris hasn't worked toward a Junior Ranger pin in years (since our big RV trip in 1997), so it was fun and definitely got him involved in the park. While there, Chris learned that there are now about 80 Florida Panthers left in the Everglades area (up from about 30 such cats, which was the count about 10 years ago, as a result of the introduction of 8 Texas panthers to help control the diseases resulting from inbreeding). The ranger said that the Everglades can't really support more than 80 - 100 panthers because there is not enough food or land. The only downside to stopping at the Visitor's Center was that by the time we finished, a torrential rain storm had started. It kept up for about an hour, so Dad didn't have much fun while driving in it. Fortunately the rain didn't last all that long, and most of the drive was beautiful. Route 41 takes a little longer to travel, but is a little more interesting. We stopped a few times to walk the dog and for meals. Genie travels well; she's usually in the back of the van, either asleep or looking out the window.

When we got home, we made quick work of unloading the van. By this time, Genie was happy to be out of the van and was eager to get into the "dog pile mode" with Chris. Chris open his mail and found intriguing mail from a dear friend, "Aunt" Cathy. She and her family (including relatives from more than one continent) had collected all sorts of coins (a staggering amount) and presented it to Chris in the form of a check for his birthday. It's amazing how those pennies and nickels really add up. A heartfelt thank you to "Aunt" Cathy and family!

Medically, Chris cough has worsened a bit, but still sounds like it's of the postnasal drip variety. He'll be at the Tampa Clinic tomorrow, so a medical professional will be able to check it out then.

Joke of the day - What do you call a happy Genie? A jolly collie.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, January 17, 2004 10:10 PM CST

Hi Everybuddy!

Chris had and Genie had really great days today. While Mom was at her Army Drill, Chris and Dad went to visit with our friends in Hollywood. At one time their daughter was struggling with Nb also. Chris likes her and her older brother Michael Anthony (who is a skateboarder). First the guys went to check that Mom had reached the conference area that her Army Reserve meeting was being held. Chris also managed to come up with a free map of Miami that's helped put. Dad had walked Genie early in the morning to scout out the route and then Mom walked it a little later to get to the meeting. The guys were just making sure that she got their safely.

The guys also blundered into a store that sold gags as Chris wanted to bring Christa and Michael Anthony something. All we can say is that he was successful much to the regret of Michael Anthony's parents.

Genie was invited too and we're happy to report that she got along quite well with the two dogs in residence there, a beagle and a dalmatian. We know of three tired dogs in this world because all three dogs were relatively young and wanted to play.

The guys were treated to a great lunch by Christa's Grandmother and everyone just had a nice time. When we got back to the house, Chris and Michael Anthony did some things on their scooters. Chris also watched Michael Anthony skateboard for a bit. Dad left Chris their and went back into the city and picked up Mom who finally finished her meeting and special committee meeting that she's on (she just cannot get enough). We then linked up back at Christa's house and we all went out to a fine Italian restaurant. All-in-all, it was just a nice day all around.

Joke of the day (from Michael Anthony) -- What do you call someone who teaches you how to play the flute? A Tooter (tutor).

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, January 16, 2004 10:11 PM CST

Hi Everybuddy!

Its been a long day and we are writing this update from a room inside a hotel that Chris equates to the "haunted mansion." It is a very old hotel in downtown Miami but it is in walking distance to the place where Alison as Army duties tomorrow.

Chris started his day at the Tampa Clinic. Today's blood test results were: white blood cells dropped to 3.4 (normal: 4.0 - 12.0), hemoglobin rose to 10.9 (normal: 11.5 - 14.5), platelets were 61 (normal: 150 - 450) while the ANC dropped to 1700 (normal: 1400 - 7400). He was cleared for school attendance. Chris maintained his weight.

Chris had a good time in school. It was fun Friday so that means they usually take a math test in the afternoon and free up more time for recess and "funtime." Dad picked up Chris from school and Mom and Dad gave him just enough time to pack his toys and stuff bag and then we were all of on the road to Miami. The trip seemed to go faster than usual and Chris spent most of the trip playing Nintendo. For a family first, Chris took his last dose of chemo this cycle in a moving van (they are capsules). Chris had a "dunch " just as we departed on the trip and a light dinner half way through the trip.

The hotel is a bit hard to find (e.g., it has no sign) and we drove past it a few times (it was late and not fun). Chris has it characterized fairly well (at least by appearances) and he had to check to see that none of the eyes in the pictures were watching him. The hotel's elevator is still operated by a human so Chris thought that was a bit different. It definitely was.

Joke of the day -- Why were you late? Sorry, teacher, I overslept. You mean you need to sleep at home too!

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, January 15, 2004 9:58 PM CST

Hi Everybuddy!

Chris had as about a normal day as a person can have while actively taking chemo. The morning started out "unusually" normal in that Chris got up pretty readily and ate his breakfast without the usual "slowness." (It's not uncommon for him to take a half hour to eat one poptart, slice of toast or a waffle.) This morning though, he got through breakfast, brushed his teeth and otherwise did his "morning stuff" in record time before he and Dad headed off to school. Halfway to school, Chris noticed that his jeans had one leg on and one leg off (he was wearing the kind that convert between long pants and shorts through the use of zippers around each pant leg at about knee level). Needless to say, Dad was upset but they decided that it would be easiest to convert the pants to shorts (with all due respect to our friends up north (who we hope are fairing well with the brunt of winter, temperatures here have been in the 70s, so shorts were still an option). Dad hadn't really paid much attention to Chris' appearance prior to departure. It sure made for a funny story a little later though.

Chris had a good time in school today. There was no math class, but the afternoon was filled with social studies. He also had peer mediation training with his teammate, who is a friend of his. They had a good time coaching kindergartners during the practice session.

After school, the guys stayed at school since Dad had a meeting with a teacher who is helping him develop a student volunteer program for the school. The teacher was very nice; she enabled Chris to take an "AR" reading test on one of her machines. The book, "The Hobbit," is supposedly above his reading level but she permitted Chris to access the test. He passed it with a score of 90. He was happy and really knows the book well. Chris read a while, too. He was in the vicinity of Dad's meeting. After a while, he decided to join in (which was ok with the teacher and Dad) and shared some good ideas, too. Sometimes grown-ups can learn a lot from a kid. Chris has also helped Dad develop some of the service tasks that the kids could volunteer to perform (which is the subject of Dad's project).

Once home, Chris learned that he received a lot of mail: magazines, cards and letters, and a gift from Uncle Jonathan. Well, since it was a video game, Chris moved into that right away (he had already finished his homework). Tonight while playing with the dog, Genie injected herself between Dad and Chris in order to protect Chris from the bad guy (formerly known as "Homework Man"). Well, she tried to protect Chris -- once she accidentally scratched Chris and he's got the new mark to prove it (we just love those platelets). Chris also thanked Grandma and Grandpa for some books, then proceeded to talk their ears off. Every once in a while, the kid turns into a motor mouth, but at least when he does that, he's usually funny.

We have a request directed to all of our friends in northern Virginia. Chris' very close friend, Allie, needs more blood products as a result of her recent harsh chemotherapy treatments. Her blood type is O positive and her parents are looking to start up a blood support team similar to what our friends here have done for Chris. We're sure that Chris' blood team have helped save his life. Apparently, the blood supply in northern Virginia (as it is throughout most of the US) is so depleted that some surgeries (not for her though) have been canceled or postponed. She could really use some support: blood, prayer or otherwise. If you'd like to learn more, please you can call Inova Blood Donor Services at 1-866-256-6372 or log on to www.inova.org/donateblood. You can also visit her webpage: www.caringbridge.org/va/allie.

Joke of the day -- What has antlers and sucks blood? A moose-quito (unfortunately, it's not on the endangered species list).

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, January 14, 2004 9:19 PM CST

Hi Everybuddy!

Talk about a crazy unpredictable day! After the usual "morning stuff," Chris and Dad went to the Tampa Clinic for a routine blood test. The results were a bit surprising since Chris hasn't really been "sick" as per se. His hemoglobin climbed almost two points after falling almost two points, which could happen (they say) if he was noticeably ill. But for a few sniffles, he's not ill. Today's blood test results were: white blood cells rose to 3.6 (normal: 4.0 - 12.0), hemoglobin rose to 10.4 (normal: 11.5 - 14.5), platelets dropped to 22 (normal: 150 - 450) while the ANC remained at 1900 (normal: 1400 - 7400). He was cleared for school attendance. Dad and the doctor debated about whether or not Chris should get a platelet transfusion and determined that it was probably best to wait until Friday before transfusing. The most significant information from Chris' most recent "full panel" test are the following: ALT 69 (normal: 12 - 34), AST 59 (normal: 22 - 44), and BUN/CRE Ratio 24 (normal: 15 - 24). These are elevated liver function results, which means that Chris' liver is working less efficiently than if it were completely healthy. However, he's had worse, and considering that he's been receiving chemotherapy for quite some time, these numbers really aren't so bad.

On the way to school, the guys stopped to get Chris some more pocket tissues as well as some "scrumptious" carrot cake. Surprisingly, he dropped one kilogram (about two pounds) just since Monday. Chris had a good time in school. Today he received his report card; Chris got mostly A's with some B's. He also was presented a certificate for his good behavior. Considering how often he is tardy or to a lesser degree absent, or even just tired due to treatment, we're quite pleased with his efforts.

While Chris was at school, a member of the clinic staff called Dad. It turned out that some of Chris' directed donor platelets were going to expire tonight (they are only good for five days from the date of donation). After a short discussion with the medical staff, the decision was made to got ahead and transfuse him after all. So, Dad picked Chris up after school stopped by McDonalds for a snack on the way to the clinic (a platelet transfusion usually requires about two hours to complete). The clinic was packed when they arrived, so Chris' transfusion started his transfusion in an examination room (the guys just played some Uno to past the time). After about twenty minutes, the infusion room had cleared out considerably, so Chris was brought in and set up next to his friend, Christina, who had been there most of the day. The two watched Chris' movie, "Galaxy Quest." Chris, Dad, two nurses, the doctor, and the security guard closed down the clinic tonight.

The guys then made a hasty departure since Chris had an evening appointment with the priest as the last step in completing his Cub Scout religious award. The priest was very impressed with Chris' banner. He placed it in the window of his office so that his parishioners could see it and said that it would likely be moved into the church later. He also said that Chris had done some good work on the project.

After the appointment, we went to a pizza place near the church just to celebrate meeting the requirements of the semester, his scout award, and another day. Sadly, Mom had to tell Chris that his fish, Cici, had been found upside down in his tank. Chris took the news fairly well, knowing that Cici had lived a fairly long life for a beta fish. Later this evening though, Chris did not want to read a joke in his Disney magazine that was about an aquarium. We thought about possibly replacing Cici with a goldfish this spring. We shall see.

Joke of the day -- A man and a dog were going down the street. The man rode, yet walked. What was the dog's name? Yet.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, January 13, 2004 9:08 PM CST

Hi Everybuddy!

Chris had a good day today and only needed one dose of "emergency" medicine: a Sudafed for congestion in school. Genie repeated her performance this morning by awakening him and dropping her rope toy right on his belly. That got him going!

Chris did his "pony express drop off," not thinking that he'd see Dad until after school. But he was very much surprised when Dad brought him a dose of Sudafed into his classroom a few hours later. What Chris didn't know was that Dad had been in a meeting with the principal and some county safety people about redirecting the flow of traffic in front of the school. As soon as the meeting was over, the school nurse latched onto Dad and explained Chris' request for Sudafed. It was ok for him to get it but would have involved Chris and an escort coming to the school's clinic so Dad volunteered to take the medicine to him. When Dad entered the classroom, Chris was reading to the class with his back to Dad. As a result, everyone else saw (and recognized Dad) except for Chris, who then got a big surprise. (He was reading quite well by the way.)

After school, Chris wanted to eat a snack, ride his bicycle, and have a "dog pile" with Genie. Dad let Chris in on a secret: Dad has been training Genie to walk outside without a leash. She does quite well but still has some work to do before she gets over being tempted by a squirrel or other distraction (like neighbor, Hershey D. Cat). After doing those three things on his priority list, Chris settled down to doing his homework since he had to go to religious education this afternoon. "God school" went well and he had a good time with Greg; Dad found those two goofing off after class.

As soon as Mom came home, we all headed over to Greg's house (his mom is the Cub Scout religious award coordinator). She and Chris reviewed Chris' work and his banner. She liked it and signed off so that he can meet with the priest tomorrow. Of course he and Greg managed to goof off there for a bit, too.

Joke of the day -- Doctor, Doctor will this ointment clear up my spots? I never make rash promises.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, January 12, 2004 9:06 PM CST

Hi Everybuddy!

It was a nice day for Chris and he experienced no side-effects from chemo. He seems to have a cold now, however. Genie got him good this morning on wake up: she dropped her rope toy right on his rear end, and then "nibbled" him a bit as she attempted to pick it up again. He thought that it was funny.

He did well with breakfast today. Chris had a good time at the clinic and for the first time, had some spectators during hacky-sack ball (the guys usually stop playing whenever someone else is in the room; it's too small to play that safely when others are around). Today, it was a teenage girl who seems to like Chris, and her Dad. They thought that it was a gas. Today's blood test results were: white blood cells rose to 3.3 (normal: 4.0 - 12.0), hemoglobin dropped to 8.7 (normal: 11.5 - 14.5), platelets dropped to 26 (normal: 150 - 450) while the ANC rose to 1900 (normal: 1400 - 7400). He was cleared for school attendance and start a cycle of the chemo agent Temodal. He was examined by the doctor who just marvels at the extent of bruises and scrapes that Chris has accumulated while "dog-piling."

On the way to school, the guys stopped to get Chris some more pocket tissues, and Chris conned Dad into some carrot cake (even though he is already almost all the way back to his normal weight again). Chris had a good time in school, where he worked on a lot of geometry and read some of his "Fellowship of the Ring" book. Even though he enjoys school, Chris still gets very tired from time to time, including in the classroom. Dad offered to take Chris by McDonalds, but he declined the offer.

After the guys arrived home, Chris was pretty much on his own, but for Genie the Wonderdog, who sat next to Chris allegedly helping him with his homework. Dad has been trying to get one of the computers set up to be placed in Chris' room. It's being obstinate so that's consuming a lot of Dad's time. Chris ate well at dinner time.

During tonight's dog-pile, Genie did a god job leaping over all of us to get to her rope toy. She played a little game of nipping at Chris feet which was funny and didn't actually get at his feet. It is a common tactic used by border collies to control other animals; we suspect that Genie has a lot of border collie in her. The tactic worked.

Joke of the day -- Have you seen the goldfish website? Yes, I was really bowled over.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, January 11, 2004 9:31 PM CST

Hi Everybuddy!

It was a little warmer today so Chris spent some time outside in front of the house looking for spies. Happily, he didn't find any. He had a nice morning today and even managed to eat all of his breakfast (which admittedly was only a pop-tart, but it's better than he had been eating this week). Church was nice and afterwards, he and Mom ran into some members of his pack who were selling doughnuts as a fundraiser. They bought some of course but we didn't even know that the pack was selling them today.

They quickly stopped by the used bookstore where Chris had some book credits. He bought Tolkien's' book, "The Simarilion" and a how-to book about juggling, his most recent passion. He is going to hold off reading "The Simarilion" until after he finishes all of the books in the "Lord of the Rings" series, but he wanted to make sure that he had the book available. Mom brought home a pizza (not Pizza Hut, but from another company that is carryout only) We hoped for a possible call from "Grandpa Joe," the author of the "Snag and Me" book series that Chris enjoyed. He follows Chris' struggle, and happened to be on vacation elsewhere in Florida.

Chris played outdoors a couple of times, and as usual, "spying" was the focus. We don't know what that means since we can see him all of the time but it involves riding his scooter and bicycle. He and Mom also played a Muppets video game. Chris had never played that one before, so Mom actually had an outside chance against him. She still didn't win, but she had hopes at the beginning . . . One of the big missions for today was the usual grocery shopping. As usual, Chris was a big help, especially later, when it was time to put things away. He disappeared while dinner was being cooked, but we found him and Genie hanging out in the master bedroom watching TV.

In other news, Chris finished all of the requirements for his Cub Scout religious award, but for meeting with the priest. He's been working on it for months. Today, he finished working on his banner with a religious theme (it looks really nice) and finished his last candlelit Bible reading ceremony. He especially liked the candle ceremony, in which he learned that we all have a little bit of God's light and it's our job to spread that light around. That was emphasized when the flames of our individual smaller candles grew as they were placed next to each other, then grew even more when they were placed next to the bigger candle, which represented God's light. (Borrowing also from Candlelighters, an organization that helps the families of children with cancer, "It is better to light a candle than to curse the darkness.")

From a medical perspective, Chris was generally feeling better. He's got a few sniffles, has a headful of stubble as his hair is trying to grow in again, and is eating better. He's still very pale and bruises very easily. We are fairly confident that he'll need a platelet transfusion tomorrow. His energy level comes and goes, but was better today than it has been throughout the week.

Joke of the day -- Where did the pilgrims land when they came to America? On their feet.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, January 10, 2004 9:22 PM CST

Hi Everybuddy!

It was a quite a normal day for Chris but for one period of bad cramps. After a leisurely wake up this morning, Chris called Greg to see if he could come over for a visit. He could. Chris and Dad then went to get him, then went on a shopping quest for the treehouse and Chris' banner project for his Cub Scout religious award. The shopping trips to three stores were unsuccessful but the two boys managed to talk Dad into lunch at McDonalds. It turned out that they both like Chicken McNuggets.

Once home, the guys did a little of everything. First they played a video game that Greg had brought with him. Then a spy mission began, and the details are so secret that Mom and Dad still don't know what the plan was. The boys also watched the movie, "Kangaroo Jack." Then they roped Dad into a game of indoor soccer. It started out close until Dad got into the rhythm of such things again. Finally, they went out on a second part of the spy mission. All Chris would say was that it isn''t finished yet. While performing the mission, the boys rode Chris' scooter and bicycle. It was kind of chilly here (in the fifties) with some wind so they only stayed outside for about a half hour at a time.

Not long after Greg left, Mom returned home from drill with the Army Reserve, and we all (ok, not Chris, but he didn't object too strenuously) thought that it was time for soup and salad. We went to the "salad restaurant" (as Chris calls it) and dined. He ate fairly well at dinner (even better than at lunch) and is happy about the return of his appetite. He seemed to have missed it, in a way. We returned home after stopping at a couple of nearby shops, one of which was to gather the needed materials for Chris' religious themed banner for church. Whew! Chris didn't get much goof off time back at home we (Mom and Dad) were tired. But Chris was his usual goofy self during showertime and storytime, and we're happy about that.

Joke of the day -- (a Chris and Greg discussion) - Chris to Dad, "I wonder what color the airbag is?" Dad, "Probably gray or beige, I hope never to find out." Chris to Greg, "Do you think that it might be yellow with red polka-dots?" Greg to Chris, "Ha, nope. Only if it's a clown's car. They pack so many clowns into those things, they probably don't need airbags."

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, January 9, 2004 9:36 PM CST

Hi Everybuddy!

Chris had a much better day. He had only one bout of diarrhea this afternoon although there was some nausea on the heels of the diarrhea. He didn't have any cramps or vomiting, and is happy about his improved state of health. His appetite is on the rebound. He ate about 1/3 of his cereal this morning, had some of his school lunch, some chicken McNuggets after school and a grilled cheese sandwich for dinner. His weight held at 30.7 kg (67.7 lbs). It's still down from the 70 lbs. he had been in the not so distant past, but at least he didn't shrink any more. (Losing a few pounds for children is a bigger deal than it is for adults because of the lower overall body weight and because they are supposed to be growing, not shrinking. A 3 lbs. loss is the equivalent of losing almost 5% of his body weight.)

Chris had a good visit at the Tampa clinic, where he enjoyed playing hacky-sack ball and trading barbs with the nurses. They really do like Chris. Today's blood test results were: white blood cells rose to 2.7 (normal: 4.0 - 12.0), hemoglobin dropped to 10.6 (normal: 11.5 - 14.5), platelets dropped to 34 (normal: 150 - 450) while the ANC rose to 800 (normal: 1400 - 7400). He was cleared for school attendance and will start a cycle of chemo on Monday using the agent, Temodal.

On the way to school, Dad offered to stop and get him a snack, but Chris said that he was eager to get to class (hmm, no explanation on that one). Chris had a good time at school and was even able to read further along in his "Fellowship of the Ring" book during "Fun Friday" activities. Chris didn't have any side-effects problems at school today. After leaving school, the guys stropped by McDonalds to get some chicken McNuggets to the by-then hungry Chris.

After the guys got home, Chris, Dad and Genie went out to make some repairs on Chris' treehouse (it's about time for some new stairs) and to begin the effort of bringing electricity into the treehouse. Unfortunately, this is when Chris had trouble with the nausea and diarrhea so he missed much of it. Dad made a good start at things and Genie made a new friend of a neighbor on the other side of the fence. Genie wagged her tail so emphatically that her whole rear end was wagging right along with it. Chris asked to go out to get some of his favorite macaroni and cheese, but Mom got off from work so late that we ended up going to an alternate location, where he did a pretty good job on his dinner. He doesn't usually eat a lot as per se, but it is disheartening to see him eat hardly anything. Fortunately, his appetite tried to rally today.

After dinner, we made a stop at the bookstore since Grandma and Grandpa told him that he could get some books. He got a book on juggling (Uncle Tom, watch out) and the "Return of the King." He is making good progress with "The Fellowship of the Ring." Thanks Grandma and Grandpa.

Joke of the day -- What's green and smells like paint? Green paint (tricked ya, didn't he?).

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, January 8, 2004 9:29 PM CST

Hi Everybuddy!

Today had the potential of being a normal day for Chris. His appetite was still poor for breakfast but at least he had no cramps, diarrhea or vomiting. Chris even woke up pretty readily when Genie (aka "rope girl," named for her favorite toy) helped wake him up by pouncing on his bed with her chew rope in her mouth. Now that has got to wake up anyone.

Chris made it all the way through school today without any side-effect problems. He got to attend some more peer mediator training which he thought was good. When Dad picked him up, he was in very good spirits and hungry despite having had a chicken filet sandwich for lunch. Dad wanted to speak with one of the other moms and his teacher, who unbeknownst to Dad, were in having a parent-teacher conference. That left Chris, Dad, and one of his classmates (the Mom's daughter) outside in the hall (an open air kind of walkway). Since the weather was so nice, we decided to wait, play hangman, and do homework. Playing hangman with two kids who still can't spell very well was definitely a trick; it resulted in a lot of laughter. After about an hour, Dad managed to get in on the "second" meeting with the other mom and the teacher. After that, the guys headed to McDonalds where Chris got a small chicken McNuggets meal. He ate well.

While waiting to get through the drive-thru, Dad decided to discuss one of the upcoming visit of some friends who we got to know while both Chris and their son were receiving treatment in New York. Regrettably, their son, Chris' friend, didn't survive his battle against neuroblastoma. Dad let Chris know about this today so that it would not be a surprise when the family arrives. Chris became very quiet. Dad told him that some kids make it and some don't; Chris understands this. He asked if any other of his friends had died and specifically asked about Hunter (thankfully, he asked only about one friend). Hunter also did not survive, and Chris became quiet again. He then asked if we would tell him whenever any of his friends from the hospital die. Dad said that he would. Dad then asked if it would be alright for the family to come visit, even though their son had passed on. Chris said, "I sure hope they do" (they have a daughter who is Chris' age as well as a younger boy). Dad was glad that he didn't ask about so many of his friends. Chris certainly understands that there is always a chance that his cancer could worsen, but then he and Dad speak about people like Christa, Michael, Jack, Riley, and some of the other kids who have been able to fight and win. He always seems to end those type of discussions on a positive note. Mom was prepared to deal with some emotional aftermath of this conversation at bedtime, when he is sometimes emotional. However, Chris did not mention the subject at all, nor did he appear to be thinking about it all then.

When the guys arrived home after school, playing with Genie was a high priority. Unfortunately, when Dad got off the phone about some school business, he learned that Chris was in the bathroom. Chris, ever the professional patient, was handling diarrhea and vomiting at the same time again. He definitely lost his "dunch" from McDonalds. Once that was over with, Chris was back to being his usual cheerful energetic self, and they treated Genie to a dog pile.

Chris seemed to feel better but he spent a quiet afternoon waiting for our friend Cate to arrive for dinner. We also found out that Genie the wonder dog had carried Chris new educational device, his new iQuest, into the living room. Fortunately she had not devoured it (unlike a toy PDA a couple of months ago). Later in the evening, Mom and then Cate arrived. Dad finished making dinner (barbecued chicken, steamed rice, and corn -- some of Chris' favorites). It was good but Chris didn't eat as much as we'd hope that he would. Later, Cate got in on a dog pile and stayed for story time.

Joke of the day -- Why shouldn't you grab a werewolf by its tail? It might be the werewolf's tail but it could be the end of you.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, January 7, 2004 9:24 PM CST

Hi Everybuddy!

Chris had very difficult time last night and was still visiting the bathroom when Dad got up to take Genie out at about 6 this morning. He said that he'd been to the bathroom at least eight times throughout the night. Not long after that, he vomited, too, just before breakfast. Despite all of that, he went about his normal day. His appetite may be trying to rebound, although he couldn't eat hardly anything this morning. He had a corndog for lunch, a "dunch" of chicken McNuggets, and most of two slices of pizza for dinner. He's lost a little over a kilogram now, which is about five percent of his body weight.

Chris' real day started out at the Tampa Clinic, which was up to its usual good efficiency. Today's blood test results were: white blood cells dropped to about 1.8 (normal: 4.0 - 12.0), hemoglobin rose to 10.7 (normal: 11.5 - 14.5), platelets were 45 (normal: 150 - 450) (probably because of Monday's transfusion), while the ANC remained at 600 (normal: 1400 - 7400). He was cleared for school attendance.

On the way to school, Dad got him some carrot cake to eat since he likes it. But after having it in hand, Chris couldn't eat it, no matter how much he wanted to. Drop-off at school went well and except for having to ask the school nurse for a dose of Imodium, school activities went well. When Dad showed up at the end of the day, he brought Chris a "dunch" of chicken McNuggets. Fortunately, Chris' tummy was able to handle it then, so he ate it in good order. The guys then went back into the classroom since Dad had to attend a School Advisory Council meeting. Chris did his homework and read "The Fellowship of the Rings."

Once home, the guys played with Genie for a while, then Chris was on his own in the house while Dad did some yard work. Chris had one research question to answer and he used his new iQuest device to find the answer. Chris went outside for a while in order to walk the dog, then he and Dad rode his scooter and their bicycles. He tired readily but gave it a good try for as long as he could.

Later in the evening, Chris received a surprise call from Uncle Jonathan. He was critiqued on a video game he was playing and received some good advice as to how to better handle the game. There actually is a lot of strategy involved in some of these games.

Joke of the day -- What do you do with a green monster? Put it in the sun until it ripens.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, January 6, 2004 9:56 PM CST

Hi Everybuddy!

Chris survived (and even enjoyed) his first day back at school. His favorite part was math class; he's being introduced to geometry. Unfortunately though, Chris was up throughout the night last night, so he did not get the ideal rest before heading back to school. Dad could tell at 4:30 a.m. (one of several times that Chris got up last night), when he gave Chris some Imodium, that it was going to be tough to awaken him at 6:30 a.m. (his usual wake-up time on school days) this morning. It was, too. Genie tried her best to get Chris moving by laying on him, but eventually Dad had to edge Chris' legs over the side of the bed and have him sit up.

His appetite is still poor, but he did ask for (and receive) a McDonalds "dunch" (Chris and Dad's word for an early dinner right after school). The guys headed for home as it was terrible Tuesday: Chris still had to get to "God school" and the Cub Scouts den meeting tonight. Tonight was Dad's turn to be the instructor for the scouts, who are now working toward earning their engineer pin.

Chris did most his homework before heading off to "God school." He also helped Dad make some final preparations for this evening's scout activities. "God school" went well and Chris was able to make an arrangement to interview one of the Cub Scout Moms who happens to work at our church. He needed to interview someone who works or volunteers at the church as part of earning his religious award. The idea was to gain an appreciation for some of the behind-the-scenes things that go on at the church.

After a quick trip home so that Chris could change into uniform, the guys headed off to the scout meeting, where they met up with Mom. Chris had really done a lot to help make the presentation kid-friendly. After being introduced to what engineers do, the kids then watched a Magic School Bus tape on bridge construction before receiving a presentation on the major types of bridges. The patrol was then broken into teams, each of which had to make a bridge using gum drops and toothpicks. Each team ended up with a different design. Amazingly, all of the bridges did a very good job of carrying the weight of additional gum drops, which were stacked on them until they almost failed. Chris was "elected" as captain of his bridge team. They came up with a pretty good bridge design that eventually won. There was one more project that Dad offered up even though it was getting late. Surprisingly, all of the parents approved their kids remaining for another 20 minutes in order to allow the scouts to make an electrical circuit using quilters pins, wire, hair clasp, battery, and Christmas tree light. With some effort, all of the boys completed their respective circuits. Everyone seemed to have a good time with the very hands-on experiences tonight.

Once home, Chris tried to eat a grilled cheese sandwich but only got half way through it. It's obvious that his appetite remains poor. At least the diarrhea and nausea seem to be subsiding a bit.

Joke of the day -- What do you do with a blue monster? Try and cheer him up.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, January 5, 2004 9:14 PM CST

Hi Everybuddy!

Chris' appetite is still on the decline and now so is his weight. He is down one half of a kilogram from Friday's weight. Chris submitted a urine sample and had blood drawn for a blood test. Today's blood test results were: white blood cells dropped to about 1.9 (normal: 4.0 - 12.0), hemoglobin rose to 10.1 (normal: 11.5 - 14.5), platelets dropped to 22 (normal: 150 - 450), while the ANC dropped to 600 (normal: 1400 - 7400). The doctor decided to transfuse platelets today in the hopes of not interfering with school, which starts tomorrow. Chris' G-CSF shots are on hold until we see what the next blood test results bring. The guys were told to return at 2 p.m. for the platelet transfusion.

In the meantime, Chris and Dad did some shopping errands in final preparation for tomorrow's Webelos meeting. Dad is helping the scouts work towards their engineer pins. Chris and Dad have gone through it already in order to determine the best way to present the material to the Scouts; Chris has already earned the pin by so doing this. After his chore, the guys headed home, where Chris pretty much passed the time reading "The Lord of the Rings: Fellowship of the Ring." Dad worked on his "Cub Scout homework."

Chris asked to delay lunch a bit so that he could eat at Mel's Hot Dogs. Dad agreed, but in spite of that, Chris only ordered one hot dog and didn't even finish eating the whole thing. That all by itself speaks volumes about how he's feeling. Chris said that chemo even makes Mel's hot dogs taste different. He still thought that the cherry coke tasted great though.

Upon returning to the clinic, Chris was quickly moved in and his mediport was accessed. He received a lot of platelets today. Chris delighted everyone working at the clinic by asking them questions from his iQuest device. He made them all answer eighth grade questions (which most of them thankfully remembered). He didn't do too badly himself; sometimes we just have to wonder where he learns some of this stuff. His infusion roommate was a very cute teenage girl who likewise thinks that Chris is just sooo cute. She is very polite and always speaks with Chris as if he were a peer. They watched Disney's "The Princess of Thieves" before they both (Chris first, then the girl) fell asleep because of their premedications. It is good for Chris when he sees an older kid doing what she's doing and behaving as well as she does.

Once freed of the tubes and de-accessed, Chris tried to give Greg a call to see if they could get together one last time before school starts again, but Greg had soccer practice today. Chris and Dad ended up heading home and making kits up for the Scouts so they can learn about, and build, a bridge and an electrical circuit. Chris has kid-tested everything so it should go well tomorrow. They also got a call from his den leader, who was just checking in. He told the guys a story about seeing Chris' picture in the headquarters of a company with whom he does business -- the very same company that so graciously built Chris' treehouse. It is a small world and it is nice to know that so many people are pulling for Chris through all of this.

Joke of the day -- What kind of book did Frankenstein's monster like to read? One with a cemetery plot.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, January 4, 2004 9:33 PM CST

Hi Everybuddy!

Chris enjoyed another fairly normal kind of day, despite a few bouts of nausea, diarrhea and some fatigue. Chris was awakened by Mom and Genie as Dad was already working on outdoor projects. The weather was in the high seventies again and it was another beautiful day. Chris tried to eat breakfast (an apple) but all he could manage was about a quarter of the apple. He managed to get through church without much difficulty though, as a result of having taken Imodium and Zofran at breakfast time. After Mass, he managed to eat most of a cheese personal pan pizza, but even that was not assured. That gave him enough energy to accompany Mom on a few shopping errands; he walked very slowly and not as far as he typically can. He wound up with the new iQuest device that he wanted. He's starting with the fifth grade science cartridge. The tummy troubles started while they were in the pharmacy, and the poor kid was in the bathroom for quite a while.

Once home, Chris quietly spent his time trying to get his new learning system in order and playing the Nancy Drew video game. He had a couple of energy bursts, during which he helped to vacuum the floor in the aftermath of the post-Christmas season cleanup. Chris did a good job as he tried to help Mom for his "I love you day" project (a required task in his Cub Scout religious award -- doing something to show love is required as part of the award, not specifically vacuuming). He also managed to swing a couple dogpiles with Genie. Although he fared much better today against the wonder dog, it wasn't due to overwhelming energy. Perhaps Genie was being sensitive to Chris' slower speed today.

Chris is simultaneously reading the first of the "Lord of the Rings" books, and a Nancy Drew mystery book. He got that one at a nearby used book store, where he traded in some "kid books" and now has a store credit. The interest in Nancy Drew is stemming from his video game; he's nearing the solution on that mystery.

Grandma and Grandpa gave Chris a call to check up on how things were going, and shared a few jokes.

Joke of the day -- Waiter, this soup tastes funny. Waiter to customer: Then why aren't you laughing?

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, January 3, 2004 9:35 PM CST

Hi Everybuddy!

Chris enjoyed a fairly normal kind of day, but for a few bouts of nausea and diarrhea. He was awakened by Mom and Genie at around 10 a.m., tried to eat a normal breakfast of cereal (cramps prevented that from happening though), and then he finally got connected with his friend Greg, who was able to come over for a visit. Those two were pretty much on their own since both Mom and Dad were in the process of taking down Christmas decorations. Chris and Greg focused on the treehouse for a while and even asked for some paint to paint the interior. However, Dad was on the roof for much of the afternoon and couldn't oversee the proposed painting project. They played a lot of video games on a variety of gaming systems. The two are good when playing, balancing challenges against each other, sharing, and having fun. They also went outside and played in the yard for a bit (looking for "bad guys" -- thankfully they didn't find any) since it was such a beautiful day and goofed off with Genie.

After Greg left, Chris went back to playing games and with Genie the wonder dog. Those two have taken "dog piling" to a new plateau. Genie not only can maneuver Chris off of the bed (the usual dog-pile arena), but is sometimes successful in keeping him off. She has all the right moves as a border collie. She has also mastered nipping at him which he likes but unfortunately leaves all sorts of little bruises on him when his platelets are low. He always seems to "forget" about having her stop when they are playing.

We broke out of the house for just a bit of shopping. Chris has saved some funds to by an iGenius (something like that) system, which is an educational platform for math, English, social studies, and science "books." He says that he is ready for fifth grade stuff, and he promised Mom that if he gets it, he'll turn out to be someone that she can be proud of (like she's not proud of him already -- what a "pitch" for a new gadget!) Unfortunately, the store we went to today was sold out, so we'll try again tomorrow. Mom quipped about how the educational games are selling like hotcakes.

Chris finally finished J.R.R.Tolkien's book, "The Hobbit." He has a very good start on the first book in the Lord of the Rings trilogy. He is very sensitive to differences between the books and the movies of late. He and Mom are coming closer to finishing up Chris' work towards a religious award in Cub Scouts and that has pretty much taken up storytime for a bit. If he pushed hard, he could be finished within the week. We'll see how hard he pushes though . . .

Medically, Chris has been hitting a few speed bumps. He has had a few brushes with diarrhea and nausea, but no vomiting. He hasn't eaten much but when he does lately, it's been grilled cheese sandwiches. Those probably aren't the best for diarrhea but it's better than eating nothing. He has been taking in fluids pretty regularly though. His appetite seems to improve as the day goes on, but it's not great yet at any hour. Chris is also covered in bruises (mostly from his "dog-piles) and he looks pale. As usual, the energy seems to come in spurts: he can play hard for short periods of time, then needs do something quiet for a while (which is where the video games and reading come in handy). Nonetheless, it's good to have him playing with Greg and Genie; it keeps his mind and body busy.

Joke of the day -- What should you call a polite, friendly, kind, good looking monster? A failure.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, January 2, 2004 9:46 PM CST

Hi Everybuddy!

Chris finished another cycle of Irinotecan and was happy to have his mediport de-accessed. Chris received his fourth and last dose of Irinotecan in this cycle and had blood drawn for a blood test. His platelet level held from Wednesday's transfusion. Today's blood test results were: white blood cells rose to 2.1 (normal: 4.0 - 12.0), hemoglobin rose to 9.3 (normal: 11.5 - 14.5), platelets were 60 (normal: 150 - 450), while the ANC dropped to 800 (normal: 1400 - 7400).

One of the fun moments today was when one of Chris' little "groupies" came to the clinic for her blood test and basically spent the time smiling at him (she may be about four years old). Chris spent most of the time either reading the last chapter of "The Hobbit" (which he finished) or watching the movie "Galaxy Quest." Before he got hooked up for the infusion (there was an hour or so delay), he set a new record for scoring in hacky-sack ball (a weird version of baseball played with a hacky-sack in the waiting room). While he was hooked up, Dad went around taking down the clinic's extensive Christmas decorations and was accused of being the Grinch (the nurses weren't complaining though).

Once freed of the tubes and the clinic, the guys headed over to a place for lunch where Chris just basically picked at his very cheesy pizza. He also got another dose of Zofran. He gave Mom and Greg a call and learned that we could go over and pick up Greg right then. We did so and those guys basically played some video games, worked on the treehouse, and played "spy" games outside. At one point they came into the study and asked Dad if they could "sell" things out front (like a lemonade stand) so they could raise money for treehouse "stuff." When Dad asked about what kind of stuff, they hadn't a clue. He told them that he'd think about it when they had a plan. They came back with a plan fifteen minutes later; Dad gave them a lot of stuff that was already around the house that they claimed to have "needed."

Soon after Greg left, Mom called in to say that she was getting ready to leave her office. We decided to run some errands and go out to dinner. Chris also received a very cool package from Aunt Jackie and Uncle Bobby: some game hardware. Chris installed all the components all by himself as the newly arrived Mom watched. He thinks that they're awesome.

Joke of the day -- What is as big as King Kong but doesn't weigh anything? King Kong's shadow.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, January 1, 2004 9:12 PM CST

Hi Everybuddy!

This New Year's Day was a quiet day for Chris; he even slept in until about 10:15 a.m. He probably would have slept later but Mom and Genie compelled him to awaken. He ate an entire cinnamon apple for breakfast, but didn't fare so well at lunch. Today's highlight was focused on Peter Pan. Chris and Dad went to see the new Peter Pan movie (Dad thought more highly of it than Chris did), then later at night, we watched the Robin Williams movie "Hook." We also decided that we should read the original story to see what it was all about; there are differences in interpretation between the various Peter Pan movies.

Chris felt well throughout most of the day but had to take a break (and a Zofran) during lunch because of nausea. He attributed it being on chemo and driving around in the station wagon. Dad and he went to Sonic, a hamburger place, so that Chris could see what it was like to have a server come to the car on roller-skates. The gastric woes returned in the evening, when he had to deal with a bout of diarrhea. It is a common side-effect for him from Irinotecan.

Chris spoke with Grandma and Grandpa for a bit but it was an abridged version of their usual phone antics. He and Dad also did some shopping and finally found some things for which they had been looking for a while -- a quest of sorts.

Joke of the day -- If King Kong went to Hong Kong to play ping-pong and died, what would they put on his coffin? A lid. (with a joke like that to start the year, just think of what you have to look forward to throughout the rest of the year . . .)

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, December 31, 2003 9:23 PM CST

Hi Everybuddy!

Chris was happy to hear that today was his last dose of chemo for the year. He wasn't fooled a bit and understood that he'd be back again on Friday doing it again, but he enjoyed the humor. Chris' day was consumed at the Tampa Clinic since he not only received chemo, but also a platelet transfusion. Chris received his third dose of Irinotecan in this cycle and had blood drawn for a blood test. Not surprisingly, the platelet level had fallen to a hair's width from the transfusion point. Today's blood test results were: white blood cells dropped to 2.0 (normal: 4.0 - 12.0), hemoglobin dropped to 9.2 (normal: 11.5 - 14.5), platelets dropped to 21 (normal: 150 - 450) while the ANC rose to 1000 (normal: 1400 - 7400). Chris also appears to be very pale, but had enough energy to play.

Dad obtained a copy of Chris' bone marrow aspirate and biopsy test results: there was no evidence of disease noted. He also talked to the oncologist about Chris' moodiness (sometimes -- particularly at night -- Chris appears so frustrated, tired or worried about something that he is unable to describe) to see whether an antidepressant might be appropriate. The oncologist wants a psychiatrist to make that call; the two psychologists who have met Chris (both at school and the family psychologist to whom Chris was referred) will submit a report. Chris is fascinating because on many levels, he appears to be handling things quite well and has a well developed sense of humor. On the other hand, he has been at this for a very long time and perhaps the long term effects (or maybe even simply fatigue from the current treatment) may be taking its toll. It's difficult to tell what is normal under these extended abnormal circumstance from the possibility that Chris may need a bit of help in this department. Even the psychologists appear to have a difference of opinion; the school psychologist thought that there might be an underlying problem that might be better addressed by a family psychologist, who after meeting Chris 3 times didn't seem to think that he needed any help.

There were a few fun moments today. Of course Nurse Teri and Chris were at it again today with some of the most comprehensive pranks to date. Despite the pranks, they work efficiently together. It is because of relationships like theirs that Chris has maintained such a positive attitude throughout this all. The other fun things included two little girls (about four or five) who walked up to Chris at separate times, each speaking to him as if he was their long lost big brother. He barely knew one of them, but he and Dad do see them both from time-to-time. He was quite surprised but acted quite friendly to both of them.

Once the guys were able to leave the clinic (six hours later), they called Mom and then Greg in priority. We couldn't get in contact with Greg so Chris didn't see him today. They then headed off to McDonalds for some chicken McNuggets for the boy. Chris and Dad had a good time at home, playing with Genie a while and then playing some indoor soccer. Chris dabbled with a video game but then came back to the office, where he went surfing on the Internet to several kid websites.

Since today was such a drain on Chris (he even fell asleep during his platelet transfusion), we let him pick what to do for dinner. It came as little surprise that we headed out for pizza. We stopped by a few places on the way to pick up some medicines for him.

Chris mentioned to Dad that the year was about to end. He said that this year seemed to fly by and that he wondered why that seemed so. Wouldn't we all like to know the answer to that one? We do wish you all a very happy, healthy and safe New Year.

Joke of the day -- What do you do if King Kong sits in front of you at the cinema? Miss most of the film.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, December 30, 2003 9:19 PM CST

Hi Everybuddy!

Once again, Chris spent a large part of his day at the Tampa clinic. He had some nice company though: his friend, Christina. She looks even stronger than the last time the guys saw her; she's even eating again. The two friends ended up watching the movie, "Pirates of the Caribbean." Christina had never seen it before and Chris likes it so much that it doesn't bother him to watch it again.

Chris was at the clinic in order to receive his second dose of Irinotecan in this cycle. It went without incident although Chris did seem to be fatigued by the end of the infusion. Today's blood test results (the lab machine was working again) were: white blood cells remained at 2.1 (normal: 4.0 - 12.0), hemoglobin dropped to 9.5 (normal: 11.5 - 14.5), platelets dropped to 35 (normal: 150 - 450) while the ANC hung around 900 (normal: 1400 - 7400).

Nurse Teri took care of Chris throughout most of the morning. These two routinely play pranks on one another, and today was no exception. This time some of the other kids got to see the fun as Chris inflated his face by holding his breath while she gave him an "arm hug" (took his blood pressure reading). She's a good nurse.

As soon as the guys left the clinic, they called Chris' friend Greg and tried to make an arrangement to pick him up. The two friends got together on the phone a little better this time. Not too long after Chris got home, Greg arrived. Today was a fun-filled replay of yesterday, but for a trip to the music room. Today the young guys went out front and played spies. Dad was working out front but quickly turned the activities on end and eventually caught both spies (they didn't see it coming). The boys also spent the better part of two hours "working" in the treehouse. First they cleaned it better than either of their bedrooms are probably cleaned. They then moved equipment in or around the treehouse and made plans to "procure" more equipment. Dad was called out to handle a wasp problem, but they really made a significant effort on really personalizing the treehouse.

Tonight was Mexican night, so we went to Chris' favorite Mexican restaurant. He ate rather well there. He still is off a few pounds from his last cycle of Irinotecan. Chris had lost weight over the holidays (doesn't everyone?).

Joke of the day -- How do you know when there is an elephant under your bed? When your nose touches the ceiling!

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, December 29, 2003 10:13 PM CST

Hi Everybuddy!

Chris had a very full day at the Tampa clinic. The blood test machine was "kaput," so Dad only knew that Chris' counts had dropped across the board and that there will probably be a platelet transfusion tomorrow.

He started another cycle of Irinotecan today after Dad and the oncologist reviewed his scan results. The results indicate a bit of marginal improvement in the size of the liver tumors but there are still some ambiguous results. The MIBG scan result indicated that "two discreet foci of increased activity persists within the region of the right liver lobe. These are unchanged in their appearance. [and that t]he slight increased uptake within the left liver lobe . . . is a little more uncertain as to its significance." The bone scan results are thankfully normal. The CT scans indicate that "the two right posterior liver lobe lesions are a little smaller than seen [previously, which] suggests that there has been reduction in the size of the suspected metastasis within the liver; there is a persistent less than 5 mm hypodense lesion within the right kidney." The other interesting news is that, at the time of the CT scan, Chris had a bit of collapsed lung tissue in his right upper lobe. We're still waiting for the bone marrow test results. The bottom line so far is that there is some questionable activity in his liver, remaining kidney, as well as a slightly elevated VMA (urine) result of 5.2 (range: 1.4 - 5.1). All-in-all, the results were sufficiently acceptable to allow Chris to continue with his present treatment program.

Dad also received word from New York that Chris is HAMA negative again, so theoretically, he could receive immunotherapy again if the conditions are determined to be right for such treatment. Dad also emphasized to the oncologist our interests in having a team of physicians focused on the apparent sanctuary that Chris' liver offers to the neuroblastoma. We're also interested in learning about medical progress that could benefit Chris, particularly radiation or surgical options which might now be available.

When Chris was finishing up at the clinic today and as his mediport was being de-accessed, he played a prank on a particular nurse (he has been known to "pick" on this nurse before). He made an awful noise while she was injecting Heparin into his mediport to ensure that it does not clog up. It really didn't fool her (she knows Chris well), but she did stop what she was doing, looked him in the eye and laughed. She then got another syringe full of water and squirted him as Dad cheering her on. He loved it, of course.

As soon as the guys left the clinic, they called Chris' friend Greg and made an arrangement to pick him up. They then made a quick shopping stop before heading over to Greg's house. Chris and Greg had an ambitious afternoon filled with video games, batting practice, adventures in the treehouse, playing with Genie, and goofing off in the music room (Chris still can't reach both pedals on the drums yet -- but he is trying). By the sounds of it, the younger guys had a great time.

Mom surprised Chris with some pizza tonight (Dad was not feeling well). He didn't know that she was bringing it in and toyed with him when, after her arrival (he was engaged in a video battle and could not turn around to look at her at the moment she walked in), he suggested pizza tonight. Tonight, he ate his first entire slice of pizza; every other time, he ate the "good part" but left the crust.

Joke of the day -- What's red and flies and wobbles at the same time? A jelly copter.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, December 28, 2003 9:07 PM CST

Hi Everybuddy!

Because we got in so late last night (about 2 a.m.), Chris slept in until midmorning. He awoke all by himself (no help from Genie this time) and spent the day chilling out and trying to get in contact with his friend Greg. They ended up playing phone tag and never did get to speak with one another. He played games and stayed out of the way while Mom and Dad put things in order after returning from our trip. Chris played with Genie throughout the day. Genie must have been excited about getting out of the van after such a long ride. Even though we arrived at 2 a.m., she ran and ran through the house, even at that hour. She was also ready for play throughout the day. On one occasion, Chris took her outside in the backyard where he played T-ball baseball. Genie was mildly interested in chasing that ball, but the opportunity to stretch her legs on a romp throughout the entire backyard beckoned stronger. Chris just received a T-ball set for Christmas, and so far, he's thrilled about it. Due to his lengthy treatment history, he has not had any significant opportunity to learn how to play baseball. He's hoping that the T-ball setup will help catch up his skills to those of other nearly 10 year old boys.

Chris managed a "saucy" conversation with Grandma and Grandpa, which if it hadn't been accompanied by a lot of laughter on both ends, might have resulted in him getting "grounded." Grandma is a big girl and knows how to handle herself. Chris also spoke with Uncle Tom and Cousin Jane, who called in from France on an unusually clear connection. Chris wasn't as talkative as he usually is with those two for some reason. They sounded great though.

We left home twice today. On one excursion, we went to see our friendly neighborhood pharmacy team (they really are). As usual, Chris gave the pharmacist an update on the latest movie that he's seen (in this case, the "Lord of the Rings: Return of the King"). We also shopped at the supermarket. After dropping off the groceries at home (Chris helps to put many of them away) and walking Genie, we went to dinner at the Outback Steakhouse; Chris said that he was "dreaming" of their macaroni and cheese kid's meal.

Joke of the day -- True story: there is a colony of peacocks, allegedly escapees from nearby Busch Gardens, in a neighborhood near the Outback Steakhouse. Dad had to brake for a peacock as it crossed the street. That of course led to the inevitable question: Why did the peacock cross the road? To prove he wasn't chicken.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, December 28, 2003 8:29 AM CST

Late entry from Saturday, December 27, 2003

Hi Everybuddy!

It was a long drive but the van worked quite well and we shaved about six hours off the trip arriving in Tampa thirteen hours after leaving Lexington, KY. Chris mostly read (The Hobbit), watched movies (The Lord of the Rings I and Pirates of the Caribbean) during the daylight, and played video games at night. He is an excellent traveler. Dad and Mom shared the driving duties.

Joke of the day -- What part of a fish weighs the most? The scales.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

www.caringbridge.org/fl/chrisbecker

Friday, December 26, 2003 9:08 PM CST

Hi Everybuddy!

Chris had a quiet day today and paid another visit to the Kentucky Children's Hospital. As usual, it started early. Chris seemed disinclined to get out of bed today, even with Genie helping Dad to awaken him. Once he got going though, he was up and moving. Blood was drawn for the routine blood test. His counts were: white blood cells rose to 2.1 (normal: 4.0 - 12.0), hemoglobin rose to 10.4 (normal: 11.5 - 14.5), platelets were 75 (normal: 150 - 450) (thanks to Wednesday's transfusion), while the ANC rose to 966 (normal: 1400 - 7400). There was apparently a possibility that Chris should have started G-CSF on Christmas Eve, but that news didn't get communicated to us. Because his ANC is rising on its own, we'll hold off on that until his blood counts are checked again at the Tampa Clinic on Monday.

The blood counts were good enough today that Chris didn't need any transfusions, so his mediport was de-accessed. After waiting a few hours for the blood test results (the sample had to go to the hospital's central lab due to the holidays), he was released. Chris went around thanking everyone and giving every medical person that he saw a happy face pin. One nurse told him that she was hoping that he'd give her a pin. As soon as she received it, she immediately put it on above her security badge so she could always have it with her.

After the clinic visit, Dad got Chris some chicken McNuggets (he was hungry), then the two of them shopped for the book, "The Hobbit" (which Chris is now reading) and a new tape for his newly acquired video camera. He says that he wants to make some sort of a movie with Greg.

Once back at Grannylin and Granddad's home, we tried to get two of the cousins together, but it just didn't work out. We took a break to retrieve our camper/van from the repair shop, so it seems that we'll be heading back to Florida on time after all. Chris spent much of the afternoon either reading, playing video games with either Mom or Dad, or playing with the dogs. It was a relatively quiet afternoon, but nice. He also took a little video footage of Granddad until the camera's battery died. It's drawing what we hope will be a good charge now.

We took a break with Grannylin and Granddad and headed out to a nearby German restaurant. They hadn't been to this restaurant before but will make it a regular hangout soon. The food was good. For some reason, Chris, who normally much prefers to be cold to being hot, got to shivering in the restaurant so much that we were becoming a little concerned. He happened to be sitting close to the kitchen door, and Mom (who felt a strong draft coming from that direction everytime that door opened) thinks that got to him. Fortunately, he didn't have a fever and although apparently chilled to the bone, was able to completely thaw out after taking a nice warm shower once we got back to Grannylin and Granddad's house. There was one detour on the way home (the car heater was working, so Chris wasn't frozen at that point); Granddad drove by a huge home that was completely lit up with tastefully beautiful Christmas display. It was very well done.

During story time at bedtime, Chris orally explained to Mom the part of "The Hobbit" that he's read thus far. It too varied a little from Tolkien's actual story but it was fun and he got the gist of it (even if the names of the some of the characters changed to things like, "Maryhadalittlelamb" because he couldn't remember their actual names).

We learned last night that Uncle Brian has not been feeling well, so we hope that he's back up to snuff soon.

Sadly, our visit to Kentucky must end tomorrow morning, when we'll have to head south again. It's been a wonderful visit and it sure was nice to see everybody up here again, but Mom's got to get back to her office on Monday, and Chris has to get back to his clinic then as well. Don't look for an update tomorrow night because we're likely to arrive home too late to be able to do it upon our arrival.

Joke of the day -- What would a barefooted man get if he steps on an electric wire? A pair of shocks.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, December 25, 2003 8:28 PM CST

Hi Everybuddy!

It was a quiet but exciting day for Chris. Of course he was one of the first people to wake up in the house. He patiently waited for all the "older" people like Mom and Dad to catch up with him. In all fairness, he did eat a good breakfast and took his medicines before all of the family moved into the living room, where Santa had made an appearance at some point during the night. This year, Chris handed out the gifts to everyone and did a good job. It may come as no surprise that Santa seemed to have favored him. Chris taunted Mom, who was sitting near his pile by pretending that certain gifts were for her, when they were really for him (don't worry, she didn't get a lump of coal this year). Everyone had a good laugh.

Thankfully, Chris has not manifested any symptoms of anything and was in excellent shape to enjoy the day playing with the dogs and with the parents until . . . Uncle Steve and Cousin Ryan came over during the afternoon to visit. Chris and Ryan did everything from playing video games to playing with the dogs on several occasions to playing chess. The latter was interesting as Chris was coaching Ryan; Ryan eventually won. The two had a really good time and they hope to get together again tomorrow.

Chris had some interesting high points on the phone too. He spoke with Grandma and Grandpa of course, but he also spoke with some of his relatives in Germany. He didn't get to speak with Lisa again, but we'll try her again later.

Chris asked for some Zofran before dinner, but he finally decided against taking it. He had dinner, although not with his usual appetite. He managed a little Un-birthday cake though. Chris was fine at bedtime.

Joke of the day -- What did Santa say when he was a pirate? Yo ho, ho.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, December 24, 2003 9:01 PM CST

Hi Everybuddy!

Chris had another early start this morning since he had to go to the Kentucky Children's Hospital for a routine blood test. When Chris and Dad headed over to the hospital, Chris had a camera in hand to take pictures of the marvelous music sculpture located in the lobby. We saw it on Monday and just "had" to have a photo of it. The team on duty was marvelously friendly and the oncologist treated Chris as if he was one of her "own" patients. He really felt comfortable around her and the nurses. Blood was drawn for the routine blood test and a "type and hold" blood test, just in case he needs a red blood cell transfusion on Friday. Although we couldn't get a hard copy of the test results, his counts were something along the lines of: white blood cells dropped to 1.6 (normal: 4.0 - 12.0), hemoglobin dropped to 9.8 (normal: 11.5 - 14.5), platelets were 27 (normal: 150 - 450), while the ANC was unknown (normal: 1400 - 7400). There were some computer glitches. The doctor decided to give Chris a platelet transfusion and also ordered a "type and hold" blood test for red blood since Chris' hemoglobin (oxygenated red blood cells, which provide energy) factor had dropped again.

The guys had a few hours to wait until Chris' platelets were ready for transfusion, so they watched a movie in the hospital's close circuit TV and read books. Chris read "The Fellowship of the Ring." The transfusion went without incident. After all that "hospital stuff," the guys went to McDonalds for a late lunch before stopping at a place to get some batteries. The traffic was heavy but it kept flowing despite all of the last minute shoppers and snow flurries.

Once home, the afternoon was tied up with visiting, playing with the two dogs, and playing video games. Chris, Mom, and Grannylin went to a Children's Mass, during which some of the local children acted out a skit based upon the birth of Christ.

Chris experienced a bit of what he described as upper digestive tract cramps during dinner but it passed an hour later. He was tired and quiet from the time he returned from the hospital throughout the afternoon and evening though. We were all concerned since the flu has obviously been going around everywhere, and three out of four of his local cousins have been ill this week. Chris seemed otherwise fine at bedtime though, and we'll try to keep his immune system up as much as we can. Since he's on discharge orders from the hospital due to the platelet transfusion, there is less "wiggle room" if Chris feels poorly; hospitalization is probable if he should burn a fever. We'll cross our fingers and hope that nothing will come of it.

Before nodding off to sleep though, Chris checked the status of Santa's flight on the NORAD webpage. As of bedtime, Santa was making his way across South America. He also noted the picture of the television reporter in Alaska who got knocked down by Blitzen the Reindeer the other day. Chris knows from watching the movies, "The Santa Clause" and "The Santa Clause 2," that not all reindeer are particularly friendly to humans. Although Chris knows that the guys in the malls across the country aren't Santa, he also knows that the real guy is very busy tonight.

Joke of the day -- A chicken crossing the road is poultry in motion.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, December 23, 2003 10:17 PM CST

Hi Everybuddy!

Chris had a great day today, although it didn't really come off as planned. Today was supposed to be the Kentucky cousins get-together. Illness and prior commitments accounted for the absence of two of Chris' cousins. Cousin Nicholas and Uncle Dave came over and joined us to watch the movie, "Lord of the Rings: Return of the King." We all enjoyed the movie; it was quite an epic, lasting nearly three and a half hours.

After the movie, we met Cousin Ryan and Aunt Pat at a nearby bookstore. Chris bought the first book in the Lord of the Rings trilogy so he can see where the movie varies from the book. Chris has never read the books, but Dad used to tell him the story to pass the time while Chris was in the scanner. Chris remembered it quite well.

On the way back to Grannylin and Granddad's home after the movie and shopping, we stopped off at our camper/van's "Kentucky parking place" (the local Dodge dealership) to pick up some sleeping bags for the planned sleepover. We also learned that a repair part had still not arrived. Oh well.

The three cousins finally converged at "party central" and began playing some video games. Not too long after our return to Grannylin and Granddad's house, Nicholas began to feel ill and had to head home. We hope that he's feeling better now (and that whatever it was that he has, Chris doesn't get it).

Chris and Cousin Ryan managed to have a great time playing video games and play sessions with the two dogs (one at a time). Eventually, we kicked off the Kid's Olympics, with Chris and Ryan on one team and Mom and Dad on the other. The kids clearly won the video game races (Mom didn't stand a chance there), tied with Mom and Dad in Twister, lost outright in Butthead and Uno, but won spectacularly in the flying turtle race, The winning team by overall points earned was -- the kids. Soon after, Granddad had some excellent pizza for dinner. As soon as dinner was over, we had our "Un-birthday Party" cake, sang the "Happy Un-birthday" song, and drew for Un-birthday Party gifts. The kids had the option of drawing presents out of a bag or picking one that had already been drawn. Even Grannylin and Granddad got to draw (it was their Un-birthday, too).

Chris had fun with Cousin Ryan, and got over his disappointment when it became clear that no one was able to spend the night here as part of the planned sleepover party. He had enough fun today and was happy to see his cousins, even if it was for a shorter time period than he had hoped. Cousin Ryan even took him outside for a few minutes as it snowed (under the pretext of "rescuing" Genie, who had been tied up outside for a few minutes in order to take care of her evening business but who got tangled up in the bushes). Chris really enjoyed the heavy wet snow falling and melting on him.

Joke of the day -- A man follows a woman out of a movie theater; she had a dog on a leash. He stops her and says, "I'm sorry to bother you, but I couldn't help but notice that your dog was really into the movie. He cried at the right spots, he moved nervously in his seat at the boring parts, but most of all, he laughed like crazy at the funny parts. Don't you find it unusual?" "Yes," she replied, "I found it very unusual. He hated the book."

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, December 22, 2003 9:19 PM CST

Hi Everybuddy!

Chris' day started early with a visit to the pediatric oncology clinic at the University of Kentucky for routine blood tests. Chris, Mom, and Dad headed over to that clinic, fully prepared for the expected tons of insurance and release paperwork usually needed to process new patients (Chris might not be new to all of this, but this clinic hasn't seen him in two years, so that qualifies him as "new" to it). The good advance work done by both our insurance company and clinic staff made that an unnecessary concern, so Chris and Mom were in the oncology section before Dad even had the car parked. The clinic was busy but efficient. The staff drew blood for a routine blood test and a full panel test, which tells us about how well his liver is functioning. His counts were: white blood cells dropped to 2.1 (normal: 4.0 - 12.0), hemoglobin dropped to 10.1 (normal: 11.5 - 14.5), platelets were 49 (normal: 150 - 450), while the ANC dropped to 1035 (normal: 1400 - 7400). The results of the full panel test are pending.

While at the clinic, we learned that it would be closed for Chris' next two required blood tests, so we were directed over to the children's hospital. There, we did all the coordination (both preregistration and at its outpatient station as well) for both Wednesday's and Friday's tests. It too went well. Everyone at the clinic and at the hospital were so friendly and were glad to be able to help out. They said that they send so many sick children down to Disney World, where local hospitals take care of the Kentucky kids, and they are more than happy to help this kid from Florida.

After all that clinic stuff, it was time for lunch. Chris actually had a decent appetite by then and wanted to have plain spaghetti, with the sauce on the side (a new thing for him). Deciding that the spaghetti wasn't slippery enough to twirl on his fork and spoon, Chris then decided to have it the way that his friend Allie likes to eat it: with butter. He liked it (and the garlic bread). The server was so nice that he presented her with his last happy face pin. Since he had handed out so many at the clinic and the hospital, we were out (yes, it's sad but true). As luck would have it, Dad discovered a party supplies store and found more, as well a few things needed for the upcoming "un-birthday party" for the cousins. Since hardly any of the cousins are around for each other's birthdays, we hope to celebrate an "un-birthday" party to try and make up for lost opportunities. We also spent quite a bit of time at the car dealership, trying to work out the mechanical repairs and gather information about our camper van's warranty. It took a lot more time than we had hoped, but they do seem to be interested in doing a good job. Dad calls that dealership our Kentucky parking lot, since it seems that whenever we come to up here, additional mechanical work becomes necessary (Mom thinks it has more to do with the colder climate rather than some sort of jinx).

Chris' appetite is sneaking back and he is eating, even if it's somewhat strange combinations. He had several hot-dogs, some cheese, and cinnamon apples for dinner. It's not exactly a "classic" dinner choice, but we do need him to eat.

Most of the afternoon involved Dad and Chris giving both dogs (although one at a time) a real workout. Neither dog seemed to get enough of chasing around a tennis ball. Chris did very well with Zack and was on the floor doing a mini-"dog pile." He's getting used to Zack and vice-versa. Meanwhile Mom and Granddad went out and shopped for some of the last things needed for tomorrow's events with the cousins. Later, Chris and Granddad played an Indiana Jones video game together.

Joke of the day -- Why did the teacher marry the janitor? Because he swept her off her feet.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, December 21, 2003 9:23 PM CST

Hi Everybuddy!

Given our recent long days, all three of us pretty much needed to sleep in today. But for Genie and Dad's early morning connection (Genie knows when she gets to go out), we did. The first event of the day was church; Chris liked the recording of the church bells and going to church with Grannylin and Granddad. After church and a short stop at home, we all went out for a nice lunch, during which Chris spent some time playing Hangman with Dad or listened to his new radio that is actually a pen (talk about a spy-like device!).

Dad started an experiment today with the two dogs. Genie (a female) and Zack (a male, owned by Grannylin and Granddad) are not getting along and Zack keeps barking at Genie. Dad put Zack into the same room with Genie, who was protected by her "clubhouse" (kennel); Zack was hanging out outside the clubhouse. At first Zack barked constantly. By the end of an hour, they were tolerating each other. When everyone got back together, we again tried having both dogs together in the den, with Dad holding Zack and Mom holding Genie. Again there was barking, but Genie had the "indifferent look" really going for her. We'll keep trying to get the two used to each other.

One thing the family has been doing is rotating the two dogs through independent play periods. Genie is faster at recovering a tennis ball, but Zack is more focused. Chris is still a bit shy of Zack.

Grannylin and Granddad took all of us out to get a special Christmas tree ornament to honor Chris. He recommended a dolphin with a Santa hat because it is friendly. It also had a big smile. Now it's got his name on it, too.

Tonight our little con man convinced Grannylin and Granddad that pizza was a great idea for dinner. We all went out with Granddad to get one and when Chris saw it, it "looked" different (from a different restaurant with which he was not familiar) and he was reluctant to have some. After the first bite though, he began inhaling it.

Joke of the day -- TEACHER: What is an island? Pupil: A piece of land surrounded by water except on one side. TEACHER: On one side? Pupil: Yes, on top.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, December 20, 2003 9:27 PM CST

Late entry for December 19 and entry for December 20, 2003

Hi Everybuddy!

This is an update for two days since Friday just never seemed to end. Friday started off well enough with Mom and Dad getting a good start toward loading the camper/van for the trip northward. Chris and Dad headed over to the Tampa Clinic for another blood test and the expected platelet transfusion. Chris needed it, too. His counts were: white blood cells rose to 6.1 (normal: 4.0 - 12.0), hemoglobin dropped to 11.0 (normal: 11.5 - 14.5), platelets dropped to 14 (normal: 150 - 450), while the ANC rose to 4300 (normal: 1400 - 7400). Because of the low platelet number, Chris and Dad moved right on into the platelet transfusion. Meanwhile, Mom remained home to finish packing and loading the van, as well as all of the last minute preparations for the trip to Kentucky.

Despite having awakened early and working steadily toward departure, we didn't leave home until about 1:45 p.m. -- a lot later than we wanted to, given the distance to be driven. Chris spent almost the entire trip playing Nintendo 64 games; the device was hooked up to the van's 12 volt system. Chris finally beat the witch in Banjo-Tooie. He would have stayed awake for the full nineteen hours of the roadtrip, but Mom and Dad convinced him that if he didn't at least try to sleep a couple of hours, he would be in no shape to play with his cousins at Saturday's family reunion. He then fell fast asleep.

The trip was very eventful, and the car is already back in the shop here in Kentucky. Just as we were crossing into Georgia, an engine warning light came on and there were noises coming from under the hood. We stopped in Valdosta, where a technician was gracious enough to diagnose the issue at the first Dodge dealership we could find. The technician determined that the van could still be driven, but the situation caused some concern and eventually warranted Mom and Dad to remove the engine cover inside the camper. Mom (who is not exactly the most mechanically inclined individual) learned how to use a socket wrench and ratchet. Unfortunately, another problem with the heater control switch developed, leaving us to choose through the night of wind chill and snow flurries between freezing with the heater off or hot as Hades with it on.

We drove straight on through the night (we briefly considerede waylaying in the Atlanta area, but kept on going) except for a few meals, a break to give Chris his last dose of chemo for this cycle, another break to remove the engine cover and track all the ignition wires in the engine, and later to take a two hour catnap.

Once we got to Grannylin and Granddad's house after 8 a.m. this morning, we unloaded the camper in order to get it in for maintenance at a nearby Dodge dealership which had Saturday service hours. It is still there. Chris spent the time hanging out with Grannylin and Granddad, while Mom and Dad dropped off the camper.

Chris seemed to still have energy this morning as Mom and Dad got ready to go to Uncles Steve and Aunt Pat's house for a family Christmas party. Chris was eager to get there and see all of his cousins again.

The party was a lot of fun, especially for us since we haven't seen most of these family members in about 2 years. We even got to speak to Uncle Brian, who called from -- Baghdad. The cousins pretty much enjoyed each other's company and are eager to all get together next week for a Kid's Olympics, Unbirthday party, and sleepover. They may also go to see the movie, "Lord of the Rings III," provided that Chris doesn't get tied up with being in the clinic all day.

Joke of the day -- PARENT: Why does your geography exam have a big zero over it? PUPIL: It's not a zero, the teacher ran out of stars, so she gave me a moon instead!

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, December 18, 2003 10:17 PM CST

Hi Everybuddy!

Chris had a cool morning today with Mom. Dad took her car up north for some warranty maintenance. Meanwhile Mom and Chris went to the Tampa Clinic for a routine blood test. His counts were: white blood cells dropped to 5.0 (normal: 4.0 - 12.0), hemoglobin rose to 11.1 (normal: 11.5 - 14.5), platelets dropped to 23 (normal: 150 - 450), while the ANC dropped to 3200 (normal: 1400 - 7400). Chris was told to discontinue the G-CSF shots, and he was cleared to go to school. Because of the low platelets though, Chris and Dad have to return to the clinic tomorrow for a transfusion.

When Chris showed up at school this morning, he walked in on his classmates taking a math test (ugh!). He had a good time today despite having to take that test. Most of his time though was for "fun stuff." While at school, Chris gave his teacher a couple of Christmas gifts which had a manatee theme (the school mascot is the manatee). When he returns from Christmas break, he'll be able to share information with her about the manatee that a friend recently "adopted" on Chris' behalf. Chris' manatee is named Merlin, and he has a lot of reading to do to learn about Merlin's habits and habitat. Who knows, maybe he'll be able to visit Merlin one of these days (thanks to the work of biologists, we know that he winters in Central Florida).

After returning home after school, Chris helped Dad with some of the preparation of the van for tomorrow's trip north, but mostly he watched TV, packed some of his things for tomorrow, and played some video games. He and Dad also played "tennis ball" with Genie. She was so happy to be playing that she even (sort of) "brought" the ball back to the guys so she could chase it again.

Several packages came in the mail for Chris. He has been dubbed a Wild Planet toy inventor again and so was provided with a couple of sample gadgets to test. He also received a present from his two cousins in Virginia, and our neighbor brought "awesome" night vision goggles that shoot darts (how cool is that?).

When Mom arrived home after work, she whisked Chris off to the church, where there was an Advent season reconciliation service. It was a beautiful service and Chris enjoyed it. However, he was very tired, so his head periodically fell over on Mom's shoulder. Still, he was listening enough to lift his head when he heard a quotation that sounded familiar (e.g., he recognized a quote from Dr. Martin Luther King, Jr.'s "I Have a Dream" speech). The church was very crowded, and even though there were 16 priests present, Chris missed his scout meeting (which took place at the same time in a different building on the church grounds). Upon leaving the church, Chris saw his den leader, who gave Chris the naturalist pin that he had earned.

Mom and Chris stopped by McDonalds on the way home. It was important that Chris got something to eat right away and have a sufficiently long time waiting period after his dinner before he received tonight's chemo dose. He ate fairly well and didn't have any problem with the chemo.

Joke of the day -- Teacher: Be sure that you go straight home. Student: I can't, I live just round the corner.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, December 17, 2003 9:30 PM CST

Hi Everybuddy!

Chris was actually able to eat breakfast this morning -- and attend school for most of the morning today before Dad picked him up to take him to the hospital for the "long" scan (The MIBG scan takes about two hours to complete). Chris had a good time with his classmates; this week is mostly oriented on fun as they approach the end of the semester. They did do some "serious" math work though.

While enroute to the hospital, Chris finished watching the second "Lord of the Rings" movie while eating some chicken tenders. The guys made it to the nuclear medicine scanner with just a few minutes to spare. Chris did such a good job with this scan that tomorrow's follow-up scan was canceled. Today's scan was a very long one, broken into two parts. The first component provides a view of his whole body in segments. Although Dad is not a radiologist (just a concerned parent experienced at looking over technicians' shoulders), it was apparent to him that there still remains activity in Chris' liver. There might even be new activity in his neck too, but we'll wait for the radiologist's report to find out what it all means. The second segment requires the scanner to move very slowly around his body, which enables the computer to assemble a 3D picture of his torso area. The last segment of the scan alone takes about forty minutes, all the while Chris had to remain completely still with his arms above his head as he lays on the cushioned board. His arms get so stiff, that Dad usually has to help him get up. The good thing about the scan is that he is able to watch TV; today he and the technician watched Disney's "Pirates of the Caribbean."

When not undergoing testing, Chris dropped off some books that he was donating to the hospital's teacher and gave her a Christmas present. He also turned in his idea for what the new hospital and a patient's room should look like. Some of the kids will be picked to be on the hospital review process -- a great idea! He was also able to see and fool around with one of his favorite hospital nurses and give her a Christmas present. She had one for him, too -- a bug in a box. He loved it, too.

Upon arrival at home, Chris set up a treasure hunt for Mom (it was for Mom's kind of treasure -- chocolate). He also played some video games and played with Genie on several occasions. Chris got his wish for dinner. Mom brought in a pizza, and Chris ate well before moving on to taking his nighttime medicines. After dinner, "Santa Chris" and Mom went to our neighbors' houses and dropped off some traditional holiday brownies (we're sure it must be a tradition somewhere in the world) and some presents. He was really a goof off heading home, and it was obvious that he got a boost from the red blood transfusion the other day.

Medically, Chris had a good day. He's had no pain from the bone marrow aspirate sites, nor any other significant problems. At bedtime, Chris asked for another dose of Zofran to help what he now describes as heartburn (chemo-related). He did not receive any at that time due to the timing of his previous dose, which had preceded his chemo dose this evening. Nonetheless, he said that he didn't think he was going to vomit, although he was uncomfortable, and could "hold on" until 11:30 tonight -- which is his next available time for it. Mom will check on him, and hopes to find him asleep then.

We were very sorry to learn today that one of Chris' favorite "big guys" has recently received some unfavorable scan results. Michael is much older than Chris but also has neuroblastoma. Chris has always been very impressed with Michael, who will be starting an experimental therapy soon. His family has asked that we keep him in our thoughts and prayers. Even though Michael is much older than most of his neuroblastoma peers, he has always treated the other kids with respect and consideration, and has endeared himself as a role model for many of them.

Joke of the day -- What is the difference between the Christmas alphabet and the ordinary alphabet? The Christmas alphabet has "no el."��

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, December 16, 2003 9:23 PM CST

Hi Everybuddy!

Chris and Dad had another day without breakfast because of his CT scan. He couldn't eat but had to drink three doses of contrast. Since the scan was scheduled for the morning, and because the first dose of contrast had to be taken four hours prior to the scan, Chris was awakened early this morning. He did great all day. The trip to the hospital went well and Chris watched the second Lord of the Rings movie en route. He's ready to see the third one now, which is set for release tomorrow.

For some reason, the hospital administration didn't have their act together, so Chris and Dad got tied up with administrative matters, but the clinic and insurance company were squared away, so they helped get the problem unraveled quickly. After a short wait, Chris was taken back to the CT scanner. There were yet more new people working there, but this new group was very professional. Dad doubts that they missed any aspects of today's scan, unlike what happened during the last testing cycle. Chris had to do one segment in which he had to lean his head well back, below the level of the table on which he was laying. Another dose of contrast was infused at the same time. Dad was concerned since it was a very uncomfortable position for Chris to maintain and because if he had to vomit (which he has done on several occasions when the contrast is infused), there was no place to go. Chris teared up a bit but handled that ten minute segment impressively. The technicians were very happy since he did it just fine the first time through.

The guys had a bit of a break during which they reported in up at the nuclear medicine department to verify the MIBG injection time (sometimes, the radioactive isotope arrives early, which allows them to get the injection and leave the hospital early). Chris then went into "Santa Chris" mode and gave a bracelet to his favorite nuclear technician, a nurse who gave Chris his stem cells several years ago during his second bone marrow transplant, and a nurse (now at the clinic) who has always cared for Chris as if he were her own son. They missed his teacher and his favorite nurse, Nancy.

They had enough time to feed Chris and watch more of the "Lord of the Ring" movie. They then went back to nuclear medicine to get the injection (which went well) and then back down to the MRI holding area, where Chris' mediport was de-accessed. There, they bumped into an anesthesiologist who hasn't treated Chris in three years. In spite of the passage of time, she remembered him well and the two started trading "comments" as if they see each other every day. She's a retired Navy doctor and can really dish it out. He thought that it was great.

The guys got back in time to take Chris to "God School," which was pretty much a Christmas party. Chris had a good time there, where he met his friend Greg. Due to an unforeseen conflict involving several of the boys in the patrol, Chris' Webelo den meeting was canceled tonight. He was a little disappointed, but not too much because it gave him time to play a game that he received as a gift from one of the Tampa Lightning players a couple of days ago.

Medically, Chris had a good appetite, which he fed after receiving permission to eat again. He had a nice day and did not have any pain in any of his bone marrow aspirate sites (as long as noone touched them). His dressings came off with no problems; there was no seepage at any of the sites. Given his recent platelet levels, that was good news. One of the CT scan technicians commented on Chris' bruises when he was holding his arms above his head. Dad explained his platelet history. She just shook her head and said that she can't get used to seeing kids like this, like they've been in a battle. Sadly, they are.

We were very sorry to learn today that the scan results of Chris' longtime friend, Allie, were sufficiently bad that she has to go on a very harsh chemo regimen immediately in order to try to save her life. Trooper that she is though, Allie still looks and feels great as she bravely goes into the fight again. Her family asks for thoughts and prayers. She is a very spirited girl and has been a real icon for a lot of kids fighting their cancers.

Joke of the day -- TEACHER: What is further away, Australia or the Moon? Pupil: Australia; you can see the Moon at night.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, December 15, 2003 9:25 PM CST

Hi Everybuddy!

Chris spent a very long day at the clinic -- about 10 hours altogether; he needed both platelets and red blood (the first such transfusion in fourteen months). He did not make it to school at all today, now was he allowed to eat or drink anything until about 3:30 pm. Chris went to the Tampa clinic for the usual routine blood test, a HAMA blood sample, a full panel, and to have his bone marrow sampled. He ended up also needing transfusions of both platelets and red blood since his counts were: white blood cells rose to 5.4 (normal: 4.0 - 12.0), hemoglobin dropped to 7.6 (normal: 11.5 - 14.5), platelets dropped to 17 (normal: 150 - 450), while the ANC rose to 3900 (normal: 1400 - 7400). Chris was told to continue with the G-CSF shots. Despite the low blood counts, he was also cleared to begin a five-day cycle of the chemo agent Temodal.

Dad initially took Chris to the clinic but had to be replaced by Mom since Dad had to chair a meeting at Chris' school. Mom got Chris through his platelet transfusion and bone marrow procedure. Dad came back shortly after the red blood transfusion began. Chris slept very soundly after getting his "sleepy medicine" for the bone marrow aspirate and biopsy procedures and took quite a while to awaken. When he did open his eyes, Dad had some chicken McNuggets waiting for him. Afterwards, Chris pretty much played his Gameboy game and listened to the first Lord of the Rings movie in anticipation of the release of third Lord of the Rings movie on Wednesday.

Mom said that he was a little grumpy (very rare for this experienced patient) when he was moved by wheelchair from the outpatient surgical suite to the infusion room. For the most part though, Chris slept a large part of the afternoon. He wasn't all that comfortable, especially as the evening wore one, because the bone marrow aspirate and biopsy procedure requires the doctor to drill into the front and back of his left and right hip bones (again -- it happens about every 3 months and has been going on since May 1999). His left front site was apparently tricky and had to get poked two or three times. It was giving him a little trouble tonight, making it difficult for him to move and get comfortable. Fortunately, Tylenol was good enough for pain control before he fell asleep at bedtime.

Chris took a moment out (with Dad pushing his pole around beside him) to hand out Christmas gifts to his medical team, which were well received. He had a great time playing "Santa Chris." All of the young patients received a present from the clinic for the holidays. Chris is now old enough now to have been presented with a gift card instead of a toy. He felt very grown-up when he learned that.

Once Dad and Chris were released from the clinic at 6:30 pm, they met up with Mom, who had just picked up the van from the repair shop. It should be in top condition for its upcoming road trip to Kentucky. While out, we ate at Mel's Diner (no relation to the real Mel's Hot Dogs). Chris remarked that their hot dogs didn't even remotely stack up to the real Mel's.

The cards, letters and even packages are beginning to arrive now, and it makes it fun for Chris to check on the mail every day. Thanks to everyone!

Medically, Chris had a nice day despite being drilled into and having to get blood products. He really doesn't think about the negative side of all of that. In fact, he likes the buzz that he gets from anesthesia so much that he actually looks forward to bone marrow aspirates (but he never asks to have such procedures done just for the fun of it). Fortunately, it usually wears off pretty well with no ill effects. The transfusions also took place without incident. Whew, what a long day though!

Joke of the day -- How much would it cost for Santa's reindeer? Nothing, they're on the house.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, December 14, 2003 9:01 PM CST

Hi Everybuddy!

Whew! Chris had quite a nice day today. It started a bit early and it took some concerted effort by Dad and Genie to get him up and going this morning. It started earlier than usual for a Sunday so that they could get to an earlier Mass. Chris had an invitation to have lunch with the Tampa Bay Lightning Hockey team players and their families. Even though it took a while to awaken him, Chris had a morning free of nausea, vomiting and diarrhea. His appetite wasn't spectacular but slightly better than it has been recently.

We all linked up back at home right after church. But for a few Christmas preparations on which Mom worked, we relaxed until it was time to head to the Lightning luncheon. The team members and their families (and most of the players were there) actually arrived a little after lunch, and they came bearing gifts -- like it was a family get-together. The player (Dan Boyle) who was assigned to sit with Chris unfortunately was ill and did not attend, but he had made arrangements with another player (Brad Richards) to cover for him. Additionally, another player and his girlfriend ended up without their sponsored family (who had to go to the hospital on short notice). As it turned out, Chris was linked up with that player, Chris Dingman. The two of them spent well over an hour together hanging out, meeting players, and talking about video games. Chris Dingman took Chris, who had received a Lightning hockey shirt, around the room, getting the shirt autographed as they "worked" the room. Meanwhile, Mom and Dad spoke with his gracious girlfriend. Chris was in a good mood and feeling fairly well at the time. We had so much fun that we were actually one of the last families to leave. Chris' comment was, "I never thought I could have so much fun talking to a hockey player." Duh! Chris Dingman and his friend were certainly very impressive, and the entire team were very approachable and down-to-earth. As a matter of fact, the head coach, Tony Tortorella, got up and said how honored he and the rest of team were to be supporting these children who are each fighting cancer. He said that even though the team had lost last night and they were having to come to grips with that, they all realized that in the bigger scheme of things, they were just "entertainers" and paled in importance and difficulty compared to the effort of the kids in their families in fighting cancer. The Lightning host cancer kids every Christmas season and sponsor the children's hospital in Tampa. Even though Dan Boyle was not present, he sent a few gifts for Chris: video games, a cable that can link two of his games platforms together, and a team quality Lightning jersey, on which Chris Dingman helped Chris get autographs from all of the players. Chris said that each one the players that he met were awesome. We have to agree.

We came home and rested for a bit, and Chris tested his new games. In addition, there was a lot of Genie play. She got quite a work out, especially chasing her rope toy around. Later in the evening, Chris pulled out his hula hoop, and was able to keep it going for a good solid minute.

Medically, Chris didn't have any problems with nausea, vomiting, or diarrhea. He took his G-CSF shot without incident, although the band-aid was bloodied when he took it off a couple of hours later. His skin is still very pale, and despite his activity spurts, Chris remains generally quieter than usual. Still, he was in a good mood today.

Joke of the day -- Where can you find a singing cow? In a moo-sic video.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, December 13, 2003 9:16 PM CST

Hi Everybuddy!

Chris got up on his own and spent a leisurely morning playing games and reading, that is until Dad recruited him to work back in the shop building. Chris' mission: help Dad look for an item there that they both saw last week. They didn't find it and when Chris got tired, he went out into the camper and read while he rested. He also helped to straighten up the shop a little later in the morning. That mission had a dual purpose of giving Mom some time to get out and attend to her elf duties.

He ate more of his breakfast than he's been able to do in the past two weeks: one whole waffle. He also had a good-sized lunch of a grilled cheese sandwich and two hot dogs (he even asked for the second hot dog). Chris didn't do so well at dinner though, which was surprising since it was Chinese food, which he generally likes. All-in-all though, he's made some definite improvement in the appetite department.

Chris also helped Dad do some maintenance work on the camper since we're hoping to take it on a trip to Kentucky soon. Things were going well until Dad crawled under the van and noticed a seeping transmission cooler hose and some worn bushings elsewhere. We dropped the camper off at the dealership later in the afternoon in order to make sure it's safe for travel.

It wasn't all work for the boy. Chris played a video game that he hadn't played in a great while called Banjo-Tooie. Maybe he and Allie played it last summer. He is in the final stage and has been stymied by a "Quiz Show" just before the "Final Battle." The Quiz Show requires him to answer questions about things in the game. Until today, he has never been able to beat it. Somehow, despite not having played the game in many months, he correctly answered all the trivial questions. What a memory he has! He is now locked in the "Final Battle," fighting the witch to save the world.

Everything came to a halt this evening when it was time to drop off the camper for maintenance. After doing so, we went to dinner and just a bit of shopping, but we had cut that short when Chris' diarrhea problem flared up suddenly with a vengeance.

Medically, Chris didn't have any problems with nausea or vomiting. He made it through most of the day without diarrhea. Chris remains pale and generally quiet, although he does from time to time get a short burst of energy.

Joke of the day -- What do you get when you mix apples and spiders? Apple spider.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, December 12, 2003 10:28 PM CST

Hi Everybuddy!

Chris did not make it to school today. His time was either consumed in medical facilities or in traffic getting to them. Traffic was horrendous, which made the guys late for Chris' bone scan injection, which in turn almost made them too late for Chris platelet transfusion. In circumventing traffic problems, Chris and Dad made a tour of many residential roads, making it back to the Tampa clinic with only fifteen minutes to spare before the platelets expired (there is a narrow window of time when dealing with platelets).

His day started in an all-too-familiar manner, but Dad tried to head-off the nausea by giving the Zofran early. That, however, didn't work well today. Eventually diarrhea caught up with him, too. Chris went in to the Tampa clinic for the usual routine blood test. He dropped in all categories, including white blood cells and ANC (both refer to the strength of his immune system), despite getting the G-CSF leg shots. Today's counts were: white blood cells dropped to 2.1 (normal: 4.0 - 12.0), hemoglobin dropped to 8.2 (normal: 11.5 - 14.5), platelets dropped to 20 (normal: 150 - 450), while the ANC dropped to 1100 (normal: 1400 - 7400). Chris was cleared to go on over to his bone scan across the bay, but was told to come back to the Tampa clinic as soon as his scan was completed so that he could receive his transfusion. The effort in the clinic went more slowly than normal, too.

Once leaving the clinic, Chris and Dad got onto the interstate and immediately ended up in traffic. Fortunately, Dad diverted off of the expressway as soon as he could, and the guys took any route they could in order to get quickly across North Tampa. Mom called the hospital to let them know that Chris was going to be late. They were and consequently, the scan got a bit delayed after the mandatory two and a half hour wait between the bone scan injection and the scan itself.

During the wait, the guys linked up with Chris' "hospital teacher," and they talked about books that they've read recently. She gave Chris two Indiana Jones adventure books that are written in a format that allows the reader to select a variety of endings. She also told him about a very large bookstore that he had never before visited. After grabbing a quick lunch, the two guys went to that bookstore, where Chris found two more adventure books. He was very happy indeed.

Dad was able to watch as the bone scan took place. It looked good to Dad (but of course, he isn't a radiologist). For some reason, the new technician ran one part of the test twice. That in turn was enough of a delay to put the guys in a rush to get back to the Tampa clinic before the platelet transfusion. It was a rush, and of course it seemed like every major artery had huge traffic problems. After an hour and a half trip, the guys made it to the clinic only fifteen minutes before the platelets set aside for Chris were to expire. Hooking up his mediport to the transfusion line was something like a pit crew's activities in a car race. Chris also submitted a urine culture. He had done one earlier at home, but it had been accidentally left behind in the refrigerator. The guys later tried to pass off to Mom some cold "apple juice," but she's way to wise to fall for that trick.

The transfusion went well and Chris' mediport was de-accessed finally for the week. Afterwards, they linked up with Mom at home. We all pitched in loading the car and headed off to Mom's office's Holiday Party. It was stellar with a lot of laughing, a white elephant gift exchange and an ornament competition (one of ours won a prize). Everyone had a good time and Chris enjoyed the company of the other kids. In fact, Chris had a burst of energy at the party as he interacted with them, but he was definitely ready for bed when that time came.

Medically, Chris felt nauseated again for part of the day and stoically endured the weird and hectic ride back to the Tampa clinic. He didn't even tell Dad that he felt woozy then since he knew Dad had his hands full trying to find ways around the traffic jams. His appetite was adequate and he is holding his weight.

Joke of the day -- Laugh and the class laughs with you -- but you get detention alone. ��

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, December 11, 2003 9:37 PM CST

Hi Everybuddy!

It was almost a normal day for the kid today. Chris had a rough start though, so Imodium AD and Zofran ODT came into play early in the morning. Needless to say, he didn't eat much, but at least he didn't vomit either. Chris got to school a little late this morning as a result of having been "detained" in the bathroom. He finally got his inertia going in the right direction. Mom dropped him off at school since Dad was working on auto maintenance matters at the time.

Chris' school day was apparently good though. The teacher remarked to Dad after school that Chris really tries when he is in class. It must be very hard to constantly trying to catch up with the lots of missed classes, especially when he's doing it while simultaneously dealing with stomach cramps, diarrhea, etc. Chris also brought home a beautiful handmade snowman ornament he made at school for the family. He did a very nice job.

On the way out from school, the guys walk through the church area located next to the school. The minister delights in handing out candy to kids after school. He has thinning hair on the side of his head and "fuzz" on the top. Somehow, he knows Chris by name (Chris secretly sneaks in candy donations for the "Candyman" periodically). He joked today with Chris that they were beginning to have similar hairstyles and -- he was right! Chris had a real laugh with that one.

Dad and Chris headed right for home since Chris had homework to do before his appointment with the psychologist. He did an excellent job on his math. He then played some games until it was time to depart. Mom linked up with us at the psychologist's office, which isn't too far away from Mom's office. She first spoke with all three of us, then spent some time with just Chris. She admitted amazement at his good mental attitude and says that he is a very caring and sharing individual. She said that Chris was the only child that she's met who, when asked what he'd want if he were granted three wishes, wanted nothing for himself. She will check in with school's psychologist to determine why the referral was made since Chris seems to be functioning well, especially in light of all that he has been through.

Before heading home, we stopped by a nearby mall for a bit of shopping. The shop owner so enamored with Chris that she gave him a cute stuffed snowman. He gave her a happy face pin as we checked out. She did something that no one has ever done in all the time that Chris has been giving people happy face pins: she wrote his name on the very top of the pin so that she would remember him every day. He was impressed and even gave her a hug.

Medically, Chris had his usual morning of nausea, vomiting, and diarrhea this morning, but it just seemed to drag on for the kid. It made him late for school by a few minutes even though he got up earlier than normal. He tries. He is still smiling though. Tomorrow starts the upward climb of the roll coaster ride known as scan week: he'll begin with a bone scan of his body.

Joke of the day -- Why were the teacher's eyes crossed? She couldn't control her pupils. �

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, December 10, 2003 9:37 PM CST

Hi Everybuddy!

It was another whirlwind clinic day for Chris. He had another really rough start this morning, having had to demonstrate (again) that he can handle both diarrhea and vomiting at the same time twice. He managed to "lose" his meds after the second bout and had to get re-dosed. He seemed to perk up a bit before the guys left, but he didn't eat much.

Despite Monday's transfusion, Chris' platelet level dropped down to below the transfusion point again -- this time down to 17. As there was some sort of doctors meeting everywhere today, Chris' best choice for receiving the transfusion at a halfway reasonable hour was to get back to the Tampa clinic by about 11:30 a.m. and get his platelets before the doctor left for her meeting. He ended up only going to school for about two hours today.

Today's counts were: white blood cells rose to 2.8 (normal: 4.0 - 12.0), hemoglobin rose to 9.9 (normal: 11.5 - 14.5), platelets dropped to 17 (normal: 150 - 450), while the ANC rose to 1600 (normal: 1400 - 7400). The increase in the WBC and ANC were probably as a result of Chris getting G-CSF. Chris was cleared to go to school but was told to come back within two and a half hours. So, Chris went to school late, then left school early to get back in time for his platelet transfusion. He was in school long enough to do some writing, math and music with his classmates. When he left, the teacher hadn't assigned any homework yet, so Chris told her that he would finish a story that he had started; she said that would be fine.

The second clinic visit went like clockwork, and he got his seven units of platelets without incident. He mostly played with his GameBoy SP. Chris' mediport remained accessed since the skin over his mediport is beginning to look like the surface of the moon (it's been poked so many times) and because on Friday, there is a great need for haste. Chris has to get his blood test done in Tampa quickly before traveling across the bay for an injection prior to his bone scan.

After today's clinic visits, the guys went back to Chris' school, just on the off-chance that they could get Chris' "real" homework assignment. Unfortunately (for her), his teacher was still there working, so Chris picked up his homework assignment. The guys also made two stops for things that were needed to get the camper ready for our upcoming road trip to Kentucky. Once home, Chris played a game for a half an hour and then did his math homework. He told Dad that he'd wait to do the writing back at school until Dad reminded him that twice, Chris told the teacher that he'd write it at home. After a little grumbling, Chris went off and wrote a cute story about Santa fighting a mutant Santa. It was lengthy, detailed, and sort of funny in a Chris sort of way.

Later Chris helped Dad make some brownies for some upcoming Christmas parties and played some more games. He didn't get to enjoy his quiet dinner at home since he was hounded by nausea and diarrhea again. He told Dad that he REALLY didn't like cancer anymore.

Medically, Chris felt nauseated on and off throughout the morning and had two bouts of vomiting. His largest concern is still the diarrhea. His appetite is slipping, but he is holding his weight and he is trying to keep drinking fluids. He is pale and tired, but still manages a smile or two.

Joke of the day -- What did the farmer give his pigs for their birthdays? Hogs and Kisses.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, December 9, 2003 9:34 PM CST

Hi Everybuddy!

Chris had a rough start today. As soon as Dad came in from walking Genie, he saw Chris make a dash from his bedroom to the bathroom. The poor kid needed both Imodium and Zofran. Actually, he "lost" both doses not but a few moments after they were given, so he actually got them twice. Once Chris finally got out of the bathroom, he was all right but for being tired. He reported that he hadn't gotten much sleep last night. He looked tired all day.

Somehow, Chris got to go to school at first bell, just like a normal kid. He had a math test today. As soon as he finished, he put his head on his desk and dozed off. His teacher is wonderful and we keep her updated with what is going on with Chris. His classmates are also very understanding.

Once the guys got home from school, Chris took a short break and then started in on his homework. He did that pretty quickly and then fell asleep for a while but woke up on his own just in time for God School. There, he was able to hang out with his friend Greg for a bit. When Dad picked up Chris after "God school," they stopped off at a nearby used bookstore where Dad searched for a particular book. They didn't have it, but true to form, Chris found one for himself that he purchased. While checking out, a lady came from the back with very short hair. She said hi to Chris. They both realized that they knew each other from shopping at the same supermarket. She had just finished all of her chemotherapy and now her hair is growing back. She and her husband have seen Chris on numerous occasions and apparently said hi to him. The guys then headed home and waited for Mom's return. Dad and Chris and put the finishing touches on a project that Dad's been working on for Mom -- just in time for it to be ready when she got home.

Since the guys had been working on the project, dinner wasn't ready. It would have been slow in coming anyway. Because it was late and especially because Chris wasn't feeling well, we let him decide what to do about dinner. He suggested a local restaurant, and so we went.

The postal carrier brought Chris another fun card from honorary "Aunt Cathy," in which she had included a card that she had previously sent but didn't get delivered the first time for some reason. The second time was the charm.

Chris and Genie had a little "dog pile" action tonight. Genie actually pinned Chris to the bed once by sitting on him. Chris eventually got loose and nudged her off the bed.

Medically, things were pretty rough this morning with Chris suffering from diarrhea and vomiting at the same time. Somehow, he managed to focus on getting things taken care of in a neat and orderly fashion. It is the sign of a true veteran. Chris's athlete's foot is flaring up again on one foot (maybe because of the low blood counts). His underarm rash is still present but not bothering him.

Joke of the day (a real humdinger) -- What is the difference between a teacher and a train? The teacher says "spit out your gum" and the train goes CHEW CHEW.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, December 8, 2003 9:18 PM CST

Hi Everybuddy!

All we can say about Chris' day was, "Whew!" It was another big clinic day, much to our surprise again because of platelets. Despite Friday's transfusion, Chris platelet level dropped down to a mere 6. Needless to say, he had another afternoon transfusion. Today's counts were: white blood cells dropped to 1.9 (normal: 4.0 - 12.0), hemoglobin dropped to 9.4 (normal: 11.5 - 14.5), platelets dropped to 6 (normal: 150 - 450), while the ANC dropped to 800 (normal: 1400 - 7400). Chris was cleared to go to school and was told to restart his G-CSF shots. Dad also received the last scheduling detail for the next set of scans: the bone scan will take place this Friday, while most of the other tests will be next week. Next week will also be a week of chemo: Temodar. We're not sure of the chemo schedule thereafter.

Chris went to school late due to the morning clinic visit, then left early since he had to return to the clinic for his audiology assessment this afternoon. His hearing is stable and in some degrees physiologically better than compared to last years results. As you can tell, Chris spent most of the day in the clinic, but was able to spend about four hours at school. Chris didn't have much to report about his time in class today.

Chris pretty much was pale and tired for this afternoon's clinic visit. He had actually fallen asleep during the mechanical part of his hearing tests, which doesn't necessarily require the patient to be awake. He and another little girl about his age watched Chris' movie, "Turner and Hooch" during the platelet transfusion. Since Chris finished his transfusion before the movie ended, we let the clinic borrow it for a while. Chris had some homework today but he asked to do it later with Mom tonight. He looked so tired, Dad said, "yes." When he worked with Mom on it this evening, Chris was still tired, but managed to explain his way through it.

Chris read a bit today and played his Gamecube for a little while. The guys stopped to look for some things for the Cub Scout engineering pin project but came up empty handed. Chris was too tired to even ride his scooter in the driveway.

Medically, Chris felt nauseous on and off throughout the morning but his biggest problem was diarrhea again. His appetite is still good thankfully. He is bruised, pale and fatigued, but otherwise in good spirits.

Joke of the day -- Why did the bear eat the tightrope walker? Because he wanted a balanced meal.

We're happy to learn that Allie is back home. She is even eager to get back to school. That's Allie personified.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, December 7, 2003 9:19 PM CST

Hi Everybuddy!

Chris had the usual Sunday, but with slight modification. This morning, Mom, Genie, and Dad all went in to awaken him. Genie was wild, maybe because she knew something different was happening. He got out of the house for the usual Sunday routine: church and lunch, but this time Dad joined them for lunch at Red Lobster. It was close to the eyeglass shop, which opened a little later. A certain boy and his dog destroyed Dad's glasses during a "dog pile" last night. Ok, Dad was an active participant in the "dog pile" at the time. Fortunately, the eyeglass shop had a repair part, so all is well again and Dad can see again.

Afterwards, we came home briefly. That's when Chris and Mom had their own limbo contest -- Mom took honors as "coolest Mom" for her low-crawling efforts, while Chris later obtained "ultra-cool" status for even-lower-crawling. Genie complicated things by nipping at the contestants as they worked their way through the limbo dance. Then all of us went shopping for a variety of things, including craft supplies for the competition at Mom's office to make an ornament out of an old CD. Chris came up with two very good ideas, which we implemented today. We'll see how they stack up against the competition in a few days. While at the supermarket, Chris decided to try for his shopping cart drivers license (don't ask). He did a reasonably decent job, so Mom signed the "license" which Chris created once we got back home.

Greg called Chris while we were out today, but we didn't pick up the message until after it was too late for the two to get together. He'll call Greg tomorrow to let him know what was up.

Medically, Chris felt nauseous a few times and is having some diarrhea more regularly (this is one type of regularity we wish he didn't have so often). His appetite is still good thankfully. Chris tires easily now and his skin is fairly pale right now, but the cooler weather doesn't seem to faze him at all. He has a big bruise under his arm that he can't explain, which makes us concerned that he may need more platelets again tomorrow. We'll see after tomorrow's routine blood test.

Joke of the day -- What do you call a cow that eats grass? A lawn moo-wer.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, December 7, 2003 7:21 AM CST

Late Entry from December 6, 2003:

Hi Everybuddy!

Chris awoke on his own and came over to get Dad just as quick as his feet would carry him, just to let him know that St. Nicholas had been here overnight. He found his shoes filled with candy. Not long after that, he found a new game for his Gamecube from Grandma and Grandpa, which they gave to him for being a chemo warrior. They, like others, help to keep his motivation up throughout his treatment. He called them up right away to say thanks. Of course that conversation moved right into joke time and all.

Once he finished some morning stuff, he started playing his new game until his friend Greg called. Chris was invited over to Greg's home for the afternoon, so the guys ate a quick lunch and headed over to meet up with Greg. Chris brought his new game and the guys played it, played with Greg's dog Sandy, and went bike riding. Chris had a great time.

Once home, Chris and Dad worked on the engineer pin. Chris is the "Guinea Pig" for the training that Dad's responsible for presenting to the den in January. One task was to make a bridge, so Chris made a truss bridge, using gum drops and toothpicks. It worked well, too, as it supported the weight of a D battery easily. Chris has actually earned the pin, but he'll do all of the tasks for the badge beyond just what is required. Chris also rode his scooter around the house a bit, too.

Chris received some neat mail from both Uncle Alex and honorary "Aunt" Cathy. He also received a thank-you note from the Tampa clinic for his donation of "Land Before Time" movies and kid magazines.

Medically, Chris felt nauseous a few times today and had some diarrhea now and again. His appetite is still good though.

The guys spoke with Allie's Mom; Allie is inpatient at her hospital now for tummy trouble. Allie's new protocol is tough. She's working through it, but it has been giving her trouble. We hope that she gets released tomorrow.

Mom was gone all day again today, this time because of Army drill. At bedtime tonight, Chris let slip his feelings about not seeing her as often as he'd like. He was in a perfectly good mood, listening to Mom read a short story taken from Frederick Douglass' autobiography. It included a couple of sentences about how much he missed his mother, who had also been a slave and had been separated from him while he was still very young. She could only see him once in a while, when she snuck over from the plantation to which she had been sold to visit him at night. Chris blurted out that he only sees his mom at night, too. Boy, that stung!

But he was in a good mood and as soon as the story was over, he soon changed the subject to his excitement over having "figured out" the St. Nicholas/Santa Claus deal. He understands that St. Nicholas is one of those "really good" saints (sort of like St. Patrick, but better) because he's got his own special holiday (it's a German tradition, not necessarily celebrated by most Americans, but we recognize it). But Chris figured out today that St. Nicholas is, in fact, Santa Claus. His reasoning was twofold: 1) the poem, "Twas the Night Before Christmas" talks about "St. Nick soon being there," and since it's about the night before Christmas, then St. Nick and Santa Claus must be one and the same person; and 2) because the movies, "The Santa Clause," and "Santa Clause 2" both have Tim Allen portraying Santa as a normal guy for most of the year, but as it gets close to Christmas, he starts needing to fatten up and grow a beard. And so, Chris has reasoned that December 6th (St. Nicholas Day) is really "Transition Day" for St. Nick to get ready to become Santa Claus for the rest of the world.

Joke of the day -- What's gray, weighs two tons, and puts you to sleep? A hypno- potamus.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, December 5, 2003 9:39 PM CST

Hi Everybuddy!

Today was a big clinic day, much to our surprise. Because Chris wound up with a big purple bruise at the site of today's G-CSF shot (ouch!), we expected a drop in the platelet level, but we did not expect it to drop all the way down to below the transfusion point.

We really wanted things to go well at the clinic today because Chris' class was going on a field trip to watch an IMAX film about sharks, and he really wanted to be there before they left. Things went extremely well but for learning that he needed a platelet transfusion. Today's counts were: white blood cells rose to 3.6 (normal: 4.0 - 12.0), hemoglobin dropped to 9.6 (normal: 11.5 - 14.5), platelets dropped to 17 (normal: 150 - 450), while the ANC climbed to 2600 (normal: 1400 - 7400). Chris was cleared to go to school and on the field trip. Dad also received most of the scheduling details for the next set of scans; they're set to take place throughout the week of December 15. We're not yet sure what impact that may have on his chemo schedule. He should be receiving oral Temodar by then. We'll see.

Chris sat in his infusion chair and worked on his homework throughout the entire chemo time today, but he also listened to the Disney movie, "Pirates of the Caribbean." It really is a great movie; he stayed focused on his studies and did a good job on his homework. Chris also donated all of his old "Land Before Time" movies, which the child life therapist happily accepted along with some neat kid magazines.

Things really did go extremely well at the clinic. When Dad called Chris' teacher on her cell phone (which she kindly gave to Chris previously for this contingency), he learned that the class was due to board the bus in about fifteen minutes. Despite traffic, the guys made it over to the school in ten minutes. Poor Chris tossed his cookies enroute though. As usual, he said that he felt great after he used his barf bin. Chris did a remarkably good job of moving through chemotherapy, mad-dash-car-ride, then school bus ride, then IMAX theater, then another school bus ride -- all with only 1 bout of vomiting. No bad at all -- Mom and Dad aren't so sure that they could have handled all of that, back-to-back, with such grace and style.

Since there is no doctor available at our clinic on Fridays, Chris and Dad had to go across the bay to the St. Petersburg clinic. Dad gave our insurance company a heads up, who got everything in place by the time Chris and Dad got there. Dad was a little concerned that Chris' class might be getting back from the field trip late (which would impact on the timing of the platelet transfusion), but they got back to school on time. Chris and Dad made it to the St. Pete clinic pretty close to "on time."

Chris and Dad got caught up on "things" at the St. Pete clinic (they haven't been there in quite a while), and were quite happy to learn that one of our absolute favorite nurses is getting married soon. Everyone there was happy to see Chris, as was he of them. Dad was told to stop giving Chris the G-CSF shot, at least until after his next blood test. Dad also learned that the doctor also wanted a bone scan done on Chris; it has not yet been scheduled.

On the way home, the guys stopped to get some more happy face pins (Chris handed out the last of them to two new nurses who helped Chris today). They also found a Christmas present for Genie. They contacted Mom at her office and pretty much decided that we should eat out since Dad spent the day going to and from clinics; nothing was really ready at home. Chris was very hungry, so he had some chicken McNuggets enroute to linking up with Mom at a barbecue restaurant.

Chris read a bit today and played his Gameboy too. When we got home tonight, the outside lights were on, and Chris rode his scooter around a bit, too.

Medically, Chris felt nauseous on and off throughout the morning. He vomited while enroute to school after receiving the chemo. As usual, he did a great job controlling his vomiting while the car was moving. He is a pro. He didn't really look like he needed platelets today, but the blood test results bore that out, as did the big bruise he has at his G-CSF shot site. He also had one bout of diarrhea, so that, not unexpectedly, has started up again. We hope that he doesn't lose any more weight.

Joke of the day -- What do you get if you cross an owl with a skunk? A bird that smells but doesn't give a hoot.

Happy Birthday to Grannylin (and to Chris' platelet donor today, who shares a birthday with Grannylin)!

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, December 4, 2003 9:15 PM CST

Hi Everybuddy!

It was another morning in which Genie just decided to crawl in bed with Chris and snuggle. She almost got into trouble since she was coming very close to licking off the Emla cream that Dad was putting on Chris' leg in order to numb it before the morning G-CSF shot. Dad just barely beat her by putting a Tegaderm patch over the cream before she got there.

Dad also was able to coax Chris into eating some sausage with his waffle. He finally remembered that he used to like sausage; any source of protein (and to some degree fat) is ok by us right now. Even still, his appetite was substandard.

Today's clinic visit basically centered on Chris and the little girl who loves Chris but won't talk to him. She was there with her Grandmother. Today she spoke more than we've ever heard her say before. She is about four years old. Everyone, including Chris, marveled at how well she colored and stayed between the lines. We also learned that she has a black and brown Dachshund. Well, Genie is black and brown, and one of the nurses has a black and brown Doberman, so there was a thought about having a black and brown dog day at the clinic some time in the future. Chris spent almost all of his clinic time doing homework. He and Dad worked on something that could be called pre-algebra; Chris did rather well.

After Chris was cleared to leave the clinic, the guys again headed right for school. On the way to his classroom, some of his classmates bumped into Chris on their way to peer mediation training. Peer mediation must be given priority at this school. Just as soon as Chris reported into his classroom, he was immediately released to go to training, even though he missed most of this morning's classes. Today, Chris was awarded his "Peer Mediator" T-shirt.

After school, Chris asked to go to McDonalds for a "dunch" (his new word for dinner/lunch). Even though he had a corndog for lunch (which he likes), he said that he was hungry. Since he's doing chemo now, Dad had no objection to obliging that request. The guys then headed over to another store to start getting things for the time when Dad will be responsible for instructing the Webelos on what they will need for their engineer pin projects. Today, Chris and Dad worked on two tasks: Chris made a kit prototype for a Morse code lamp and a block and tackle setup. Chris used his homemade block and tackle to lift Mom's briefcase and got an appreciation of the benefit of using pulleys to lift things.

One hallmark of Chris' day was a visit by our friend Les. Of course the two had to play the game, Butthead. In Dad's mind, everyone is a loser in that game, but Chris loves it (Les does, too).

After dinner, we were getting ready to call Grannylin (in advance of her birthday, which is tomorrow), when she called us (knowing that Chris was bound for bed soon). We sang "Happy Birthday" even worse than normal (Genie almost began to howl), then Chris told her how excited he is to maybe be able to visit her soon.

Chris has begun to wear his sandals when he plays his game with Genie on his flying turtle in the evening. She used to try and grab his feet when he would drive by. Because he's got the sandals on though, she now goes for - - - his rear end. It's funny to watch and he has a blast.

Medically, Chris did well handling his nausea but he didn't really eat well at breakfast, even if he did express some interest in the sausage. He also was having trouble retaining the dressing over his mediport, so the head nurse redressed that for him -- with his thanks.

Joke of the day -- First Man: have your eyes ever been checked? Second Man : No. they've always been gray.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, December 3, 2003 9:25 PM CST

Hi Everybuddy!

Genie just decided to crawl in bed with Chris and snuggle this morning. He got up out of bed once breakfast was ready though. Dad's not sure who is more wedded to Chris' bed: Chris or Genie. He didn't make it through breakfast without becoming nauseated though. The guys went to the Tampa clinic for a routine blood test and Chris' third dose of Irinotecan for this cycle. There were some interesting changes in all of his blood counts due to the three doses of G-CSF (the leg shots) that he's received so far. His platelet level is good because of Monday's transfusion. Today's counts were: white blood cells rose to 3.5 (normal: 4.0 - 12.0), hemoglobin dropped to 10.0 (normal: 11.5 - 14.5), platelets rose to 69 (normal: 150 - 450), while the ANC climbed to 2300 (normal: 1400 - 7400). Chris was cleared to go to school today. We still don't have a testing schedule for after completion of this cycle, but the medical folks are working on it.

Chris was basically in with a bunch of small kids who he didn't know but for one little girl who loves Chris but won't talk to him. Her Mom tells us that. Chris worked on his homework and watched some of the Disney movie, "Pirates of the Caribbean." It's a great movie and the nurses all wanted to watch it along with him. Things were very busy at the clinic though.

After Chris was cleared to go, the guys headed right for the school. They didn't find his class in their classroom, so they had to walk around looking for them. On the way to the Music Room, they bumped into Chris' teacher from last year, who is out for a semester since she had a baby during the summer. Both his teacher and her baby looked great; she was very happy to see Chris. Her baby has short soft hair and everyone to include Chris joked that it looked and felt like Chris' new hair (he is now both losing and gaining hair at the same time -- go figure). They eventually linked up with Chris' classmates.

After school, the guys headed right for home since Chris still had one part of his homework to complete, which he did dutifully. Not long after he finished, the guys headed over for Chris' appointment with the "eye doctor." This guy is funny and he remembered Chris from a while ago. Chris and he really went at it to the point that the doctor had to stop the exam a couple of times because of the laughter. The end result is that Chris' eyesight is 20/10 (very good) and the doctor didn't see anything but good things after dilating Chris' eyes. There did not appear to be any ill effects from Chris' cancer or the years of treatment that are showing up in his eyes (yeah -- some good news!)

The guys didn't go straight home though upon release from the eye clinic because of a need to stop by the pharmacy again. This time Sally (Chris' angel in the insurance world) and the pharmacist had things squared away -- thanks to both of them! Once they started for home though, they got a hold of Mom and decided to go check out a store that is only open for business with the general public periodically. Unfortunately after fighting rush hour traffic to get there, we learned that it had closed just before we arrived. Ah well, we'll try again; we've never been there and are simply curious about it. Driving over there though set us up to try a pizza place that someone had previously recommended to us but we've never visited before (yes, it's true -- we have not been to every pizzeria around). Chris decided to stay with his local standbys, Pizza Hut and Papa John's.

Medically, Chris hit a speed bump at breakfast and then later as he was taking his nighttime medicines, with nausea. Fortunately, Zofran helps him out greatly, so there were no further ill effects beyond that woozy feeling. Everything else went quite well today. He didn't even complain about light after his eyes were dilated.

Joke of the day -- What kind of vegetable goes "ding-dong, ding-dong"? A bell pepper.

On a much sadder note though, we learned today that a beautiful 8 year old little boy, Austin, who had been diagnosed with neuroblastoma in 1998, recently passed away. Although we had never met, the families kept track of each other through the Internet. He did not have an easy time of things, but he had an indomitable spirit. He was one of our heroes.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, December 2, 2003 9:16 PM CST

Hi Everybuddy!

Chris really tried to sleep in this morning but was unsuccessful; we can't blame him for trying though. The guys' first stop in the morning was the Tampa clinic for his second course of Irinotecan. Chris saw his friend, Christina, who just looked wonderful today. She was there for an infusion, too. The two watched Christina's Spongebob Christmas movie, followed by Chris' movie, "Matillda." Chris' main focus was doing his homework, so he didn't really pay all that much attention to the movies actually. He did an excellent job on the homework. In fact, when Dad picked him up from school later in the afternoon, he learned that Chris was actually a little ahead of his class, despite having missed the entire day yesterday; the teacher provided Chris with the entire week's worth of schoolwork.

Things went very well at the clinic, so Chris was able to get back to school for some of the morning period. He also was able to take two (accelerated reading) AR tests today; he passed and now has enough AR tests under his belt this semester to qualify for an AR award.

Once the guys got home from school, Chris went into the "crash mode" to finish one aspect of his homework that he wasn't able to complete at the clinic. During doing all of that, Dad got a call from the plumber to see if he could install the water softener this afternoon -- at about the time that Chris was supposed to go to "God school." Fortunately, Greg's Mom volunteered to take Chris to that class. Chris thought that it was so cool that he got to ride to "God School" with Greg! (Thanks Mary Beth!) After watching how to install the water softener, Dad will be able to do the next one.

Dad picked up Chris from school, then the two stopped off to get some salt for the water softener (unsuccessfully). Chris also got a memory card for his new Gamecube, so he was happy. The guys then headed home so that Chris could change into his Cub Scout uniform and put the finishing touches on his version of what could be his patrol's song, cheer, and yell. The patrol song is sung to the music of Queen's "We Will Rock You." The guys in his patrol seem to like Chris' creations, but for one boy is going to come up with an alternative recommendation. Chris led the patrol in the songs, yell, and cheer.

In "celebration" of Chris having made his AR goal for this semester, he asked to go to his favorite Mexican restaurant for a late dinner (after "God School" and the Cub Scout den meeting). He read his new book while waiting for his meal.

Medically, things went well. Chris started on his G-CSF shots again since his ANC plummeted. He'll be getting those shots for a while. He'll get another routine blood test tomorrow, too. His underarm rash is still there unchanged. He has no additional side-effect problems.

Joke of the day -- (here's one for Shelby) -- Where does okra come from? From Okrahoma.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, December 1, 2003 9:17 PM CST

Hi Everybuddy!

Genie and Dad woke up Chris "big time" this morning. He didn't have a prayer of a chance for staying asleep; Genie was all over him, getting in some good licks. He loves it, too. The guys headed for the Tampa clinic for a routine blood test and to start another cycle of Irinotecan. A full panel blood sample was drawn as well. Surprisingly, all of his counts had dropped. His platelets dropped so close to the transfusion point that he got the transfusion anyway. Today's counts were: white blood cells dropped to 1.9 (normal: 4.0 - 12.0), hemoglobin dropped to 10.2 (normal: 11.5 - 14.5), platelets dropped to 22 (normal: 150 - 450), while the ANC dropped to 500 (normal: 1400 - 7400). The doctor said that he could have gone to school, but he was tied up with infusions/transfusions well into the afternoon, well after school ended. She also took a look at Chris' underarm rash and has him trying some powdery stuff to try to clear it up.

Chris saw his friend, Christina, who looks and acts even more like her usual perky self, as she continues to recover from her recent transplant. Christina gave Chris a German Advent calendar (they still know their German relatives, too). Chris also saw another friend, affectionately known as Taylor 2, who is doing quite well and moving herself along by herself in her wheelchair. Chris had to tell her all about the family camp opportunity coming up this winter; she may go there too (as may we).

The guys took a short break between the chemo and platelets for a lunch break. Naturally they went to nearby Mel's Hot Dogs. Chris told Mel that his dogs were definitely better than Nathan's Hot Dogs. The kid has good taste. Mel agreed, of course.

The platelet transfusion had one speed bump. Near the end, Chris experienced what he called a heart attack (in reality, heart burn); Zantac took care of that problem. He was very lethargic until the Zantac kicked in. As soon as the guys got home, Chris rode his scooter for about twenty minutes.

They didn't go straight home though upon release from the clinic because of a need to stop by the pharmacy. There, Dad learned that there was a problem with one of the prescriptions, and called Mom. Mom called Chris' guardian angel at our insurance company, who started taking the problem to its root cause (thanks Sally!). In the mean time, the pharmacist gave Mom some pills to tie Chris over until the problem is completely resolved. They've always taken very good care of Chris.

Once home, the guys entered the house through the garage door. It's a good thing that they did because they found a surprise in there. The next-door neighbor cat, "Hershey D. Cat" apparently snuck in while the guys left the house this morning. He was happy to get some fresh air. Both Chris and Genie (who had been in her club house for almost seven hours) were eager to be outside too, so Genie and Dad went on a walk while Chris rode his scooter. He developed some neat tricks. He's getting pretty fearless -- almost reckless (but not quite) -- but he needs the outlet. He got platelets today, so he knew he could "enjoy" himself. Once it got too dark to ride, Chris settled on the couch and watched "The Simpsons."

Chris tried some rice that Dad had made in a rice cooker and liked it better than the usual stuff. Ha. He also nibbled on some grilled pork tenderloin and may be expanding his culinary horizons.

Medically, it was a weird day. The lowered counts were perplexing since he's had two weeks to recover from the last chemo cycle and actually had an upward trend going, the last time we checked. When his mediport was accessed and taped, the tape initially caused Chris to be itchy because some of it came into contact with his rash. He worked through it and even got so that it didn't bother him anymore. Some kids would have never tolerated that. He is quite the combat veteran, and we're quite proud of him. He usually manages to amaze the medical staff with his poise. As they might say, he's been "in contact" for 1620 days with almost no breaks. That's a long fight.

Joke of the day -- Why didn't the banana snore? He didn't want to wake up the whole bunch.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, November 30, 2003 9:06 PM CST

Hi Everybuddy!

The highlights of Chris' day included helping set up the Christmas tree and finding the last book in a series of four books that he started on reading. He also finished the last book that he needed to read in order to be eligible to receive an Advanced Reading (AR) award, provided he passes the comprehension tests. He got out of the house for the usual Sunday routine: church and lunch at Pizza Hut. At church, he sat near a friend with whom he attended preschool.

Chris woke up by himself this morning, but only just moments before Dad and Genie came into his room. Genie was so disappointed that it took Chris and Dad a few minutes of calling and drumming on the bed for her to get back into the "wake up mode." It was worth the wait; she did a good job being goofy. Chris also wanted her to lay across his feet because they were cold (we had our first cold night of the season). She did a great job in that mission.

Chris was all over the place today: helping Mom, helping Dad, playing video games, riding his scooter, and reading. He got "caught" trying to ride his skateboard without a parent being on the scene and thus lost his skateboard privileges for a while. We all put in a pretty full workday, ending a busy weekend and getting over being sick. The house is beginning to take on a Christmassy appearance, even though the tree is only about half trimmed. It was really a nice weekend about which to be thankful.

We took a break to sneak over to Mom's office, where we began the decorating process there, too. We can only hope that her associates enjoy the two dancing, singing snowmen as much as we have over the years. Chris still likes them and made sure that the office was filled with "Christmas music." We completed an errand at the only post office in the area that's open on Sundays. It's located near a bookstore that Chris asked if we could stop to search for the ever illusive fourth book. He was rewarded with the book. We also took Chris into a fashion shop focused on the skateboarding crowd. It didn't seem to fit in with his budding sense of fashion style, but he liked the long board skateboards that he saw there.

Joke of the day -- What do you get when you mix apples and spiders? Apple spider.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, November 29, 2003 10:18 PM CST

Hi Everybuddy!

Chris woke himself up this morning at the halfway reasonable hour of about 9 a.m. Mom and Genie didn't get the chance to do the honors (Mom was taking care of some Christmas duties and Dad was working out in the yard this morning). His appetite was on track today and we're glad to see some improvement in that regard. Thankfully, it was pretty much a medically event-free day. About the only news on that front is that both of his underarms have a few dry scaly places that are a little itchy. We haven't changed soap or detergents lately, so we'll have to see what that may be all about.

There's not much of any interest to report today. Chris spent some time alternating between playing video games, riding his scooter, and reading. Last night, he finished reading the latest "Snag and Me" book by Joe Johnston, and give it two thumbs up -- especially for the elevator adventures. Chris also spent time going shopping today with his parents (a quest which had us out driving around a large part of the Tampa Bay area). Chris was able to watch the movie, "Shrek" as we drove around. He also waited to hear whether his friend Greg could spend the night. Unfortunately, he learned that poor Greg and most of his family are now ill with the "bug du jour." We hope that they're up and about soon.

Chris is beginning to develop a sense of fashion style (he didn't even quite make it into double digits before that set in). He informed us today that "cool" sports shoes have zippers instead of laces. He particularly liked a Nike (which he pronounced as "Nee-Kee") model. At least he's not so "stylish" as to require a pair right then and there, particularly since he still has a perfectly good pair that still fit. His developing fashion sense allowed him to delight in wearing his sun visor on his head but backwards and upside down. Since he hasn't made his first million singing rap songs yet, Dad asked him to forego that fashion concept today.

Joke of the day -- (complements of Uncle Tom and Cousin Jane) -- What rock group has four men who don't sing? Mount Rushmore.�

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, November 28, 2003 9:32 PM CST

Hi Everybuddy!

Mom and Genie had to go wake up Chris this morning because he seemed to be poised to sleep away the day. Genie jumped right up on the bed, then gave him a big kiss on the face. That got him moving. Dad was on a reconnaissance mission for Chris, who has been saving his money (with the help of Grannylin, Granddad, Grandma, Grandpa and "Aunt" Cathy) for a little while to purchase a Nintendo Gamecube; he didn't want to wait for Santa. Dad reported in on his findings, and Mom made a phone call; Chris was able to take advantage of an excellent sale. He did a good job saving, budgeting and shopping for this project.

Chris had a mix of activities today. Although he was focused on his video games, he also played with Genie, rode his scooter, was a helper (along with Mom) for Dad, who had to rewire some of the house. He kept busy, including helping Dad troubleshoot the Christmas lights that Dad had worked on yesterday. Chris was also of minimal assistance to Mom, who was doing a thorough job sorting through things in his room. Mom didn't want him in there for too long because she wanted to be able to make some things "disappear" for either charity or trash, depending on the nature of the items. Mom removed the equivalent of three large black trash bags full of toys, books, magazines and outgrown clothes, and one can't even hardly tell the difference when one enters his room. Chris had called to see whether Greg could come over for a visit, but he was a little under the weather. We took a couple of breaks today: for the Gamecube, lunch at Mel's Hot Dogs, and later to the bookstore.

Medically, Chris had a nice eventfree day, and his appetite was a bit improved. It's a start.

Joke of the day -- (complements of Uncle Tom and Cousin Jane) -- Why can't you play cards on a small boat? Because there's always someone sitting on the deck.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, November 28, 2003 6:44 AM CST

Late Entry from November 27, 2003

Hi Everybuddy!

Chris got his wish about sleeping late today: Dad and Genie woke him up just in time to go to an early Thanksgiving brunch at a superb local seafood restaurant that also provides a wonderful traditional Thanksgiving feast. The meal was very good although Chris didn't eat all that much. Rather than turkey this year, Chris ate popcorn shrimp and sausage for his Thanksgiving feast main course. He gave the server one of his happy face pins because she was really nice and . . . happy.

Afterwards, we headed over to watch Disney's new movie, "The Haunted Mansion." It won't win any Academy Awards, but it was entertaining. Chris said that he wished that the ghosts had been scarier. Now we don't know where that came from since he usually doesn't/didn't like scary things. Maybe it's because he's trying to wear down Mom, whom he has been pestering to let him see "Scary Movie 3." He thinks that he's more mature now. As for the Haunted Mansion, we think that it's probably not for anyone younger than Chris. Tonight Chris also watched, "Jurassic Park III" at dinner. None of the dinosaurs and gore seemed to faze him, but for one fight scene between two dinosaurs. This is a big step for him, but Mom is struggling to deal with the growing sophistication of her "baby."

We were at home this afternoon, where Chris played video games, Mom worked on Christmas cards, and Dad put up Christmas lights outside (Chris and Mom would help out occasionally). Chris also read and played with the dog. He and Mom also worked on Chris' skateboard, loosening two bolts to help make the skateboard easier to turn. Chris did it with Mom's help after reading how to do it in a book. He used his own tools from his own tool bag, and did a good job. Chris also took some time to ride his scooter.

Chris spoke with Uncle Brian, who called from Iraq. All was well with him there. Brian didn't get to meet President Bush though.

Medically, Chris still had some trouble with diarrhea. It happens a few hours after he eats, but not after every meal. He hasn't asked for any Imodium AD, which he knows he can have. He is coping. Chris didn't make much progress towards gaining any weight back. As a matter of fact, he wouldn't eat any dessert at the restaurant until Dad gave him a choice between cookies or carrots and string beans. He opted for the cookies, reluctantly.

We hope that everyone had a Happy Thanksgiving. We are so thankful that Chris is around for his fifth Thanksgiving since diagnosis. All by itself, that's a whole lot for which to be thankful indeed. But that doesn't count all of you, who have been there with us every step along the way. We are very grateful for all of your support throughout the years.

Joke of the day -- (complements of Uncle Tom and Cousin Jane) -- What happens if you eat yeast and shoe polish? Every morning you'll rise and shine. (For the record, Cousin Jane wanted us to understand that she often does not contribute to the jokes, but we feel it is guilt by association -- she certainly is humorous enough to do so.)

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, November 26, 2003 9:22 PM CST

Hi Everybuddy!

When Genie and Dad went to wake Chris up this morning (a chore), he said that he should be able to sleep later since he didn't have to go to school. Dad simply said, "Clinic." Chris said "Oh, I forgot." After "morning stuff," the guys headed for the Tampa Clinic for a routine blood test, which showed that most of his counts have risen. The platelets rose due to Monday's transfusion. Today's counts were: white blood cells rose to 2.6 (normal: 4.0 - 12.0), hemoglobin rose to 11.4 (normal: 11.5 - 14.5), platelets rose to 72 (normal: 150 - 450), while the ANC remained at 900 (normal: 1400 - 7400).

Chris saw his friend Christina, who is looking more like her usual perky self. Chris gave her a happy face pin as a welcome back gift. He also saw Ted. Ted is a search and rescue German Shepherd. He is also a certified therapy dog. Ted loves to play catch and the kids love Ted.

After the clinic, the guys went to a bank to meet someone who has been praying for Chris for years. She now has some sort of cancer. Chris gave her a happy face pin, a brownie (a spoon full of sugar helps the medicine go down), and some sage advice (always have a barf pin in your car). She assured him that she would.

We had things to do this morning so Chris played video games. He also did some reading and playing with the dog. We intend to get him up and about this weekend so that he doesn't grow roots in front of the TV. He did go out with us to run some errands early this afternoon. Mom took the day off to take care of some business around the house, but she fell ill with a migraine and the side effects that go along with it. While she tried to sleep that off, Chris helped Dad retrieve our Christmas decorations (which also filled up the station wagon and its luggage rack). Chris then helped Dad put a dent on Christmas decorating. The guys worked steadily until Mom ordered some pizza for a light dinner.

Medically, Chris is still doing reasonably well, but he had a few bouts of diarrhea. We're not too sure of what to make of it; maybe it's just the "normal" stuff that "normal" people get it occasionally. We'll continue to keep an eye on it. Chris still needs to gain back some weight. Monday, he's due to start yet another cycle of Irinotecan so he's likely to be losing his appetite again. With tomorrow being Thanksgiving, there's a real opportunity for weight gain though.

Joke of the day -- (complements of Uncle Tom and Cousin Jane) -- What is the best day to go to the beach? Sun-day, of course.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, November 25, 2003 9:12 PM CST

Hi Everybuddy!

Chris actually started his school day in school for a change. No clinic visits today. He said that school was kind of "laid back" today; all they did, beside music class, was one math quiz, some writing games (we're not sure what they were) and reading. He's reading "Snag and Me" at bedtime and has made some major inroads into the book that he bought yesterday. He did not have any medical problems this morning, but he didn't do such a great job with breakfast. He also managed to play with Genie before heading out to school. Chris was delighted to start class with his classmates for once.

When Chris and Dad got home from school, he helped Dad rewire some light switches. He didn't actually mess with any of the electrical things but acted more as a "gopher" and observer, such as helping Dad identify the right circuit breaker that controlled the light's circuit. He also helped Dad make some goulash for dinner, and brownies, in addition to playing a video game. It was a busy afternoon.

Chris spoke with Grandma and Grandpa. His conversation, from what Dad heard of it, was pretty sophisticated. Whatever he was talking to them about, it was sarcastic and he was smiling. . . Granddad also called later this evening, but Chris didn't get a chance to talk with him.

Medically, Chris is still doing well and hasn't complained of any goofy eye problems. He now has an appointment with the eye doctor next week, which Chris thinks is cool. He had a good time with the guy last time and remembers that.

Joke of the day -- What did one elevator say to the other elevator? I think I'm coming down with something. �

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, November 24, 2003 9:21 PM CST

Hi Everybuddy!

Today started with Chris visiting the Tampa Clinic for a routine blood test, which showed that all of his counts have dropped. They have sunk lower than we thought might happen after this cycle (but we've certainly seen worse over the years). On the other hand, his chemo cycles have been coming very close together lately, sometimes with only a week off between them. Today's counts were: white blood cells dropped to 2.2 (normal: 4.0 - 12.0), hemoglobin dropped to 10.7 (normal: 11.5 - 14.5), platelets dropped to 15 (normal: 150 - 450), while the ANC dropped to 900 (normal: 1400 - 7400). Chris was "invited" to come back to the clinic at 3 p.m. to enjoy the nurses' company and oh yeah, get a platelet transfusion.

Chris did not have any medical problems this morning, but he just picked around at his breakfast. He had a frog in his throat while walking into the clinic, but a glass of cold water made that frog hop up. The nicest aspect of this morning was that the guys were able to see Chris' friend, Christina, who is finally out of the hospital and back in the clinic scene after her bone marrow transplant. She looked great, as did her sister Ashley. The clinic was busy today. Because of Chris' low blood counts, the guys will be visiting it again on Wednesday morning.

Chris arrived back at class just before his classmates finished a project. Chris said he made short work of it so he got caught up quickly. He had an interesting homework assignment tonight. He had to write a narrative story about cooking a turkey. When Chris and Dad were "storybooking" an idea, it evolved into the turkey becoming a Thanksgiving dinner guest. Like the other guests, it was served Rice Krispies; the protagonist didn't have the heart to kill and cook the bird. His imagination is at it again.

Chris was hungry when Dad picked him up after school, so they had an early dinner at Burger King before arriving at the clinic at the prescribed time for the transfusion. He started watching the movie, "Wild, Wild West." It has a rap song at the end; the nurses enjoyed Chris performing a rather good imitation of Will Smith.

When Mom arrived home late this evening, she said that she needed to get some things for Chris' fish, Cici, who is "Fish Emeritus" in residence at Mom's office. We then all headed for the pet store, which happens to be next door to CiCi's namesake, CiCi's Pizza -- so we ate there. Chris saw a very well-broken-in skateboard at a used sporting goods store that he wants to get. For some reason, he thinks that it must be a better board because it was used so much by its previous owner. Hmm . . ..

Medically, Chris is still doing well although we're making sure that things are covered concerning his goofy eyes. It was confirmed today by medical staff that his left eye is a little less responsive than his right eye; they think it's a good idea to have a full eye exam scheduled. Chris is also slated to get a full CT scan, as well as full bone and MIBG scans. That means his head will be included in those tests, unlike the previous ones. He'll get a full hearing test soon, too.

Joke of the day -- (this was a story from one of the nurses Chris liked). The nurse took her dog to a nearby "dog beach." When she was loading him in the car, her Doberman got the jump on her and got into the driver's seat before she could. She scowled at him and he backed his rump back into the steering wheel and honked the horn. Instead of being afraid, she said that he looked quite pleased at it all.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, November 23, 2003 9:05 PM CST

Hi Everybuddy!

Chris was pretty much stuck with Mom and Dad all day. He got out for the usual Sunday routine: church, a stop at Weight Watchers and lunch at Pizza Hut (yes, you can do that with WW ;-) ). After church, they bought some doughnuts from the Boy Scouts but are saving them for Chris to take to the clinic tomorrow. Chris' appetite is returning; he devoured five slices of pizza at lunch. He still has some weight to gain back before his next cycle of chemo begins (currently set to start in eight days).

Other than that, Chris pretty much spent the rest of his day at home, either playing a video game or goofing off with Genie. He got out to ride his scooter for a while -- it was beautiful outside. He also continued reading his book, "Snag and Me." He thought that the part in which Snag and Earl D. were admiring the toilet in their fancy hotel in St. Louis (during a bygone era) to be really funny.

Mom, who hasn't been feeling so well most of this past week, got a taste for soup and salad, so we went out to a restaurant that has especially good soup. Chris had dinner and read his book while waiting for his food. Meanwhile, Mom and Dad kept busy working on the central puzzle that was a part of the children's menu while waiting for their food.

Medically, Chris appears to be doing fine except for dwindling supply of hair. He's definitely shedding. Interestingly, at bedtime tonight, Chris mentioned that he'd like to have an eye exam. He said that twice today, he felt like his eyes were playing tricks on him. Once, he felt like he was looking across the room at a bookshelf that appeared to get closer then farther away. Then at bedtime, he said that he felt like things got darker then lighter (to be fair though, at that time, only the nightlight was on). Chris has a regular clinic visit tomorrow, so that can get checked out. Still, it's been a long time since he had a regular eye exam, so Mom will get one lined up for him.

Joke of the day -- (Genie endorsed) -- Which kind of cheese do dogs like on their pizza? Mutts-erella.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, November 22, 2003 8:55 PM CST

Hi Everybuddy!

Chris had a really cool day today. He and his Cub Scout den went to a program presented at the zoo, conducted so they could earn their Webelo Naturalist pin. Chris had already earned his, but he went just to be around the rest of the den. As expected, he also learned a few new things, too.

Dad had to awaken him somewhat early for a Saturday because, before they could go to the zoo, they had to pick up a replacement part for the camper from a shop that is located a bit of a distance from home. After a breakfast of two small waffles, Chris and Dad headed for the RV parts place. Mom had Army drill today and had left home before Chris even awoke.

When the guys got to the RV dealership, there were almost one hundred Roadtrek RVs there (it is the type that we have). Chris said that he's never seen so many Roadtreks in one place. While they did have quite a few of them sell on the lot, most were owned by people who were there for a big Florida Roadtrek club meeting. Dad managed to come away with his part.

After a quick stop at McDonalds for an early lunch, the guys headed toward home, although they thought that they'd have to go right to the zoo. They ended up being able to stop by home and walk Genie before heading over to the zoo,

Most of Chris' den were there today. Chris and Greg got to hang out together, along with the rest of the boys. The naturalist took the boys through every task in the program before all went on a walkabout in the zoo. It was a very nice program. Each of the boys got something out of it and managed to earn their pins, too. They all also made terrariums in clear 2 liter coke bottles. Chris has sunflower seeds in his.

After the program, Chris and Greg got together and conned the parents into letting Greg come over to our house for a while. The two had a famous time as usual. They played some video games and rode Chris' bike and scooter. After Greg left, Chris and Dad went out riding with Chris using his scooter. He's come a long way since last May. This time he even took the scooter over a few credible bumps.

The guys headed for home to await Mom's return. When Mom got home, we decided to go out and get something that we couldn't readily make at home. We went to a restaurant that we all like. We had a little bit of a wait, so Chris occupied himself by reading the book that his friend, "Grandpa Joe" wrote, "Snag and Me." Chris is at the point in the story where Snag and Earl D. are on the train to St. Louis.

After dinner, we started playing a new game with Genie: "keep away" with a 20 oz soft drink bottle. She is just too quick, but after about twenty minutes, she petered out. She is very quick. At one time, Chris put on her leash on her with the hopes that she would pull him around on his flying turtle. She was way ahead of him. No matter what he tried, he couldn't coax or fool her into pulling him around. It was funny. We thought that we had worn Genie (and Chris) out for the evening, but not long after Chris got cleaned up for bed, they had a fast moving game of Hide-and-seek. Chris would hide and Genie would search for him at about fifteen miles per hour. They played the mild version of "alpha dog," too.

Medically, Chris is almost clear of any congestion problems, but he has been sneezing in the morning -- yet a new adventure. It didn't go on for too long though. His hair is noticeably thinner.

Joke of the day -- What do you call a city with 2,000,000 eggs? New Yolk City.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, November 21, 2003 9:06 PM CST

Hi Everybuddy!

For some reason, things moved slowly this morning, but Dad got Chris to school just before the bell. Somedays are just like that, we guess. Today Chris intended to visit one of his Cub Scout friends, who is in-patient at a local hospital. Dad tried calling all day but he could never get in contact with him (or his family), so we didn't go. Instead, when Dad picked Chris up after school, the guys headed over to the Boy Scouts headquarters, where they picked up new scorpion patrol patches for the Webelos Scouts. Chris also purchased a small pocket knife with some money that he had saved.

The guys then headed for home to await Mom's return home from work. Once we were together, we headed out to shop for a new water softener. Chris was really thrilled about that (not!) until we met a sales representative, who happened to also be a college student studying to be an elementary school teacher. She is participating in a teaching internship with a fourth grade class. Chris thought that was cool. He really liked her watch, which showed people doing different things (like exercising) as the seconds passed.

Since it was relatively late, we ate at the food court. As soon as we sat down, a scruffy looking man whom we had never met before, came up to us and asked permission to say a prayer for Chris. He kneeled down next to Chris (who has lost enough hair now to make it obvious that something isn't quite right with him), and prayed with him, asking for Chris' cells to be put in proper order. After some pleasantries, the man walked off and eventually disappeared into the crowd. Chris then ate his dinner. Just as he was finishing up, one of his best friends from school came by and surprised him. The two talked for a while. He and his mom (a teacher at Chris' school) had been shopping, too.

Medically, Chris is having less and less congestion. His appetite is definitely on the way back as he had a small breakfast, lunch, and early dinner on the way to the scout headquarters, and then a late hot dog.

Joke of the day -- What has 4 legs, a trunk, and is gray? A mouse on vacation.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, November 20, 2003 9:31 PM CST

Hi Everybuddy!

Today was a big day for Chris. He was awarded his Webelos badge tonight at the Cub Scout pack meeting. He was also presented with his compass badge and the eastern compass point (which is awarded for earning more than the required number of skill pins). He was also presented his hard won scholar pin, along with the artist and family member pins.

His day started out at the Tampa clinic for a routine blood test. Chris' blood results show now that he has probably sunk to as low as he's going to go with most of them. Today's counts were: white blood cells rose to 2.6 (normal: 4.0 - 12.0), hemoglobin dropped to 11.3 (normal: 11.5 - 14.5), platelets were at 45 (normal: 150 - 450), while the ANC remained at 1000 (normal: 1400 - 7400). His liver panel test results showed increases in ALT and AST and a decrease in BUN/CRE. ALT rose to 84 (normal: 12 - 34), AST rose to 74 (normal: 22 - 44), and Bun/CRE ratio dropped to 14 (normal: 15 - 24). These are not indicative of a fully healthy liver, but are probably attributable to the chemotherapy. Chris' next cycle of chemo that was to occur next week was postponed because to have continued it on time would have required a three day in-patient stay over Thanksgiving. (Thanks, but we've done that before.) The extra week of recovery should help his blood counts out, too.

Chris did not have any medical problems this morning, but he and Genie have taken to "lingering" in his bed in the morning even after being called to breakfast. The dog is obviously a bad influence on him.

The clinic visit was a bit weird since things started slowly. It turned out that the nurse responsible for starting up the lab today couldn't get her garage door open and then got stuck on a traffic jam. The other staff members quickly reshuffled everyone around. Somehow Chris still managed to get back to school almost at the usual time.

Chris' class worked on writing this morning. They wrote thank-you notes to the parents who had come in yesterday for the "Great American Teach In." Mom received some great notes. Almost everyone had forgotten that she is primarily a lawyer for the State of Florida, and all remembered that she is a soldier. One of Mom's favorite notes asked what the difference was between being a "regular lawyer" and a "government lawyer." Mom wondered which of her government jobs the student thought was the "regular" one.

Dad picked up Chris from school and got him home to start right in on his homework. Their afternoon was full with activities like taking Genie to the vet's office and attending his Cub Scout Pack meeting. He did a good job focusing on his homework which concerned estimation techniques.

The trip to the vet's office went well. Genie was well behaved despite having to get two "finger pokes" (Chris didn't want to stay around and watch). She has a small growth (probably a wart) on a toe, from which the vet drew blood. Then blood was drawn from another paw for a heart worm test: she's clear. Genie must have read a page from Chris' book on being a good patient because she was very calm and well behaved.

Once back home again, Chris took a little break, then finished up the little homework he had left. He donned his uniform and the guys headed out to the Scout meeting. His Scout den (now calling themselves the Scorpion Patrol) is beginning to shape up and demonstrate more teamwork. They all have done a good job working on their progression, Chris has a bit of an advantage since he and Dad often get to work a few times a week on Cub Scout stuff rather than just at meetings.

We headed home after the meeting. After Chris took all his nighttime pills (he takes about thirteen of them twice a day), he and Genie began a game something like a calmer version of "alpha dog." Both had some energy to burn off and needed the exercise. Mom read all her thank-you notes aloud while they played and we all enjoyed them.

Medically, Chris is still having a little morning congestion. Dad told Chris that it was obvious that Chris was losing his hair slowly but surely. Chris' response was, "Oh, that's ok." We're sure it will come back this time. It has come and gone so many times.

Joke of the day -- Where was the Declaration of Independence signed? On the bottom.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,
Chris, Alison and Pat

Wednesday, November 19, 2003 9:20 PM CST

Hi Everybuddy!

We all had an interesting day. It started with Genie and Dad walking into the garage, preparing to go out for the first walk of the morning, and stepping into some briny water complements of our water softener that had apparently announced the end of its service in a very sloppy manner. It didn't cause much damage, but it did make for some slippery walking and a not so pleasant clean up. Because of this, Mom drove Chris to school (a first -- he thought it was cool).

Mom also participated in the school's "Great American Teach In" program. She had 30 minutes to talk about being a lawyer for the State of Florida and for the US Army Reserve. Although she hoped to introduce them to governmental studies, it was evident that most of the students were interested in what it's like to be a soldier. She fielded questions like, "Did you ever ride in a tank? and Did you ever hack into the Pentagon's computer system?" (For the record, Mom's answer to both questions was "no.") Her favorite question from a student though was, "what is a soldier's best weapon?" Several other students responded with guesses involving various types of weapons, but one boy said, "his mind." Not bad for a 4th grader.

Later in the school day, Chris acted as a reception committee member for an hour, and greeted parents as they arrived to participate in the "Great American Teach-In" with various classrooms throughout the school.

Immediately after school, Dad made a presentation to the school's leadership about possibly starting a student volunteer program within the school. (It was not a part of the "Great American Teach In" program.) As luck would have it, computers and printers had acted up all day. Because this presentation was after school, Mom returned from her office earlier than usual in order to take Chris to meet with the family counseling psychologist. As they were leaving the school, they looked for Dad in order to wish him luck. He could have used it since the laptop he was using to support his presentation "decided" that it was time to perform some kind of 30 minute self test. Dad made the entire presentation on paper. The principal and staff liked some of the things that Dad had developed, like instructions and reports that written in "kid friendly" language. Dad's secret was using Chris' advice on develop them, and he's a pretty "friendly kid."

We finally got together at home, and Chris started right in on his homework. Mom was the homework helper this evening. He did well. Not long after, we took off to a store to start looking at replacement water softeners. Chris picked a place to eat in the food court (a surprise -- the pizza place). It was actually like his second dinner since he had eaten an adult-sized chicken McNuggets meal after school before his appointment with the psychologist. He hasn't been eating very well lately and he's lost weight, so this sudden surge in appetite is promising. He finished his second meal quickly and continued to read his new "Snag and Me" book. He started on it last night, and liked it well enough to carry it around with him all day, sneaking peeks into it whenever he had a chance.

Medically, Chris is still a little congested in the morning, but doesn't have any other noticeable problems. In that regard, he's in better shape than Mom or Dad, although both of them are beginning to improve. All his Genie bruises are resolving nicely now that he has some platelets recently. He and Genie had a good old time chasing each other tonight until they ran into one another. No one got hurt, but they decided to mutually call a time out to the merriment -- at least until tomorrow.

Joke of the day -- What happens when you annoy a clock? It gets ticked off.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, November 18, 2003 9:37 PM CST

Hi Everybuddy!

Chris had an interesting day in school. He may have gotten into some trouble (for laughing at a joke at an inappropriate time) but we're not sure. His classroom discipline cards still showed blue (which is good), but he was sent to another classroom for ten minutes (normally not good). Life is so complex. At lunchtime, a teacher that Chris has never seen before (perhaps a substitute teacher?) came up behind him while he was talking and eating with his classmates, and asked for his lunchroom clip. At first, Chris thought it was a lunchroom lady who usually jokes around with the kids, and thought that she said, "clap." Well, that didn't make the situation any better. Fortunately, it also didn't make it any worse. Loss of the lunchroom clip means loss of Fun Friday snacks. In any event, it highlighted Chris' hearing loss problem, which when last tested, indicated severe to nearly profound hearing loss at high frequencies and difficulty in screening out primary sounds from background noises. He recently failed a standard school hearing test in the school district's mobile tester. Certainly, Chris' karma was off today.

This morning started perfectly normally; he and Genie even curled up to go back to sleep when it was time for breakfast. Sometime, we think that dog is a bad influence on him . . . Other than the lunchroom incident and being put into another class for ten minutes, school was cool. He is working on a new secret art project. He won't tell us about it but seems to like it.

Since today was a Terrible Tuesday, Chris got right to work on his homework. He was listening to the movie "Sinbad," but he stayed focused on his homework (and made very few mistakes). Unfortunately, there was so much homework that he had to do more after the Cub Scout den meeting. Before Cub Scouts though, Chris attended "God school," where role-played the part of "the crowd" when Jesus was crucified. Chris thought that he was quite convincing. If his friend Greg was also a part of the crowd, we're sure that they were quite rowdy. Dad saw his teacher thank him, so he must have done all right.

After "God school," the guys went home, where Chris did more homework. He and Dad finished getting some class material together for tonight's Cub Scout meeting, which went well. Chris' den has now voted to become the Scorpion Patrol (a right that Webelos can exercise). The vote was initially split between the scorpions and the dragons, but Chris and Greg (who had voted for the Vikings) moved en masse to the side of the scorpions. Dad thought that it was like watching a political convention. The den chief (an older Boy Scout who helps the younger Webelo Cubs) divided the den into two teams and introduced them to team chess. The parents thought it was going to become chaotic but it actually went really well.

After that meeting, the guys stopped by Burger King and brought home a quick dinner in order to get back to Chris' homework. It took a bit, but he finally got through it all in good stead. It was probably the most homework that he's ever had for one evening -- and of course (Chris' karma being what it was today), it had to happen on a Terrible Tuesday. The good news though was that he found a very nice surprise in the mail: a new "Snag and Me" book, written by one of Chris' fans who regularly follows these updates. Thanks "Grandpa Joe" from Tennessee!

Medically, Chris is still a little congested, but isn't coughing as much and did not have any problems with nausea and vomiting. His scratches and bruises are beginning to resolve quite nicely. It is amazing what a few platelets do for him.

Joke of the day -- Why did the dinosaur cross the road? Because chickens hadn't evolved yet.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, November 17, 2003 8:50 PM CST

Hi Everybuddy!

Chris' blood results show now that he has in fact been receiving chemotherapy: all dropped in value. Today's counts were: white blood cells dropped to 2.5 (normal: 4.0 - 12.0), hemoglobin dropped to 11.8 (normal: 11.5 - 14.5), platelets dropped to 19 (normal: 150 - 450), while the ANC dropped to 1000 (normal: 1400 - 7400). With his platelets at only 19, Chris was invited to return after school for a platelet transfusion. The nurse also drew blood for a full panel test to see how his liver is performing.

Chris' day started out normally and he was his usual bright and smiling self. Just before the guys left for the clinic, Chris asked for some Zofran for a troubled tummy. Apparently, he didn't ask soon enough since he vomited on the way out to the car. As soon as he finished, Chris was back to being his usual smiling self. We just continue to wonder how he can do that.

The clinic visit was nice. Some of the medical staff mentioned that they saw him on TV. They asked if he could skateboard really well. Chris just smiled and pointed to his bandages on his left leg and big toe.

When Dad picked Chris up from school, he had his midterm grades. Three of the grades had dropped a bit. We'll check in with his teacher to find out more about that. The guys then stopped to pick up a snack for Chris to eat during his transfusion. The transfusion went well and Chris watched the movie "Back to the Future." On the way home, he asked to call Mom. During that conversation conned her into going out to his favorite Mexican restaurant (he ate well there).

Once home, Chris took a little break, then did a credible job on his reading homework. He finished up just as Mom walked into the house. We then all discussed the possibility of Chris participating in a school science fair for extra credit at his school. He's thinking about taking on the task. We'll see.

Chris and Genie played their flying turtle/dog bone game but today it looked more like jousting. For many things, Genie is a big chicken, but she is fearless when it comes to taking on Chris when he's riding his flying turtle.

Medically, Chris is still a little congested and has a cough, but doesn't seem to have a runny nose anymore. He did have a bout of nausea and vomiting this morning though.

Joke of the day -- Which burns longer, a white candle or a black candle? Neither, they both burn shorter.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, November 16, 2003 8:47 PM CST

Hi Everybuddy!

Chris' day was a quiet one. About the only excitement he had was to see the movie, "Looney Toons: Back in Action." He ate a pretty good breakfast of a cinnamon apple, so there was improvement there. Chris is actually feeling better than Mom or Dad.

He went to church and to Pizza Hut with Mom. There, his "groupies" there made him a special pizza: it was a "plain Jane" cheese pizza like he always likes, but today he wanted one slice with pepperoni so that he could try it again to see if he liked it. He still doesn't like it, but we imagine that Pizza Hut probably doesn't get too many orders like that one.

That little excursion was enough to wipe out Mom's energy, so they returned home. After a short "chill out" period at home, all three of us headed out for the movie since we went while the theater was not crowded (a habit we started years ago when Chris was undergoing more strenuous chemotherapy) and it's not exactly strenuous activity to sit and watch a movie. The film was ok -- funny in parts, but not as well put together as we thought that it would be. Anyone who likes the old Bugs Bunny/Daffy Duck cartoons will probably like this one, too.

The only stop we made on the way home was to our pharmacy, where our favorite pharmacist was on duty. There was some prescription medicine to pick up, but we were also pleasantly surprised that he managed to obtain some beta-Glucan for Chris, even though the pharmacy has stopped carrying it on its shelves. To make that surprise even better, this longtime Chris supporter got it at a discount. We have always appreciated his and his team's very involved support for Chris.

Chris and Genie were at it again tonight (poor Chris had to play with somebody since Mom and Dad were both dragging). They have already modified their new "Flying Turtle" game. Now Chris rides around with Genie's big plastic dog bone and she tries to get it from him. What's life without a little danger (even if it is only about 1 inch from the floor)?

Medically, Chris' congestion, coughing, runny nose seems to be improving. His abrasions from yesterday are still a bit moist, but thankfully they don't seem to be bothering him nor are they infected.

Joke of the day -- When an actress saw her first strands of gray hair, she thought she'd dye.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, November 15, 2003 9:27 PM CST

Hi Everybuddy!

Chris' day started slowly but got progressively better as the day went on. Mom and Dad were moving sort of slow this morning (still recovering), so Chris started out entertaining himself this morning. Eventually even Mom and Dad picked up momentum, too. Today, Chris met skateboard legend Tony Hawk. He is a genuinely nice guy. He was in town as part of his BoomBoomHuckJam national tour. He decided to visit the children at Tampa's Ronald McDonald House (RMH) while he was in town. Chris had been invited to attend, as well.

After the usual morning stuff, we arrived at the RMH a little early. Chris had brought his skateboard with him, initially with the hopes of getting it autographed. Because we were early, Chris wanted to practice skateboarding on the RMH patio. Remembering that Chris is very much a beginner, this turned out to be a not-so-good idea. As is often the case with beginners, Chris fell. Because of his low platelet count, it got messy soon, so we headed back to the camper where Dad patched him up while Chris watched a movie. Despite the bleeding abrasions, Chris acted like it was no big deal -- that's a change for the better. He is beginning to handle the sight of blood better. We told him that he must be an "official" skateboarder, now that he's "ground beef" (had his first real accident).

After the cleanup and patch-up, we went back into the RMH, Chris joined other boys about his age who were playing a Tony Hawk skateboard video game. While that was in progress, Tony snuck in on them.

After he took a short tour of the RMH, Tony Hawk met with the kids on the patio. There were quite a few children, and Tony was impressed by the activity there. He spent an hour signing autographs, handing out some things from his national tour, and talking with the kids. Chris asked him to sign two cards: one for him and the other for his friend Greg. Tony did so and Chris gave him a smiley face pin. Tony insisted that Chris take a t-shirt. As usual, Chris got bashful in the presence of a celebrity (he's done this before with Lance Armstrong, Hulk Hogan, Harrison Ford, etc.), so he had initially declined. He didn't even ask for beginning skateboarding tips, which was what he wanted to ask about before he got there. Although Chris had a nice time, he nearly backed out of meeting Tony. After it was over though, he was glad that he met him.

As if that wasn't enough, Chris was asked to grant an interview to a local television news channel, Bay News 9. He and Mom wound up on the screen tonight. Having given interviews once or twice before, Chris maintained his poise and did quite well, especially since the interview took place while Chris on the tail-end of his bashful period. The reporter wanted to know what Chris thought about meeting Tony Hawk, to which he replied, "cool!" He also told the reporter that he knows it's important to keep going, even if you fall down a lot. Mom found it fascinating that, although Chris seems somewhat uncomfortable in the presence of a celebrity, it does not seem to faze him at all to have a television camera pointed in his direction. As we started to leave RMH after the interview, two teenage girls stopped Chris and said, "Would you take a picture with us? You are soooo cute!" Chris obliged them. There are some new pictures of the Tony Hawk visit on Chris website.

We got home with just enough time to goof off with Genie a bit and then go to dinner with Greg and his Mom and Dad. Chris had a great time hanging out with his best buddy while the parents talked. He gave Greg the Tony Hawk autograph that he got for him.

Chris and Genie just can't keep from goofing off. Now that "alpha dog" is off the game list, Chris started a new game. He rode his Flying Turtle (It looks like a tractor seat with handlebars mounted on the frame that connects them. It moves when Chris uses his hands and feet to move the handlebars back and forth). Genie could not resist following him around, nipping at him as he went by. She delighted in grabbing his shirt sleeve as he drove by. It was as fun to watch as it was for Chris and Genie. At least nipping the t-shirt didn't create any new bruises.

Medically, Chris' congestion, coughing, runny nose appears to be improving. Hopefully, he will lead the family into a full recovery. He did not have any morning diarrhea.

Joke of the day -- (one for next-door-neighbor Hershey D. Cat and Aunt Jackie's cats) - Why do cats like to hear other cats make noise? It's meow-sic to their ears.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, November 14, 2003 9:05 PM CST

Hi Everybuddy!

Chris' blood results today were more in line with what we were expecting after two back-to-back chemotherapy cycles. They were as follows: white blood cells dropped to 3.6 (normal: 4.0 - 12.0), hemoglobin dropped to 12.6 (normal: 11.5 - 14.5), platelets dropped to 24 (normal: 150 - 450), while the ANC dropped to 1400 (normal: 1400 - 7400). Admittedly, these are not remarkable drops. The doctor decided that these numbers were pretty "normal" for Chris, so he didn't receive a platelet transfusion.

Chris' day started out pretty nicely. He managed to sleep through until when Genie and Dad came to awaken him. Unlike normally where Genie "supervises" Dad preparation of Chris' breakfast, she decided to lay on his bed (specifically, on his feet) until it was time for him to come to breakfast. She and Dad had been "out" already and she knew that it was a little "chilly" this morning.

Chris had an interesting tale to tell about an incident at school between a boy and girl in the class. For some reason, the girl picked on the boy and the substitute teacher didn't follow the usual class discipline procedures. Of course, that brought on a big discussion between Chris and Dad, and later with Mom, about what could have and should have been done. Chris' ideas and logic were pretty convincing; he understands that there is a reason for maintaining discipline at school.

Chris' first stop, once he got home after school, was to say hi to Mom. She stayed home all day, dealing with some sort of "crud." Dad's symptoms are more like those of a cold, but hers is different. Chris decided after seeing Mom that he wasn't doing so badly with his runny nose (which had upset him earlier in the morning).

Since he had no homework today and neither parent was up to par, Chris started to play his video game. He almost won; he is in a very difficult aspect of the game, so "almost" winning can still seem very far away. After several clever attempts, he still hasn't beaten the bad guy. He left a message for his game guru (Uncle Jonathan) to call with strategy ideas.

Chris and Genie kept trying to start another "alpha dog" session this evening, but Dad kept reminding Chris that he doesn't have the platelets for it. Chris knows this since he read the clinic report, too. Still, it's tough to tell a boy and a dog not to roughhouse -- it's just not natural. They made up a crazy alternative: they approached each other in a series of jumping moves. Genie is actually pretty good at it, too, and can reach pretty high.

Dad gave Chris an hour long break from the game, during which Chris worked hard to finish two more Webelos pins; he's been working on them for weeks: Scholar and Family Member. He later had to brief Mom on all of the work for the latter pin as a requirement for the award (aside from just letting her know what's going on in his life).

Chris also had an interesting conversation from his "guardian angel" at our medical insurance company since his diagnosis. She called to let us know that she helped to fix a prescription problem that Mom had reported to her. Mom was asleep at the time, so she spoke first with Dad and then with Chris. His conversation with her was interesting since both of them like and talked about dogs.

Medically, Chris is still coping with congestion, coughing, runny nose and morning diarrhea. He is getting fed up of the runny nose (as is Dad of his own problem). When he saw Mom this afternoon though, he decided that his runny nose wasn't so bad after all. He finished his last dose of Temodar for this cycle tonight. Yeah!

Joke of the day -- (in honor of learning of Cousin Jane's good school grades) -- Those who jump off a Paris bridge are "in Seine."

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, November 13, 2003 9:18 PM CST

Hi Everybuddy!

Chris had an interesting day today. He did his first peer mediation and he went to his school's "Hoe Down" later in the evening. Chris was up early this morning since he coughed himself awake. After a little medicine, he felt well enough to take on some cinnamon apples for breakfast.

Chris had a challenging day at school. He had a substitute teacher (a nice one) and did his first peer mediation. He didn't think that he was successful at the mediation efforts, which was between two girls. Still, when he described the outcome to us, it sounded reasonably successful to us. He was apparently expecting them to give each other a friendly hug or something with their problem solved; instead, they shook hands and went their separate ways. Time will tell if it really worked or not.

Once home, Chris played a video game for a break and then did an excellent job on his math homework. After Dad went over his homework, he fully expected Chris to go back to playing. Instead Dad later found the poor kid sound asleep on the couch. He doesn't seem to have a cold and he's had his flu shot. Having said that, now both Mom and Dad are coming down with some sort of virus. Our symptoms though are a little different than Chris'. We're doing lots of handwashing and using lots of Lysol around here right now though.

Dad woke him up with just enough time to feed him dinner then head over to the school for its "Hoe Down." The main feature was square dancing and a hot dog or BBQ dinner. It was nice but the square dance caller just didn't seem to realize that teaching square dancing to hundreds of young children (grades K-5) requires different tactics than teaching it to adults. The kids seemed to have fun anyway.

Things were going well between Chris and Genie in reference to not playing "alpha dog." However, Mom learned that Genie wants to get involved in Chris' in-home skateboard lessons. Genie jumped on his shoulder and now Chris has two six inch long welts, where her paw caught him. The poor boy sort of looks like he was caught in a landslide. His arms and shoulders are a mess, but the rest of him is in halfway decent shape.

Medically, Chris is handling his congestion, coughing, and runny nose. He went to the school nurse to get some Sudafed during school hours, only to learn that it was one medicine that Dad hadn't pre-positioned at the school in advance. After discussing it with Dad by telephone, the nurse gave Chris some Benedryl. Chris and Dad later bought some Sudafed for his school medicine kit so that they won't have that problem again.

Joke of the day -- Did you hear about the actor who fell through the floor? It was just a stage he was going through.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, November 12, 2003 9:24 PM CST

Hi Everybuddy!

Chris had some surprising blood test results again: every factor rose but for his ANC. Despite all indications from the dog wrestling bruises on his arms, Chris didn't require the platelet transfusion that we just knew he was going to need. Today's blood results were: white blood cells rose to 4.1 (normal: 4.0 - 12.0), hemoglobin rose to 12.7 (normal: 11.5 - 14.5), platelets rose to 30 (normal: 150 - 450), while the ANC dropped to 1600 (normal: 1400 - 7400). He weighed in almost two and half pounds lighter than when he started his cycle of Irinotecan (the last cycle, not the current one).

Chris went to school today and seemingly enjoyed himself. He has been having a little trouble with one boy who is apparently "trying too hard" to be friends. That's an issue that may take some time and finesse to resolve.

Once home, Chris played a video game for a while, then did an excellent job on his English homework. Afterwards, he went back to his game (a familiar story). Chris actually thought that he was pretty close to winning the game, but he later got a call from his game guru, Uncle Jonathan, who broke the news that he still had quite a way to go yet. He talked to Uncle Jonathan for quite a while about revising his gaming strategy.

Chris and Genie started another "alpha dog" session until Dad reminded Chris that there was a moratorium on that style of play until his platelet level improves significantly. Boy and dog switched to playing catch (or perhaps we should call it "chase" since that's what Genie does with the ball most of the time).

Medically, Chris is still coping with congestion, coughing, minor diarrhea, and now a runny nose. Poor kid. As usual, he just takes it all in stride and blows through bottles of alcohol soap so he won't spread any germs.

Joke of the day -- (Genie and Hershey D. Cat approved) -- Why do cats eat fur balls? Because they love a good gag.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, November 11, 2003 9:39 PM CST

Hi Everybuddy!

Chris had another quiet day, which was thankfully free from nausea, diarrhea, or fevers. He woke up early (even without a dog's assistance) and linked up with Dad in the den. Chris was moving stealthily, trying not to wake up anyone, but Dad had beat him; Genie has her own idea of how much is enough sleep for a human, depending upon when she needs to go outside.

Chris' agenda was to make some progress on a particular video game that he has been playing. He did so, too and is now involved in the game's final confrontation. Chris ate a pretty good breakfast of cereal.

One of the major events of the day was attending our first family counseling session. It went well, but Chris didn't seem too impressed. We'll work with him on that. We had told that the place had a video game room (it does, although he didn't make it into that room today) but he did meet the coolest "staff member," a tiny black Chihuahua named "Princess."

Chris picked out a nearby Mexican restaurant for lunch but was disappointed by the different quesadilla recipe. He didn't eat much it unfortunately. He's still down a few pounds from his last chemo cycle.

On the way home, we wanted to do something special, so we went to a local miniature golf course. Although he ultimately came in with the high score, Chris led Mom and Dad through the first five holes and his score was under par. That was an amazing improvement over his last outing there. He and Mom were also going to drive a go-cart together, but it turned out that the person who sold us the tickets gave Mom the wrong wristband. After waiting in line for twenty minutes, we learned that they couldn't go out driving after all. Chris' energy level was dropping rapidly, so there was no point in trying to stand in line again. When presented with the problem, the staff made things right by issuing Mom and Chris a rain check for a future visit.

Once home, Chris continued play in the video game in the quest to get to its end. He is getting close. Just before the gaming began, Chris fluffed up the throw pillows and invited Mom to "take a nap" on the couch in honor of Veterans Day. Now, he knew that Mom was likely to fall asleep as soon as she got comfortable on the sofa. This way though, he probably figured that he scored "brownie points" for recognizing Veterans Day and Mom was able to watch his gaming for the couple of minutes that passed before she started snoozing. (Peeking in on Dad in his bedroom, he found that Dad had also taken advantage of the Veterans Day nap opportunity.) We also want to recognize Uncle Brian, both grandfathers, and all other veterans in our families and who count themselves among Chris' friends. Thank you all.

We also watched a movie while Genie entertained everyone by playing catch with herself. Chris, Mom, and Genie also had a big "alpha dog" session. Unfortunately it became apparent about hour later that Chris probably needs a platelet transfusion. Both his right and left arms are covered in purple bruises, not because the play was rough, but because his blood system is weak. We are now on an "alpha dog" game moratorium until his platelet level comes up again. The bruises don't seem to bother him, but they sure bother Mom and Dad.

Medically, Chris' biggest problems appear to be congestion, somewhat frequent coughing and bruising. His appetite is still suppressed but improving and he tires easily.

Joke of the day -- What's the difference between a cat and a frog? Well, a cat has nine lives, but a frog croaks every night.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, November 10, 2003 9:36 PM CST

Hi Everybuddy!

Chris has started yet another cycle of chemo; this time it's Temodal. He started the day at the Tampa Clinic, fully expecting to have to get a platelet transfusion today. He didn't need it though. Actually, all his blood counts rose except for the platelets. Everyone was mildly surprised. Once again, logic dictates that his counts should be dropping after the last cycle of chemotherapy (which was only 2 weeks ago). Today's blood results were: white blood cells rose to 3.8 (normal: 4.0 - 12.0), hemoglobin rose to 11.3 (normal: 11.5 - 14.5), platelets dropped to 25 (normal: 150 - 450), while the ANC rose to 2200 (normal: 1400 - 7400). Except for some congestion and occasional coughing, Chris was in pretty good shape today, so he started another chemo cycle of Temodal. She said that his liver felt quite good (not exactly the most accurate diagnostic tool, but the doctor definitely can feel something when things aren't going well). Because a different doctor is covering the clinic than last time, Dad discussed with her the arrangements he had made with the other oncologist. Chris loves them both and they're both great. Still, it pays to keep our cause in the forefront.

Chris did a much better job eating today: he finished most of his cereal, had a corn dog and applesauce for lunch at school, and put a good dent in some macaroni and cheese (which he prepared himself, with a little help from Dad, who handled the "hot pot" part) and a hot dog. Dad didn't catch what his official weight was today, but it was close enough to his usual weight that his dosage of Temodal didn't change.

In other news, Chris made some big moves on two of his Webelos pins. One task was to figure out how his school operates administratively (for his scholar pin). He and Dad had spoken about this before, but not to the detail Chris "figured out" on his own. He showed it to his teacher, who was so impressed that she corrected it for him. He was surprisingly close to being right.

Once home, Chris played a video game for a while and then did an excellent job on his math homework. Afterwards, he went back to his game. There was one phase in particular that was extremely difficult -- so much so he was trying to talk to Uncle Jonathan about devising a strategy. He ended up figuring it out by himself, involving some interesting deductions.

Chris, Genie, and Mom had quite a dog pile going on this evening. Chris sat on Mom's back and Genie didn't want him there. She made all sorts of nipping attacks that Chris liked, even though on each occasion he said, "Ouch." For some reason, this inspired her to try to get him off of Mom's back even more diligently. They all had a good time, but with a platelet level of 25, we can only imagine what Chris is going to look like tomorrow.

Medically, Chris has moved on to new ailments. He now has congestion and coughing during the morning and evening hours. He has started his second cycle of Temodal, which is his fifth cycle of 2nd relapse chemo, and his twenty-second cycle of chemo since he was diagnosed in May 1999. He is amazing about he manages to keep it all together; it's no small wonder that Grandma and Grandpa call him the "Smiling Warrior."

Joke of the day -- Why do fish live in salt water? Because pepper makes them sneeze.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, November 9, 2003 9:22 PM CST

Hi Everybuddy!

Chris had a very quiet kind of day, one that had us on "fever watch" for most of it. Chris said he felt one coming on about 20 minutes before it was time to go to church. He was right, too. He ran a low grade fever for most of the day, which started about two hours after a pretty decent breakfast of Rice Krispies. No connection to the cereal that we know of, so we just attribute it to dropping blood counts. Dad verified that the right stuff was in the boxes that we always have packed for the hospital, just to be on the safe side. We didn't pack clothes though.

He was pretty lethargic throughout the day and spent most of his time locked in the world of "Dark Cloud," a video game. Chris did rather well and had company from either Genie, Mom, or Dad (sometimes all three) all day long. At one point, he and Dad redesigned a village in the game so that Chris could obtain a reward that he'll need later in the game. He had to settle for Dad's help since he couldn't get a hold of his private game consultant, Uncle Jonathan (who, of course, didn't know that Chris was going to spend his day on this game).

Mom managed to get Chris up and/or out a few times. While she walked the dog, he rode on his scooter for a bit. There were also three "mini-dog piles" through the day. At one time, all three of us were on hands and knees "herding" Genie. She seemed to like it.

Medically, Chris had another day without significant side effects specific to Irinotecan, although he still had a bit of a noisy stomach and some diarrhea (more normal than it has been). His temperature was up and down in a low grade fever all day, but was back down toward normal at bedtime. Chris was in a low energy mode all day. On the bright side, he ate better today than he has in a while. He had a runny nose, was congested and coughing more. Perhaps there is a correlation between his congestion and the Irinotecan since it happened twice.

Joke of the day (complements of Uncle Tom and Cousin Jane, and it's Genie-approved) -- How do cats buy things? From a cat-alogue.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, November 8, 2003 9:23 PM CST

Hi Everybuddy!

Chris enjoyed a nice day today; he was not plagued by the side effects of the Irinotecan. He may well start with the Temodal on Monday. We'll see. He also spent most of the day with his friend, Greg.

Chris awoke somewhat early for a Saturday. Dad fixed him a breakfast of a grilled cheese sandwich. Unlike most of this past week, he managed to eat it all and retain it, too. He didn't even require any additional medications. He started into a new video game early this morning and soon got the idea to invite his friend Greg.

Those two were into all sorts of things: playing a wide variety of games and playing tricks on Mom, Dad, and Genie. Chris, Greg and Dad went back to their "ballpark" in the backyard, where they had batting practice. Dad functioned as the pitcher and infield. There is definitely room for improvement in their batting. The guys came in for a while and then later went back outside with Genie, who loves to go exploring. About one quarter of an acre of our property is part of a conservation area. In that, Genie found an opportunity to roll in something smelly (which brought back fond memories of some of the "Hank the Cowdog" stories). Chris, assisted by Mom, then had the opportunity to give Genie a shower in the outdoor bathroom shortly after Greg left. Chris didn't like having to deal with all of the dog hair that Genie shed in the shower.

Chris felt the urge for some shrimp for dinner. Since he's lost a couple of pounds this week due to some very unpleasant side effects of this past chemo cycle (and managed to keep going to school while dealing with them), we took him to Red Lobster. He did a pretty good job with his meal there, although he's certainly not up to normal "Chris eating standards." On the way back home, we stopped at the supermarket for the usual weekend shopping. There, Chris demonstrated how well he gets around a supermarket. He did a good job talking with the staff in order to locate an item that had been moved from its regular location, now that the store has moved traditional Thanksgiving food items to the endcaps.

We got home in just enough time to put the foodstuffs away and watch the lunar eclipse. It was a fairly clear evening with only a few scattered clouds, so the eclipse was fully visible. At its height, the moon looked like a ping pong ball suspended in space. Although Chris wasn't particularly impressed by the science of the Earth blocking the light from the sun, he did appreciate the beauty of that suspended ping pong ball.

We posted some new pictures to Chris' webpage. They're sort of like the lost Dutchman, although as sometimes when you go to the picture page you see the new ones and sometimes you get the old ones. Go figure. We don't control that webpage server . . .

Medically, Chris had a relatively good day. No real side effect problems but he is battling with minor congestion. His hair is getting noticeably thinner in the back; now it is beginning to look more like the top of his head. He seems to be totally oblivious to it though.

Joke of the day -- Why was the math book sad? Because it had so many problems.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, November 7, 2003 9:40 PM CST

Hi Everybuddy!

Well, Chris' performing days with his school's fourth grade classes ended when they made their final performance in the outdoor pavilion for the entire school. Both Mom and Dad attended the event again. It was quite good; it was obvious that the rest of the kids in the school were quite impressed. Another impressive thing was that the principal had issued instructions over the school's public address system that all of the students were to bring their chairs from their classrooms with them to the pavilion. Mom and Dad both thought that it was going to be quite a debacle. Surprisingly, every class from kindergarten through fifth grade arrived in orderly lines carrying their chairs and quickly arrayed them so the were all able to see the show. Anyone would have been impressed. Their departure after the show was just as impressive. Children will never cease to amaze us (the kindergartners were struggling a bit with their chairs, but they'd walk a few yards, then stop for a break, then do it again).

We met with Chris' school psychologist. She thinks that Chris may benefit from some additional counseling so we'll head to family counseling some time in the future. Almost five years of fighting this stuff, dealing with another relapse, not having school-aged friends who live within walking distance to us, and perhaps Chris starting to notice that he no longer sees quite a few of his friends at clinic visits are starting to take its toll. Actually, it's amazing that he's dealt with all of this for as long he has . . ..

Chris was pretty happy after school. For his Friday Fun Day activity, he read some Sherlock Holmes stories. It's a good book but not an AR (accelerated reading) book, so he'll have to read other, less interesting (according to Chris) books that are on the AR book list later. He and Dad stopped for a short snack (and a big drink -- he was thirsty) before going shopping for Uncle Brian. Chris also picked out a video game that Grandma and Grandpa are sponsoring.

He called Grandma and Grandpa later (after he'd tried the game), thanked them, and told them how awesome the game was. They told him that they were still clearing out fallen trees from the last hurricane. Of course they had to trade some jokes as Grandma seemed to be feeling better and more talkative.

Medically, Chris has been doing a little better with his eating, except at breakfast time. He also seems to be slowing down on the side-effect related problems and hasn't needed as many doses of Zofran and Imodium AD. He got some cough medicine this evening, in addition to the usual "nighttime" medicines. His blood counts are on the way down.

Joke of the day -- What's gray, weighs two tons, and puts you to sleep? A hypno-potamus.

We learned from the mother of Chris' friend, Allie, that her latest chemo combination hasn't been working; her latest CT scan shows significant growth in the size of her tumors. Allie, who still looks and acts very healthy, is now bravely going to pursue phase one clinical trials through the National Cancer Institute. � They are unproven in humans and we know how Allie's family is feeling. They could use some special support. Allie is a fantastically brave young woman so we know she'll give it her best try.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, November 6, 2003 9:29 PM CST

Hi Everybuddy!

Chris is breathing a sigh of relief now that tonight's school performance has been completed. He did an excellent job reciting his piece from Henry David Thoreau. Actually, there were about 50 students with speaking parts and not a one made a mistake. The music was well arranged and sung well. The whole fourth grade production had a high degree of professionalism to it. In addition to his recitation, Chris also had to escort Mom and then later Dad to the stage as veterans. If he was nervous, he didn't act that way. He was also very happy to see that our friend Cate came to watch the performance.

Today started with a few problems and another poorly eaten breakfast. Chris attended school before going to the clinic. It was a bit risky, but it paid off. All of Chris' blood counts dropped from Monday's test. Logic dictates that his counts should be dropping after last week's chemotherapy. Today's blood results were: white blood cells remained at 3.2 (normal: 4.0 - 12.0), hemoglobin dropped to 10.7 (normal: 11.5 - 14.5), platelets dropped to 33 (normal: 150 - 450), while the ANC dropped to 1100 (normal: 1400 - 7400). Theoretically, Chris is supposed to start another chemo cycle of Temodal on Monday but we'll speak with the doctor first. It seems like the timing might be off a bit. Chris should be heading towards nadir (the lowest part of the blood count drop) at that time and we were hoping to test his ability to mobilize peripheral stem cells for possible collection by doing a CD-34 test. We'll see . . .

Chris has been picking at food all day. He's trying to eat but his appetite is definitely suppressed. He has lost a half a kilogram since Monday. Still, he is doing remarkably well (relatively speaking) and has not suffered from dehydration despite about 4 days of liquid diarrhea. He had two mini dinners tonight: after his class and then after the performance.

Medically, Chris continues to deal with the nausea, rumbly tummies, cramps, and diarrhea. As noted above, Chris' weight has dropped slightly.

Joke of the day -- Marathon runners with bad footwear suffer the agony of "de-feat."

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, November 5, 2003 8:56 PM CST

Hi Everybuddy!

Chris had a long day at school today; in addition to the regular classwork, he had to sit through Dad's attendance at the School Advisory Council meeting. His day had another unpleasant start which required medication for the continuing nausea, diarrhea, and cramping. He still hasn't made it through a whole breakfast this week. In a little better news though, Chris didn't have any significant problems throughout the rest of the day, but did for a few bouts of diarrhea. He did a good job muddling through lunch (a pizza roll) and in reciting his verse from Thoreau. We'll get to see the real performance tomorrow night.

Dad sneaked a snack to Chris when the guys went to the school's library. Given his current digestive woes, it is especially important to keep him drinking. Chris managed to do his homework and then help a fifth grader with his math homework. Chris was finished just as Dad started his two presentations at the meeting. One concerned a suggestion for a new traffic flow plan at the school in order to facilitate safety during drop off and pick up times. The second presentation was lengthy and concerned starting a student volunteer program in the school. Chris would occasionally wave to Dad (who would wave back), which would crack up some of the council members (many of whom bring their kids). Chris also was notedly happy when they decided to pursue Dad's plan. Chris volunteered to be the kids' representative to a committee.

After all that sitting around quietly, Chris needed a "Genie break," so the guys went home to goof off. They then watched a new DVD, "Finding Nemo" while munching on popcorn. Unfortunately Chris didn't eat much of the stuff. Still, he ate some and every little bit helps. The guys then went out to pick up a new blue T-shirt for Chris to wear at tomorrow's school program.

After shopping successfully, Chris asked for some pizza. Dad and Chris headed to Pizza Hut and managed to contact Mom, who was enroute home (she was later than usual because she had attended a cheerleading competition in which one of her coworkers' child participated). She said that she could meet the guys there because it took some time for the pizza to cook. Chris started into his first piece of pizza not too long after taking a Zofran for nausea. Although he didn't seem to feel nauseated, Chris quickly lost energy, and it wasn't long before he leaned against Mom or tried to lay down on the bench seat. Our server, his favorite sever, is also a cancer survivor, understood exactly how he felt (he picked around at the cheese) and just had to give him a hug on his way out tonight. He perked up just a bit when we got home, where he had a mini-"dog pile" with Genie.

Joke of the day -- What is the most tired part of your car? The exhaust pipe.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, November 4, 2003 9:35 PM CST

Hi Everybuddy!

Chris had a rough start this morning and needed medication for the continuing nausea, serious (liquid) diarrhea, and cramping. He didn't even make it through his breakfast of a cinnamon apple. Things settled down in time for him to go to school. His day remained a little exciting; Dad received a call from the school nurse after Chris finished vomiting and diarrhea. He handled the matter by himself (talk about a battle hardened veteran -- he's actually been at this longer than the US fought in World War II). After conferring with Dad, Chris and the school nurse decided to forego another dose of medication for those ailments. Chris made it through the remainder of the day and even ate a lunch consisting of a State Fair corn dog, applesauce, and a diet Brisk ice tea (not sure why he chose a diet drink . . .).

Chris was happy when Dad picked him up from school. He didn't have too much homework. The guys then went by McDonalds to get Chris a kid's meal; he was still hungry. We have learned to let him eat whenever he can during times like these. Afterwards, the guys headed straight home since Chris needed to get what little homework he had done before CCD ("God school") and the Webelos den meeting. Chris happened to find a surprise on his car seat: a Boy Scout harmonica. He's been wanting one for quite a while. They can only be purchased at the Boy Scout store, so he had to wait until the next time one of us was in the vicinity. He got it for doing such a good job through this last chemo cycle.

At "God school," Chris and his classmates created some religious art out of felt. Chris made a fish. It got brilliant colors and good symbolism but it's the first fish that we've ever seen with eye brows and a ponytail. Interesting . . ..

Once they arrived home from "God school," Dad received a phone call from Chris' den leader who wasn't going to be able to be at tonight's meeting. Since he was responsible for all the training that night, the den leader asked Dad and another Dad to fill in for him. Fortunately, the scouts were to work on a pin that Chris had already earned through the Lone Scout program, so Chris and Dad brushed off their previous effort and presented information on nature and habitats tonight.

We tried to take Chris out for a full dinner but the only thing he could handle was a little bit of a brownie. He took another dose of Zofran for his tummy and once home, he took another Imodium AD after a bout of diarrhea. It has not been a fun time for him. Chris was a little "out of it" tonight and didn't even request a "dog pile." He and Mom rechecked his homework and it was off to bed; he fell asleep right away.

Joke of the day -- Why did the movie star go to the river? She wanted to give out some otter-graphs.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, November 3, 2003 9:05 PM CST

Hi Everybuddy!

Today was a "backwards" day from how we normally do clinic days. Chris attended school before the clinic because we felt that his platelets and ANC would be high enough to be safe. This was justified; all of Chris' blood counts rose from those of last Friday. Logic dictates that his counts should be dropping. Chris always has a different way of doing things. Today's blood results were: white blood cells rose to 3.2 (normal: 4.0 - 12.0), hemoglobin rose to 11.7 (normal: 11.5 - 14.5), platelets rose to 74 (normal: 150 - 450) (probably as a result of last Friday's infusion), while the ANC rose to 1400 (normal: 1400 - 7400). These were unanticipated results but in a good way; everyone was pretty happy about them. We also got word from New York that Chris is still HAMA (+) so he can't receive antibody treatments there yet, even if that were appropriate at this stage.

For a change, Chris started the day with his class in the classroom. Dad went in to tell the teacher that Chris was suffering from some side effects. Chris completed his training to be a peer mediator so he'll soon be ready for "cases." He'll be able to wear a special mediator t-shirt on mediation days. After school, Dad picked up Chris from the classroom, where he also coordinated some things in advance of a briefing that Dad is to provide on Wednesday. In the course of doing that, Chris' teacher told Dad that Chris had been selected to do a Henry David Thoreau recitation on Thursday's school program. Chris rattled it off a few times for Dad with feeling. He didn't think that he could memorize it, but he did. Chris clenched a little bit when he called Grandma and Grandpa to use them as guinea pigs, and he struggled when he tried to recite it for Mom later this evening. He and Mom worked on it for a while this evening but Mom doesn't think that he's got it "solidly" memorized yet. We'll work with him on it for the next few days so that he's ready on Thursday. It's a work in progress but we think that he'll do fine. He and Dad went on the Internet to learn more about Thoreau and to help gain understanding and perspective.

Medically, Chris is doing his usual good job of gutting it through the nausea, rumbly tummies, cramps, and serious diarrhea. Mom and Dad try to act like it's no big deal when we're around him to help Chris keep his good attitude. Chris really endures a lot and with little complaint. Today was a bad day for diarrhea, and despite the drop in his appetite, Chris' weight is still pretty consistent.

Joke of the day -- Chris of course worked on memorizing his piece from Thoreau and has already "modified" it. According to Chris, Henry David Thoreau wrote, "If a man does not keep pace with his companions, perhaps it is because . . . he's not listening." Actually the passage goes "...it is because he hears a different drummer. Let him step to the music which he hears, however measured or far away." We hope that Chris recites it correctly on Thursday, but we may also see how many parents are actually paying attention. One never can tell what Chris is going to do . . ..

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, November 2, 2003 8:53 PM CST

Hi Everybuddy!

Chris was somewhat quiet all day today. His day started out somewhat normal although he ate just a little breakfast. Soon after Mom and Chris arrived at church, they had to return home due to Chris feeling very nauseated. He took some Zofran and laid down for a while. Eventually he was up and about again, although generally quiet throughout the day. Chris spent the rest of his morning either playing video games or working on religious education, including for the Cub Scout program.

At around lunchtime, we decided to go see the new Disney movie, "Brother Bear." We enjoyed the movie, which was good but not an A+ (maybe in part it earned such a grade because Chris keeps reminding us that he's a "pre-teen" now and "prefers" to see PG movies instead of G ones). After the movie, we attended to some shopping chores. Then we headed home because Chris seemed to have lost much of his energy. Chris actually had to contend with several bouts of stomach cramps, a lot of diarrhea, and a little bit of nausea throughout the day. He never had to vomit, but it is obvious that Chris has entered his post-chemotherapy side effect period.

During a moment when Chris felt a little better, he wanted to practice a game of "catch" in the house with a softer ball. Well, what kind of dog would Genie be if she didn't try to play "catch" too? No one had explained the rules of the game to Genie (Chris wanted to practice so that he would be better the next time his friend Greg comes over to visit). Genie thought that making interceptions of the ball was perfectly acceptable behavior. Her escapades ended up adding a lot of humor to the game, and gave Mom and Chris a very wet (with drool) ball with which to play. The game eventually ended when Chris rolled over on the floor as a result of stomach cramps. He was ok in the end, though.

Actually, in spite of the diarrhea, cramping, and nausea, Chris is doing fairly well. All things considered, his appetite and energy are still reasonably good (he only ate 1 slice of pizza at dinner tonight, which is indicative of problems, but he seems to be eating enough to maintain his weight). He also isn't constantly in the bathroom. He does an excellent job of taking it all in stride.

Joke of the day -- What do you get when you cross a sheep and an ape? A BAAAAAA-BOON!

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, November 1, 2003 9:10 PM CST

Hi Everybuddy!

Chris had a pretty nice day. The weather was good for launching rockets at this morning's Cub Scout "Space Race." Both of Chris' flew well, especially the one that he dubbed "Atomic." We had an early morning start since the launching began at a nearby high school at 8:30 a.m. Chris' rockets flew true, high, were quick off the pad and landed safely every time they went up. He had a good time, as did all the scouts who participated. The boys enjoyed chasing the rockets as they came back down to earth. We all enjoyed the outing.

Chris linked up with Greg at the launch site (Greg came later because of a soccer game). The two made plans for Greg to come over to our house this afternoon. He did so after finishing his homework. The guys played some videos games and "terrorized" the dog (she expected and enjoyed that) before moving on to building a "ballpark" in our backyard. Actually, we expect to lay out some sort of a "sports field" back there next June so that the Webelos can earn their sportsman pins, but we weren't ready to do much with it today. Chris and Greg had a lot of fun doing it and worked hard. Mom later went back there and watch a "game" for a while. Genie was back there with them too, although she wasn't too much help since she had worn herself out by running like a mad dog all over the yard while the boys made the bases for the baseball game. Genie also by then pretty much tied up Mom's attention when a neighbor cat came over to watch the game, too.

Soon after Greg left, we headed out to Mom's favorite barbecue place. Chris hemmed and hawed about the menu (not being a devotee to barbecue yet) but finally settled for the chicken fingers (now that was a surprise . . .).

Medically, Chris is doing pretty well, all things considered. He is contending with some significant diarrhea side effects and a rumbly tummy. He has occasional skirmishes with nausea but so far no vomiting.

Joke of the day -- What do you get if you cross a centipede with a chicken? Enough drumsticks for an army.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, October 31, 2003 9:23 PM CST

Hi Everybuddy!

Chris' day was a clinic day, to say the least. Chris made a trip to the Tampa clinic for both a routine blood test and his last dose of Irinotecan for this cycle. Today's blood results were: white blood cells dropped to 2.1 (normal: 4.0 - 12.0), hemoglobin dropped to 10.4 (normal: 11.5 - 14.5), platelets dropped to 29 (normal: 150 - 450), while the ANC dropped to 1200 (normal: 1400 - 7400). These were not anticipated but a pretty fair drop from Wednesday's results and a bit of a surprise. Since Chris had some directed donor platelets that were to expire today, the doctor decided that he should come back after school to receive a transfusion. Actually, there were two sets and one set went to another lucky kid at All Children's Hospital (thanks blood team!).

Chris got an opportunity to "trick or treat" throughout the extensive Tampa clinic. The kids (patients) came to clinic in their costumes. Chris went there dressed as Tom Sawyer, complete with a plethora of freckles. Most of the medical staff got the idea but thought that he was Huckleberry Finn. The entire work area within the clinic had people dressed in costumes to hand out candy to the kids. Initially, Chris wasn't going to go, but since some girls his age decided to go, he went too.

Later Chris actually linked up with his class in the classroom. Unfortunately, Chris missed another Accelerated Reading awards party (he has qualified for four such parties before, but has only been able to go to three because of medical appointments). He now has another "dog tag" (this one shaped like a fire hydrant) to add to his dog tag collection. Much of today apparently involved a class party. Interestingly, his goody bag, filled with things submitted by parents, came complete with an electric tooth brush, tooth paste and dental floss (one of the parents must be a dentist!). He also got a special treat from his PE coach.

The big news that Chris was really eager to spread was that he was named a "Peer Mediator" for his class. Dad had never heard of that job, but all the nurses had. They said that he'd be a good one, too -- it's a good fit. Apparently there are several in each classroom and they help to settle disputes at the "kid level" early on so that they don't develop into enormous problems. Peer mediators are now in classrooms at every level all the way through high school, at least in this county.

The second session at the Tampa clinic again lasted a few hours for the platelet transfusion. Chris was the only kid there. They treated him really special and offered him candy (which he declined). They were very impressed that he was selected to be a peer mediator, and Chris was very proud of his new role himself. He's very excited about it and intends to study his handbook over the weekend in hopes of being able to perform his new duties as quickly as possible.

The guys got home a little bit before Mom because of the transfusion. The original plan was for Chris and Mom to go to dinner at our nearby Pizza Hut in order to take advantage of the Halloween Party there. Chris, however, wasn't feeling so well at that moment, and decided that he was too tired for pizza. He came back into the house and nearly fell fast asleep on the couch within seconds. We almost let a sleeping child lie, but Dad kept talking to him in order to keep him awake. Chris, was may have been experiencing residual effects of Benedryl at the time (sleepy and a bit out of sorts), and it was only about 6 p.m.: too early to go to bed for the night and expect to stay asleep throughout the night and he would have missed trick-or-treating (it's not the end of the world, but he ought to at least be given a decent opportunity to try it). Eventually, Chris snapped out of it and asked to go trick or treating so that he could collect some candy for the kids in the hospital (he does this every year). He really surprised Mom because he used his scooter tonight to get from house to house. As a result, he was able to go further than he ever has before. Even then though, he was only gone about 45 minutes and had quit after going around about 1/2 of that particular subdivision. Still, Chris and Mom enjoyed the experience, especially those houses that were rigged with spooky lights and sound effects.

Chris also spoke briefly with both sets of grandparents, sharing his excitement about being selected as a peer mediator. We think that they were duly impressed.

Medically, Chris is doing pretty well, all things considered. He has occasional skirmishes with nausea, and his tummy is very rumbly, but he hasn't vomited. He has had no other problems today.

Joke of the day -- Why wasn't there any food left after the monster party? Because everyone was goblin.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, October 30, 2003 8:55 PM CST

Hi Everybuddy!

Chris was feeling better this morning despite yesterday's cramps, nausea, and diarrhea as he ate all of his morning chocolate chip pancakes. The scale in the clinic shows that he's holding his weight. Today, Chris just received his fourth dose of Irinotecan for this cycle. He received his chemo dose without incident, during which he watched the movie, "Lord of the Rings II." That movie is so long that he'll be watching it again tomorrow.

Chris and Dad made a brief stop at McDonalds on the way to school since this dose was started late and his class was already at lunch (or so we thought). When Chris got to school, the guys actually found his class in the lunchroom. His favorite lunchroom lady had saved him a piece of cheese pizza. He has it made!.

When Dad picked up Chris after school, the guys headed over to a hobby shop to pickup some decals and glue for Chris' last rocket which he'll fly on Saturday at the Cub Scouts' "Space Race." They're both ready now.

Chris' homework consisted of some reading skills work that reinforced lessons on determining cause and effect. He's pretty good at that type of analysis. While Dad worked on getting the last things done on the crashed computer, Chris played his new Spongebob game, then switched around to several other games.

Chris spoke with Grannylin tonight and thanked her for some Halloween fun. They talked about a bunch of stuff, including their dogs (Grannylin and Granddad have a new dog). Speaking of dogs, Genie apparently didn't want to be left out of the conversation. A few bites of leftover chicken tenders had been put into her dog bowl when the telephone rang. Since she usually only gets dogfood, Genie looked a little surprised. She picked up about 4 bite-sized pieces and carried all of them around in her mouth for a couple of minutes, as if she were looking for just the right place to enjoy them. She ended up bringing them right back to the kitchen, where she dropped them on the floor near her dog bowl so that she could chew them. It was funny, but you had to be there to appreciate the scene.

Medically, Chris seems to be doing rather well. Except for a little nausea, he had no problems today. His hair is starting to thin on the back of his head now, but most of it is still there. He doesn't seem to mind it.

Joke of the day -- Why do ghosts like to ride elevators? It raises their spirits.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, October 29, 2003 9:02 PM CST

Hi Everybuddy!

Genie and Chris must have made a pact about morning wake-ups; now all she seems to want to do is lay on the bed beside him. Chris ate only about half of his morning chocolate chip pancakes, so his morning eating habits are beginning to slip. Chris made a trip to the Tampa clinic for both a routine blood test and his third dose of Irinotecan for this cycle. Today's blood results were: white blood cells rose to 2.6 (normal: 4.0 - 12.0), hemoglobin rose to 11.4 (normal: 11.5 - 14.5), platelets remained at 39 (normal: 150 - 450), while the ANC rose to 1600 (normal: 1400 - 7400). These increases were a bit of a surprise. All the medical staff could say was something like, "Well, it's just like Chris." He received his chemo dose without incident, during which he watched the movie, "Men in Black II" and part of the movie "The Mummy Returns." He was medically cleared to go on to school again today.

Chris and Dad made a brief stop at McDonalds just because Chris asked to do so. Between chemo and getting a flu shot this week, Dad's been easy. Again at school, they went on a hunt for his class, and found them moving toward the lunchroom. Chris did not eat a second lunch but get a drink. He knows that he must drink a lot of fluids this week.

When Dad picked up Chris after school, he learned that Chris hadn't missed much in the morning again. He assured Dad that he had everything that he needed to do his homework when Dad picked him up this afternoon (anticipating the natural question Dad guessed). His homework was math, and Chris did a pretty good job on it. The next stop was the pet store to get Genie a new rope toy. She had destroyed her older one (well, with a little help from the rest of us who tossed it about). Chris also got her some realistic looking cookie snacks. She loves them. Afterwards, the guys stopped by the drug store to pick up some more medicine for him. His fan club was there in force to wish him well.

Once home, Chris had a snack and then moved straight into doing his math homework. He then tried out his new Spongebob game. Chris and Dad also did more work on Chris' two rocket ships, which he'll launch with his Cub Scout pack on Saturday. The pack provides the kits that the kids build. On launch day, the pack also provides the motors, launch tower, and ignition system. Chris received a very nice card from honorary "Aunt" Cathy in the mail again.

We had some other shopping to do once Mom got home, so we ate out at our nearby Pizza Hut. We were met there by Chris' favorite server (herself a cancer survivor). As usual, he was treated like a king. The two really get along well. Chris called Grannylin and Granddad from the restaurant to say thanks and share a joke or two, but missed them for now.

Joke of the day -- Why were the trick-or-treaters wearing grass skirts? Because it was Hula-ween.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, October 28, 2003 9:15 PM CST

Hi Everybuddy!

Chris had a weird day. It started out nice enough with the dog jumping on the bed and just snuggling up next to him. Chris and Dad made the trip to the Tampa clinic for the second dose of Irinotecan for this cycle. Unfortunately, the pharmacist didn't arrive until about an hour later. Chris and Dad spent their downtime playing hackie-sack baseball and then some Uno.

Chris and Dad headed off to school just as soon as Chris finished his chemotherapy infusion. When they arrived at his classroom, they discovered that his classmates weren't there. Chris and Dad then went to the lunch room, playground, music room, and still no class. A frustrated Chris (still carrying his rucksack) said, "Hmm, there is only one other place they could be." They were there, in the multipurpose room.

When Dad picked up Chris after school, Chris was happy because he had been served "Chicken fries" for lunch. We don't know what exactly they are (probably better that way . . .), but he sure likes them. Before leaving the school grounds, Dad asked Chris a couple of times if he had everything he needed for homework. Chris replied that he did. Then the two of them went shopping to price some new software and to pick up a game with some of Grannylin and Granddad's fun money. He got a Spongebob game that he's had on his "wish list." Thanks!

While driving home, Chris let out a big, "Oh no" and then moaned. Dad immediately thought two things: either Chris has a chemo-related problem or he's forgotten something at school (Chris made that same exclamation once earlier this year). Fortunately, it was the latter. The guys then headed back to school, but found the classroom locked. The cleaning team would not let him in. They then went to see the departing Assistant Principal, who wrote a note authorizing the cleaning team to open the classroom door. On the way back to the cleaning team, the guys found Chris' teacher who was working late. She got him squared away. Although Dad was disappointed with Chris' forgetfulness, Chris did all the talking with the adults to rectify the problem, which was impressive.

By the time they left the school, there was just enough time to run home to pick up the "God School" books and get him to class. We had signed up to provide refreshments for one class, but the teacher hadn't had the sign-up sheet available for a while. Dad had a premonition and told Chris that if we were supposed to have provided the snacks to give him a call. Chris called Dad about twenty minutes later. Fortunately, we maintain "contingency snacks" for the Cub Scout events, so Dad brought snacks over to the CCD classroom, saving the day.

Once home for good tonight, Chris had a snack and then started on his homework. He and Genie laid on the couch reading (ok, it was Chris doing the reading, not Genie -- she's a smart dog, but not quite reading yet . . . ) the homework assignment. Mom came home, so Chris and Mom worked on finishing up the writing requirement.

Chris needed some Zofran this evening after dinner before he got a second wind. He danced and participated in a "dog pile" before collapsing and falling almost immediately to sleep tonight.

Joke of the day -- What's a ghost's favorite lunch meat? Boo-loney!

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, October 27, 2003 9:01 PM CST

Hi Everybuddy!

Chris simply got a dog to snuggle with this morning. She wanted to awaken him early though and whined a little outside his bedroom door. After he really got up, Chris made a trip to the Tampa clinic for both a routine and a full panel blood test, doctor's exam and then the first dose of Irinotecan for this cycle. Today's blood results were: white blood cells dropped to 2.2 (normal: 4.0 - 12.0), hemoglobin dropped to 11.1 (normal: 11.5 - 14.5), platelets rose to 39 (normal: 150 - 450), while the ANC rose to 800 (normal: 1400 - 7400). He was medically cleared to start his next cycle of Irinotecan and then to go on to school. The blood counts were just barely sufficient to do so,

Dad and the oncologist reviewed the MIBG and CT scan reports from May to now, looking for trends. There is evidence that something (unspecified) is now going on in another lobe of his liver. After carefully comparing the CT results, they were pretty sure that the Irinotecan reduced the liver lesions (i.e., tumors) after two cycles. At the time of the scan, the Temodal had insufficient time to influence anything, We spoke about forming a "team" of physicians to look at options in treating his liver specifically. The doctor is also going to look at some new options for possibly harvesting his bone marrow stem cells again, perhaps after this current cycle of Irinotecan.

Chris and Dad made a brief stop at McDonalds since Chris' class was already at lunch when the guys got released from the clinic after the chemotherapy infusion. Once at school, they learned that his class hadn't returned to the classroom, so the guys went to the lunchroom to see if they were still there. They weren't, but Dad was able to meet one of the "lunch ladies," who wanted to ensure that Chris had eaten and to pass on that she just loved Chris. The guys found the classmates for some reason in the art classroom.

When Dad picked up Chris after school, he learned that Chris hadn't missed much in the morning (they apparently reviewed something that he had already learned). His homework wasn't too extensive either. On the way through the church area, the pastor offered Chris some candy (which Chris declined) and then told Chris by name to have a nice afternoon. We have no idea how he knows Chris' name, but apparently Chris and Dad need to go back to Spy School for Spy 101. Chris is going to look for some special candy to drop off there next time.

Once home, Chris had a snack, played some video games before starting on his math homework. He and Genie spent much of the afternoon playing quietly in the den while Dad participated in a telephone interview. Chris and Dad also worked on some tasks toward earning a cub Scouts Artist pin. Chris enjoyed drawing on the computer. Chris also received two very nice cards from "Aunt" Cathy and Grannylin and Granddad. Thanks!

Joke of the day -- What monster flies his kite in a rain storm? � Benjamin Frankenstein.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, October 26, 2003 9:05 PM CST

Hi Everybuddy!

Today, Chris got the whole gang for wake up, Mom, Genie, and Dad. Geesh! It didn't work as well as we expected because Chris had such a late night between the hockey game and a sleepover with his friend Greg.

This morning's agenda included going to church, lunch at a restaurant (where they thankfully served pizza), and attending a Weight Watchers meeting with Mom. Once all of that was over, we got together again back home, where Mom triied to recover from a dizzying headache during the afternoon. Chris and Dad goofed off or played video games (Dad watching) for a while while Mom tried to sleep. Chris is really getting into a new game in which a small boy tries to save his village from the exploits of an evil shaman. The graphics are great, the tasks challenging and the character discussion humorous. Other than that (and the occasional "dog pile"), it was a very quiet day.

Medically, Chris felt well and didn't have any problems although he just isn't as energetic as he usually is. He said that he is ready to begin next week's chemo cycle of Irinotecan.

Joke of the day -- Dad pointed out to Chris that Genie woke him up early even though we reset the clocks for daylight saving time. We figured out why -- she didn't understand the new time because she isn't a "watch" dog.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, October 25, 2003 11:45 PM CDT

Hi Everybuddy!

Genie was initially disappointed this morning as she and Dad bumped into Chris in the kitchen. They were sneaking over to his room to wake him up. Chris noted her disappointment and went back to bed, just so she could do her morning work. She had both of them in stitches when she was just getting ready to jump off the bed and Dad said, "Genie" in an authoritative voice that only a Dad can do. She froze in her pre-jump position for about three seconds before her momentum carried her off the side of the bed.

One of Chris' goals today was to try and finish one particular video game. He came really close in the morning. Before he could do so, Dad came and got him to go swimming. The guys wore wetsuits because the water was a cool 68 degrees although it was still warm enough to swim. Chris retook his Cub Scout swimming test (in good fashion) and then invented a game in which he and Dad stood on kickboards and executed skateboard moves in the water (e.g., 50/50 grinds, nose grabs, 50, etc.). It was challenging as well as good exercise. After about forty minutes, it was a little cool for the guys. Mom missed out on the merriment since she had Army Reserve drill and then a wedding to attend.

Not too long after eating lunch after the swim, Greg arrived. Initially, he and Chris played a video game. Then they tormented the dog with a string of dog pile games. After that, they watched some TV before tormenting the dog with a remote controlled car. Genie loved it all, of course.

Before too long, it was time to pick up our friend Cate and head out to see a Tampa Lightning hockey game. One of the star players is a big personal supporter of kid cancer patients. That was evident tonight for as very soon after the game (which the Florida team won and he was the second most valuable player), he spoke with the kids, had pictures taken and signed autographs. What sets him apart from the many "celebrities" we've met is that he seems to really be interested in the kids. Chris gave him his usual happy face pin and Dad even gave him the children cancer awareness ribbon pin that he's had for years. He was a nice guy. There was a TV in this player's box that he let the kids use, through which the guys learned that yet another Florida team did well tonight, the Marlins!

After dropping Cate off, the guys got home in just enough time to beat Mom home (she attended the evening reception after the wedding). The guys surprised her in a darkened house. Soon afterward, the two boys retired to Chris' room to watch a movie. We'll see how long they last after all of today's excitement.

Joke of the day -- What do ghosts wear to keep their feet dry when its raining? Ghoulashes.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, October 24, 2003 9:15 PM CDT

Hi Everybuddy!

Genie was very eager to awaken Chris this morning, going so far as to try and con Mom or Dad into wakening him early. It didn't work. When it was time, she even dragged her rope toy all the way to his bedroom door. Once the door was opened, she dropped the toy and just laid down at the foot of his bed. Talk about anticlimactic . . .

Chris is really beginning to enjoy chocolate chip pancakes. He normally isn't too keen on candy but he seems to be making a breakfast exception.

Chris told Dad that his class had a substitute teacher today who was very harsh. He did away with the usual class discipline system (similar to soccer penalty cards) and told the kids, "One strike and you're out!" As a result, Chris wasn't his usual chipper self on a Fun Day Friday pick up after school. Still, he seemed to get over that quickly and was back to being goofy by the time the guys got home. After walking Genie, Chris and Dad wanted to start on a computer project for Webelos but the old computers are still being difficult.

Chris ended up playing a video game; he reports that he is close to winning. The guys also competed in a few bull piles and dog piles, too. Dog piles and Alpha Dog competitions were the way of the day. When Mom got home, there were several more. Tonight's game of Alpha Dog was hysterical, with Chris sitting on the floor and Genie circling her "prey." She has the rare ability to nibble on someone without hurting (well, not too badly). Chris says that it pinches and tickles at the same time. Since he kept one game going for twenty minutes (thus wearing Genie out), it must not pinch too badly.

Joke of the day -- What do you call a witch in the desert? A sandwich.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, October 23, 2003 9:48 PM CDT

Hi Everybuddy!

Genie got Chris good this morning: a wet nose on a sleeping nose. That got him going! She then just laid next to him on the bed until breakfast was ready. Chris made a trip to the Tampa clinic for a routine blood test. Today's blood results were: white blood cells rose to 2.4 (normal: 4.0 - 12.0), hemoglobin rose to 12.2 (normal: 11.5 - 14.5), platelets rose to 35 (normal: 150 - 450), while the ANC dropped to 700 (normal: 1400 - 7400). He was medically cleared to go to school. The counts are improving just a tad, but of course he is slated to start another cycle of Irinotecan on Monday . . .

Dad received the final report of Chris' MIBG scan; it is terribly vague. The CT scan report was not released, but Dad noted that the two liver tumors appeared smaller in size and the lower left lobe is still causing confusion. Dad left some parameters for beginning the next cycle of Irinotecan, the main one being anyone's reasonable estimate on its effectiveness. Why subject Chris to it if it isn't working? There may be a synergistic effect between it and the Temodal, so we're waiting to hear what the oncologist has to say about the subject on Monday.

Chris' next stop was school. When the guys got to his classroom, it was locked. But another fourth grade teacher (who happens to be the mother of Chris' teacher and who is also a fourth grade teacher herself) escorted Chris to an assembly. Later, Chris' teacher called Mom to talk about Chris' noticeably declining level of concentration and energy. The best guess is that this could be a result of a combination of things: residual effects of chemotherapy, Chris' concern about two classmates who have been pressuring him lately, and Chris' concern about perhaps not fully understanding what is going on in the classroom as a result of his frequent absences and especially tardies. The teacher agreed to help monitor the situation and passed along this information to the school's psychologist who has been very supportive to Chris.

When Dad picked up Chris after school, the pastor of the church next door was handing out candy to the students. He called out to Chris by name and asked him to have a nice evening. Chris thinks that he's cool. Thereafter, Chris and Dad had some shopping errands to do. While doing so, Chris mentioned that he was hungry. Because they were reasonably close to Mel's Hot Dogs, the guys just "had" to stop there. Earlier Chris gave Mel (a pilot) a key ring device that looks like a red flag and says "Remove Before Flight." Mel told him that he loves it and he thinks about Chris every time he pulls out his keys. Mel calls it his "Chris flag."

Once home, Chris walked Genie, who went "squirrel hunting" (Genie thinks her true mission in life is to hunt squirrels). Of course, we never let her come close to a squirrel, all which have a right to live in our trees. She hasn't caught on about that yet, and she seems to forget about the fact that she's usually hooked up to a leash whenever she heads out on a "squirrel hunt." Then Chris made a big move on his homework: a writing assignment. The first attempt was so unimaginative that Dad had him rewrite the thing. His second offering was much better; it was both imaginative and funny. It still needed Mom's mentoring later in the evening. Chris also got a call from his gaming mentor, Uncle Jonathan, who gave him some good tactical ideas for the game. Chris worked on them for a short time before it was time for Cub Scouts.

Chris also received a very special package today from the parents of one of his friends with whom he used to go to treatment. Everything was "awesome." Kris and Kevin always know what's right -- they are both teachers! He even loved the comic pages from the newspapers that they used to wrap the contents. Thanks Kris and Kevin! We hope to visit them during a conference they're attending elsewhere in Florida later this fall.

Tonight was also the Cub Scout pack meeting, so there were lots of scouts present. Chris' den did a good job performing the opening and closing flag ceremonies. Chris received his Citizenship, Handyman, and Readyman pins. He had a good time with Greg and talked about this coming Saturday. That's when Chris, Greg, and Dad are to attend a Tampa Lightning hockey game. Greg will spend the night, too. One of the hockey players offered up his box seats to pediatric cancer patients.

Joke of the day -- Why did Dracula break up with his sweetie? She wasn't his blood type.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, October 22, 2003 9:35 PM CDT

Hi Everybuddy!

Chris had a good morning without any nausea problems. Perhaps this could be due to the fact Dad fixed a milder breakfast choice of chocolate chip pancakes (go figure).

Chris also had a good day at school. He was all smiles when Dad picked him up in the afternoon. It was report card day; he has an even split of A's and B's. He also received a reading award and a citizenship award. The smiles were warranted given the rocky start to this semester, which has been punctuated by numerous missed and tardy days (due to hospital stays, medical appointments and testing). In the grand scheme of things, he did very well. The citizenship award essentially focused on class behavior. Despite all that has happened to him, people still come up to Dad and say what a pleasure Chris is to be around. Walking back through the church located next to the school, the pastor made a point of saying hi to Chris by name. He was nice enough to keep Chris' secret though and didn't tie Chris in with the anonymous candy man.

The guys went right home this afternoon, where Chris had a snack before diving right into doing his homework. He wanted the afternoon for himself, knowing that our friend, Cate, was coming over for dinner. He called Mom at her office to let her know about his report card.

Chris spent some of the afternoon playing a variety of games and took some time to go with Dad to pick up a computer that had failed (and was repaired). No sooner did the guys get that machine home than our old reliable laptop (the one that went with us on our cross-country travels in 1997) began showing signs of problems. We figure that it must be about time on that one . . . Chris decided to wait on doing some Internet research that he was going to do for Cub Scouts. Sometimes it's just that way.

Chris goofed off with Cate a bit before she started working on a project with Mom and Dad. He got a special dinner tonight of two favorites: pizza and carrot cake. He spoke to Grandma and Grandpa, who called tonight just to say hi. Oh, and it sounded like he also said hi to their dog Casey, who perhaps might have been listening in on the conversation?!?

Joke of the day -- Why doesn't anybody like Dracula? He has a bat temper.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, October 21, 2003 9:37 PM CDT

Hi Everybuddy!

Chris has been having some peculiar mornings recently. This morning, as in the past couple of days (since the last cycle of chemo ended), he ate just a little breakfast then got nauseous. Yesterday, he lost his breakfast on the way to the clinic; today he needed some Zofran to retain the little he had eaten. Other than that, the morning went nicely.

Chris had a good time at school today; he didn't get into the middle of any squabbles between friends but he is slated to participate in a student mediation soon. The school nurse called Dad once because somehow Chris had sprung his medical alert bracelet and she couldn't get it back together (hmm, seemed to Dad like Chris could have been referred to the school maintenance guy . . .). The school nurse is very attentive to Chris. When she sent him back to class with the bracelet in his pocket, she wanted to make sure that Dad knew there was some repair work to do (which he did).

Once the guys got home this afternoon, Chris went right to work on his homework since it was "Terrible Tuesday." His afternoon was jammed packed with homework, "God School" and Cub Scouts. At "God School," Chris played Adam in a skit about Adam and Eve while his friend Greg (also in his class) played the tree. Hmm.

Tonight's Cub Scout meeting was focused on citizenship and the boys learned how to fold the American flag. Chris finished all the tasks for the citizenship pin. Even though Chris finished all of the requirements for the Webelos badge, his den leader asked if Chris could wait until next month when he feels the rest of the den will be qualified to receive the badge -- just to keep everybody on track together. Chris, being Chris, said that he didn't mind.

Joke of the day -- What does a ghost eat for breakfast? Scream of wheat.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, October 20, 2003 9:12 PM CDT

Hi Everybuddy!

Genie the wonder dog was pretty mild on her wakeup duties: she just jumped on Chris' bed and laid next to him. Maybe it was just to keep things gentle this morning since Uncle Jonathan had to leave well before Chris woke up to go to school. In any event, it all went well. Chris' first substantive duty of the day was a routine blood test. For some reason, his temperature only registered at about 35.4 C (95.72 F). After several attempts to find what was thought to be a more accurate temperature, the medical staff settled with that one. Today's blood results were: white blood cells held at 2.2 (normal: 4.0 - 12.0), hemoglobin rose to 11.9 (normal: 11.5 - 14.5), platelets dropped to 28 (normal: 150 - 450), while the ANC held at 800 (normal: 1400 - 7400). His counts seem to be holding just above the thresholds for action. Although his hemoglobin count continues to rise, Chris still tires easily. He had one significant incident on the way to the clinic which required use of the "barf bin." Once the cookies had been tossed and he got himself cleaned up, Chris said that he felt great. Dad did not receive any further reports regarding this cycle's scans. We have not been impressed by the radiology department's sloth this time around. While at the clinic, Chris also donated some new toys to its "treasure chest."

After leaving the clinic and on the way to school, Dad stopped to get Chris a snack to make up for the lost breakfast. After dropping Chris off at school, Dad happened to see the pastor of the church next to the school. Dad asked how the church's weekend bazaar went. It went well. The pastor asked if our son's name was Chris; Dad said, "Yes." He then asked if he happened to be the one donating bags of candy; Dad said, "Maybe." The pastor laughed. Chris was apparently correct when he said that the pastor had discovered our secret. Neither of the guys know how he knew Chris' name or that Chris had been dropping off candy. It's one of those great mysteries of life . . .

When Dad picked up Chris after school, he noticed that Chris had a bruise on his head. When asked what happened, Chris explained that he had walked into a pole. Dad checked with the teacher in order to see how Chris had been acting/feeling. She said, "Normally." She also verified that he had walked into a pole (he was talking to a friend at the time). With platelets this low, we've got to check out any head bumps (fortunately, Chris' head isn't too much like a banana). What the teacher apparently didn't see though was that Chris felt tired at least once today at school. (Chris later admitted to Mom that he put his head down on his desk and quietly cried for a few moments before moving on with his school activities. Unbeknownst to him, Chris had apparently been selected by a couple of classmates to be in the middle of a typical schoolyard dispute of which he wanted no part. He just wasn't up to dealing with that today.)

Chris took Genie for a walk once the guys returned home this afternoon before enjoying a snack and a video game break. At the appointed time, he stopped to finish his homework and then he went back into cyber world. He is up against one tough opponent in the game. He tried to call his game mentor, Uncle Jonathan, but his telephone line was busy. Dad thinks that Chris'll figure it out by himself though.

Chris and Dad didn't work on any Webelos stuff today although Chris studied something tonight. He is just one answer away from fulfilling the requirements for his Webelos badge. He worked very hard on memorizing it and seemed to have it by bedtime. We'll see if it sticks with him overnight.

Joke of the day -- Why is a ghost such a messy eater? Because he is always a goblin.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, October 19, 2003 8:55 PM CDT

Hi Everybuddy!

This morning's wake up call was fun since Genie awoke Chris by licking/tickling his feet. This wasn't a usual Sunday morning because it involved going to church earlier than usual and returning home for an early than usual lunch. The goal was to go with Uncle Jonathan to the beach before he returns to cold Ohio tomorrow morning.

After lunch, we all headed west to a state park called Fort DeSoto. Chris has been there before on several occasions, but it has been a while. We had been wanting to ride there along the beautiful bike/hiking trail as a family for quite some time; today was finally our opportunity to do so. While Uncle Jonathan headed out to the beach near the pier, Chris Mom, and Dad rode along the trail north and visited the fort and the old garrison area (it had been a coastal defense artillery post) and then up to North Beach. Chris did well but required several rest/water breaks. He got some sunshine; it was a beautiful day in the low eighties with plenty of sunshine.

After leaving the park, we drove along the Gulf Coast for a while, then stopped off to buy some new school shoes for Chris and then dinner for the rest of us. Once we were back home, Chris and Uncle Jonathan headed for the Playstation and for all practical purposes, checked out for the rest of the evening.

Medically, Chris did well and didn't have any problems but for needing to pace himself during the bike excursion. He didn't have any problems with nausea like yesterday.

Joke of the day -- What happens when a ghost gets lost in the fog? He is mist.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, October 18, 2003 9:08 PM CDT

Hi Everybuddy!

Genie was a happy dog today: she was able to awaken Chris with her rope toy. She dropped it right by his face just before giving him a big kiss. Once awake, Chris moved quickly to breakfast and then helped with the frenzy of last minute things needing to be done before most of his Cub Scout den showed up for their swim test (half of the boys are new to the den and didn't get to do the swim test last June).

Chris was a big help during the testing and was the designated "drowning victim." Today, there were several strong swimmers testing. The water temperature was indeed cool, but just about the same temperature as last June's testing day. Chris wore his new wetsuit though because he was in the water a little longer than the other boys. He did well but for a short time; he disappeared for a moment as he got a little sick to his stomach (he finished this cycle of chemo just yesterday). Dad didn't know about it until later, although Mom and another parent saw Chris make the run to the bathroom. As soon as it was over, Chris said that he felt well. For their required group water sport, the den members again played Chris' invention: the water game of Squidditch. Although it got off to a slow start, it turned out to be one of the best games of Squidditch that Dad has seen in the three years since Chris invented it and the boys really had a good time. All of the boys stayed for lunch and a special lesson on how to make their rockets for the next "Space Race." His pack is big into launching rockets (an aerospace engineer controls the rocket motors). Chris has already started working on his rocket.

Chris' friend, Greg, came over and also acted as a designated "drowning victim." After all the other boys left, he and Greg hung out and goofed off together for a little while, having a good time. Just before Greg left to spend some time with his family, Uncle Jonathan returned from his visit to the local science museum. He and Chris headed off to the "cyber world" for a while before Mom collected Uncle Jonathan and Chris to headed back to the museum for a visit to its special Titanic exhibit. It included a simulated iceberg for visitors to touch and imagine just how cold the North Atlantic water must have been at the time of its sinking. It helped to get an idea of how quickly hypothermia must have set in. There were many wonderfully preserved artifacts, too, including dishes (varying in quality depending on whether they were designed for 1st, 2nd or 3rd class passengers), clothing (remarkably well preserved), suitcases, a safe, and many other items. The exhibit also featured actors walking about in period costumes who represented different perspectives of those on board that ship: officers: boiler room worker, 1st and 3rd class passengers. Chris is getting older now and has a little more patience than he had in the past for stopping to look at things in detail. He's still young and goes through more quickly than an adult, but it's much better than just a few years ago. Of course it helped to have him listen to one of those radio devices that explain things to him as we moved through, too.

Upon their return home, Chris and Uncle Jonathan headed back off to the "cyber world" until dinnertime. Chris, who didn't eat well during lunch, got his wish for pizza. He ate just fine at dinnertime. He and Uncle Jonathan really get along quite well. Uncle Alex called too, so Chris talked to him for a little while, too.

Genie is really becoming more protective of Chris. Every time that we play a game like "bull pile" or something, she always moves to protect Chris from Mom or Dad or any other designated "bad guy." During a "dog pile" game however, it is every "dog" for themselves.

Joke of the day -- Why did the game warden arrest the ghost? He did not have a haunting license.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, October 17, 2003 10:35 PM CDT

Hi Everybuddy!

Genie was a disappointed dog this morning. She was ready to awaken Chris and was heading to his room (with her rope toy in her mouth) when Chris opened his bedroom door, already awake. He headed over to play a game that he had been playing with Uncle Jonathan last night.

Chris could not eat or drink anything this morning since it was required before his repeat CT scan. He did well by just playing the game and not thinking about it. (He hadn't eaten anything for about twelve hours at that time).

The guys' first stop was at the Tampa clinic where Chris' mediport was accessed and blood was drawn for a routine test and a full panel test. Today's blood results were: white blood cells remained at 2.2 (normal: 4.0 - 12.0), hemoglobin rose to 10.6 (normal: 11.5 - 14.5), platelets rose to 29 (normal: 150 - 450), while the ANC remained at 800 (normal: 1400 - 7400). The doctor officially called off the "G-CSF watch." Chris won't be getting any of that, at least not now. Dad also received the results of the urine test (HVA dropped to 9.8 (normal: 1.1 - 12), VMA was dropped to 4.2 (normal : 1.4 - 5.1), while the creatinine was 54 (normal: 2-183). As you may recall, Chris' urine test markers were at the high end of the normal range in July. They have dropped a little bit, but we know from the scans that there definitely are still tumors in the liver. In addition, Chris' full panel results at the beginning of the test cycle showed increase in ALT 90 (normal: 12 - 34) and AST 76 (normal: 22 - 44). Those factors probably rose as a result of the last cycle of Irinotecan. There were no additional reports concerning the most recent tests.

After receiving such information, Dad then drove across the bay to the hospital in St. Petersburg. True to their word, the radiology department moved Chris into the patient flow not too long after arrival for the re-scan of his chest and abdomen. He had fun with the CT technicians, as usual. They were having such a good time, that Dad wondered at one point whether they would ever get around to doing the scan. The scan went well and Chris didn't have any trouble with the in-stream contrast infusion.

While waiting to be taken to the scanner, the guys happened to see Christina's Mom and her sister walk by. They stopped in to say hi to Chris, who promised to come upstairs and visit to Christina. She has been in-patient for over 56 days now. Christina is still having some problems after her transplant, but she looked pretty good to Chris and Dad. She had her smile, but not her usual effervescence. She, Chris, and Ashley exchanged a few jokes; Chris later e-mailed his special collection of Halloween jokes. A lot of kids (ok, maybe a few adults too) are benefiting from those jokes, so thanks to all the contributors out there! Chris also had time to visit with one of his favorite nurses, Nurse Nancy. The two of them dueled with a plastic bone and a huge finger that says, "We're number one." The kid knows how to live dangerously.

Once home, Chris walked his dog before going off to the "cyber world" with Uncle Jonathan. Every once in a while, Dad asked Chris for some help since there is to be a second round of Webelos Aquanaut testing tomorrow at our house. Chris will reprise his role as a "drowning victim;" since the water temperature is getting cooler and he will be in the pool longer than perhaps the other boys, he will wear his new wet suit. Almost all of the members of his den will be here, so it will likely be a little crazy for a while tomorrow.

Chris finished his last dose of Temodal tonight, so he won't be on the "early dinner schedule" tomorrow; that will suit him just fine. Tonight he ate alone since he had to dine early (he wasn't all by himself -- he simply was the only one eating at that time). Mom came in after he finished, but then had to rush back out in order to pick up the last minute things we needed for tomorrow's scouting event. It was worth the wait to see her because she snuck out to get a new video game that has been on Chris' "save for" list for quite a while. He was a happy kid.

Joke of the day -- Where do most ghosts live? In North and South Scarolinas.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, October 16, 2003 9:22 PM CDT

Hi Everybuddy!

Chris had a "cool" day today. He was responsible for his class' "Friday snack," which was moved forward to today since there will be no school tomorrow. Everyone loved his brownies. His classmates remembered them from September (no, they were not exactly the same ones -- these were new ones made yesterday actually). It turned out that the guys had made so many for today that there were even a few left for the teachers (one even gave up her diet for one of Chris' brownies). In terms of schoolwork, the focus was on reading and a big math test. Still, Chris said that he had a good time at school.

The other "wickedly cool" (a new phrase for Chris) event was that Uncle Jonathan arrived for a visit shortly after the guys got home this afternoon. Mom brought him in from the airport just in time to join Chris and Dad to go shopping for a new wetsuit. Chris outgrew his old one, and he needs on to use in the pool in order to extend our swimming season. After finding a perfect fit for Chris, we took Uncle Jonathan out to dinner.

Dad also received an interesting call from radiology today: they want Chris to come back in for a "redo" of some of his CT scan. Apparently a portion of his liver was missed (did not show up) in last week's scan, but we're not so sure about that (the technicians went over last week's scan a couple of times then, so we're not sure what to make of this unusual development). Because there is no school tomorrow, Chris is free. Radiology can take him as soon as Dad can get Chris there. So, tomorrow morning Chris' first stop will be at the Tampa clinic for a blood test and to get his mediport accessed, then they'll cross the bay to do another CT scan. So much for his day off from school and goofing off with Uncle Jonathan . . .

Once we got home from dinner, Chris and Uncle Jonathan (a video game enthusiast) began battling one another in a video game. The competition was stiff and Chris held his own despite the game being new to him. Kids today are very good at conceptualizing strategy for the games and have the dexterity to make things happen with the controllers. It wasn't entirely a video game day for Chris. As soon as he and Dad returned from school, they went on a bike ride before Uncle Jonathan's arrival. It was a Chris-led excursion: nice but short.

Chris is still tolerating the Temodal with little apparent impact. Despite the excitement of having Uncle Jonathan here, we still kept Chris to the "early schedule." But for a few bruises, pale skin and thinning hair, Chris looks quite well. We can only hope that tomorrow's CT scan is just to complement last week's effort.

Joke of the day -- (Complements of Uncle Tom and Cousin Jane) -- What can't you give the headless horseman? A headache.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, October 15, 2003 9:32 PM CDT

Hi Everybuddy!

Genie the wonder dog got Chris going this morning with a big kiss to a slightly open mouth -- not exactly what Dad intended (nor Chris, for that matter). Chris' day really got started with a visit to the Tampa clinic and a routine blood test. Today's blood results were: white blood cells rose to 2.2 (normal: 4.0 - 12.0), hemoglobin rose to 10.5 (normal: 11.5 - 14.5), platelets rose to 26 (normal: 150 - 450), while the ANC rose to 800 (normal: 1400 - 7400). So much for counts dropping during a chemo cycle. Chris has a way of not doing what is expected. We're not complaining -- as long as its killing cancer cells. Dad called Chris' homebound teacher and pass on the word about the slight increase in blood strength.

Dad received a preliminary report from last week's MIBG scan. As the oncologist said, it indicated that the liver tumors looked to be about the same size to the radiologist as did the previous scan. There is some uncertainty about whether there could be something new going on in the left lower lobe of the liver. It could be either diffused disease or an "artifact" (artificial things that show up when pictures are joined together to make a bigger picture). Dad asked about what the 3D MIBG image showed; he was told that a "relook" is appropriate.

Chris' school has been "adopted" by the church located next door. The church permits parents to use its parking lots from drop-offs and pickups, and it permits the school to "marshal" on its property during "emergencies." The pastor also likes to sit in the doorway of his office and hand out candy to all the children who pass by on their way home. Chris never takes any candy but he has secretly dropped off large bags of candy to the church office "anonymously." The other day, the pastor pointed at Chris and smiled in a way so that Chris thought that he must be on to him being the "delivery man." Dad's not so sure, so the guys are going to keep it a secret.

Once home, Chris walked his dog and then took a break. At the appointed time, he started his homework. He did a good job on the reading but not so good on the writing. Since writing is a "Mom" thing, the two agreed to let Mom judge on the quality of his writing. He redid the writing assignment later.

The other things that the guys worked on were some Webelos requirements. After a huge bake-a-thon (Chris and Dad baked about 70 brownies for his class), Chris also finished the last requirement for his handyman's pin: he had to wash a car under adult supervision. Mom drove up while he was finishing the station wagon. Was she surprised and pleased! He surprised Mom later by washing her car, too. He did a really good job. He was freezing when he came back in the house though, wet from the carwash slop. He slipped right out of his clothes, dove under a blanket for a couple of minutes, then headed straight for the shower.

Joke of the day -- Why didn't the skeleton want to go to school? Because his heart wasn't in it.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, October 14, 2003 8:30 PM CDT

Hi Everybuddy!

It was an amazingly normal day for a chemo day and Chris having low blood counts. One certainly couldn't have been able to tell that by being with him today. One thing did come Dad's way via his teacher: the lunch lady has mentioned to the teacher that Chris often doesn't eat much of his lunch. We appreciate this kind of feedback and are a bit concerned. Chris says that he does eat much of his lunch, but often passes on things that taste poorly (hmm, a lot of room there . . .). He is pretty cognizant of what and how much he eats most of the time (a learned habit from his hospital days). He's holding his own on weight so far, so we'll just monitor the situation. He eats well around home, though.

Today's effort after school was getting his homework done. He had math which he did quickly and correctly. It was "Terrible Tuesday" (meaning very busy), which is often packed with both "God School" and Cub Scouts. He didn't have Cub Scouts today though. Still he likes to get things done. It was a good day since Chris and Greg were able to spend much of the afternoon together hanging out.

He spent some of the afternoon playing a video game and much of it with Dad working on Webelos requirements. He is just one step from earning his actual Webelos badge. He still has to learn the Outdoor Code. Chris also started working on his engineering pin. We are presenting those requirements to his fellow Cub Scouts in January, so we're figuring out just how to do that now, with Chris acting as the guinea pig.

Last night's dose of Temodal didn't have any apparent impact on Chris. We're getting into the "early schedule," beginning with Dad fixing Chris' dinner at about 5:30 p.m. Mom managed to get home tonight just as Chris finished eating his dinner. She joined him while he went back to playing video games; he explained his progress today.

Joke of the day -- What do goblins mail home while on vacation? A: Ghost-cards.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, October 13, 2003 9:28 PM CDT

Hi Everybuddy!

Genie the wonder dog had a new trick today (so she mustn't be an old dog): she brought in her tug-of-war rope into Chris' room to help wake him up. She dropped it right by his face and then sat on his back (Ugh). He awoke giggling. Chris' day really got started with a visit to the Tampa clinic, where blood was drawn for a routine blood test. Today's blood results were: white blood cells dropped to 2.0 (normal: 4.0 - 12.0), hemoglobin rose to 10.3 (normal: 11.5 - 14.5), platelets dropped to 25 (normal: 150 - 450), while the ANC dropped to 600 (normal: 1400 - 7400). He is getting close to the cutoff score for attending real school, so Dad keeps leaving updates for his homebound teacher. On Wednesday, another blood test will be drawn to see if he'll start getting more G-CSF shots. We're anticipating that will probably wait until Saturday since that doesn't usually start during a cycle of chemo. His pattern for dropping blood counts was disrupted after the last cycle.

There are still no test results from last week's scans, although the oncologist reviewed the films. She said that the MIBG scan looked to be about the same to her as did the previous scan, but she thought that the CT scan showed an improved status. Either way, there is still more work to do; the tumors are still there with little if any improvement despite two cycles of chemotherapy. Chris' urine and liver results are pretty much normal or slightly elevated. The doctor also performed a physical exam and said that Chris' liver felt well.

After school, Dad dropped off an idea for improving traffic flow in front of the school that Chris had helped to develop. It was a problem discussed in a committee meeting that Dad had attended. Chris has to sit in the room and do homework while the grown-ups talk, so he knew of the problem, too. The school personnel thought that it was cool. We'll see how it goes . . . .

Chris really wanted to see the new Jimmy Neutron movie tonight on TV, so he took a short break before starting into his homework. Once he was finished, he divided his time between doing Webelos things with Dad and playing a video game. He did well on working toward his citizenship pin for Webelos. He was able to see the Jimmy Neutron and he enjoyed it.

This week, Chris is taking Temodal, a chemo drug which must be administered on an "empty" stomach. This means that Dad fixes Chris' dinner at about 5:30 p.m. He gets Zofran to prevent nausea at around 7:00 p.m., and then gets his chemo at about 800 p.m. Chris wants to wait to eat dinner with Mom, but that can't happen this week. So far, he seems to be tolerating the Temodal pretty well, although Mom heard his stomach rumbling at bedtime tonight.

Chris spoke with Grandma and Grandpa today. We're still looking for Chris' missing Cub Scout jacket and wondered if maybe he hadn't left it at Grandma and Grandpa's house last winter. In any event, he had a good conversation.

Joke of the day -- What do ghosts say when something is really neat? Ghoul!

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, October 12, 2003 9:06 PM CDT

Hi Everybuddy!

Today's wake-up was more of a conventional method: Genie and Dad snuck into Chris' room while he was still sleeping and Genie sat on him. She has a remarkable sense of balance and he just thinks it is so funny. It may come in handier when it is cooler this winter. They snuggled on the bed while Dad made breakfast. He was back to S&S (aka sausage and saltines).

Chris' morning was spent in anticipation of linking up with his friend Greg, which occurred after church. Mom took those two to Chuck E. Cheese for pizza and fun. Dad had already told Chris that if it was too crowded, they have to go to an alternate location (his blood counts are still low). In fact, the place was very quiet for a Sunday, so they got to stay. Chris and Greg had their pizza, but armed with some tickets from a previous outing and with some additional tokens that Greg purchased, they earned enough tickets to buy an old style disco ball (yup, a disco ball, although this one is desktop sized).

Today was no different from the usual get together of these two. They had a friendly video game competition, played some pranks, and conducted spy missions. After a while Dad snuck up on them and pre-empted their missions. Interestingly, Genie would "go after" Dad in order to protect the boys. It was really funny at the time but we'll keep her reactions in mind if or when someone outside the family ever threatens Chris. In Genie's mind, Greg appears to be part of the family; she protected him too and she lets him climb all over her. After Greg left, it was time for a short shopping trip. Chris was his usually helpful self and then we headed over to a nearby place for dinner. Chris read a book while waiting for dinner.

Medically, Chris is doing well and didn't have any problems. This is good since tomorrow he is slated to start another cycle of chemo using the drug Temodal. Temodal has been found to cross the blood-brain barrier and has demonstrated some effectiveness against tumors. Hopefully Chris will be able to benefit from it.

� � Joke of the day -- What do goblins and ghosts drink when they are thirsty on Halloween? A: Ghoul aid.

� � � Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, October 11, 2003 9:36 PM CDT

Hi Everybuddy!

The covert sleep disruption team (SLT) assembled to accomplish their mission: awaken Chris. It moved stealthily (well, as stealthily as one may with a dog with dog tags jingling from her collar) towards the objective. Just as the SLT cleared the doorway into the kitchen, the little munchkin came through the other door and scared the bejeevers out of the dog: Chris was already awake. Since Genie looked disappointed (yes, it's true, she did), Chris went back to bed and pretended to be asleep. It worked and Genie the wonder dog went through her full morning awakening ritual. Dogs!

After Chris gave his dog a "dog pile," he headed out to the kitchen for a breakfast of Texas toast (complete with garlic). That pretty much grossed out Mom (it's too early for her to deal with garlic), but Chris likes it; besides isn't garlic supposed to help fight cancer -- and toast is a breakfast food.

Chris' morning was pretty mild since his friend Greg was involved in a fun run at his school this morning. Chris' mood and afternoon picked up when he learned that Greg could come over for most of the afternoon. Whenever Greg comes over, the boys get into everything (well, but for the pool today since Dad was doing some maintenance in the pool area). The boys went out to the clubhouse twice (once with Genie). They also went all the way to the back of the property (on the other side of the swamp) with their laser guns (we can only guess -- searching for alien dogs?). Genie helped with that expedition. They also played a lot of video games. Genie, Mom and Dad are fair game for the usual repertoire of their pranks and spy missions.

After Greg left, Chris mentioned that he wanted seafood for dinner (interestingly, we've read before that sometimes patients experience seafood cravings when blood counts are low -- coincidence??). While waiting for dinner, Chris finished answering his last first aid question for his Webelos pin there (fortunately, he did not try to resuscitate a lobster). Chris got so quiet and lethargic for a little while that we thought that he might be running a fever. Fortunately he did not, and it appeared that he had a passing wave of fatigue. At least it passed in less than 30 minutes, and he was ok after that.

Chris was a great help as we shopped at the supermarket this evening. One woman who was also shopping noticed his efforts. He's also pretty good at putting things away at home (we can even find them later).

Tonight Mom watched Chris play some of his video games (ok, she did take a nap during one . . .). Occasionally Dad broke Chris away from the game to do some Webelos tasks. He has almost completed all of the tasks for his Webelos badge.

Medically, Chris is doing well. He doesn't have any significant problems that he's mentioning and his bruising is, well, it's just going to happen with an alpha and beta dog in the house. But for the "down time" at dinner, Chris is doing fairly well and almost up to his usual energy level. He's still pretty pale looking, and his hair is brittle and thin on top.

� � Joke of the day -- (complements of Grandpa) A chicken crossing the road is poultry in motion.

� � � Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, October 10, 2003 9:41 PM CDT

Hi Everybuddy!

Chris was awakened by Genie the wonder dog. She looks forward to waking him up and "leads" Dad to his room during mornings. Lately, she has been laying in the bed with him until Dad calls Chris to breakfast. Chris' day really got started with a short visit to the Tampa clinic, where blood was drawn for a routine blood test. Today's blood results were: white blood cells dropped to 2.3 (normal: 4.0 - 12.0), hemoglobin rose to 10.0 (normal: 11.5 - 14.5), platelets dropped to 26 (normal: 150 - 450), while the ANC dropped to 900 (normal: 1400 - 7400). Surprisingly, there were no test results, so we'll go through the weekend hoping that the results may show some improvement after the most recent chemo. We just don't have anything official to report now though.

The clinic was hectic. Because there were still some issues to be resolved for next week's chemo, Dad took Chris to school and then returned to the clinic. Once there was a little lull, Dad picked up next week's chemo and all the appropriate instructions for its administration.

When Dad picked up Chris after school this afternoon, he got an assurance from Chris' teacher that he was still caught up with his classmates. The kid can hustle. He didn't have much to say about school today but for the fact that he and his "bodyguard" were working on a story about an animal that can kill snakes. Hmm. Dad told Chris that he learned that the snake they saw yesterday was an Eastern Ribbon snake.

Chris opted not to go bike riding and decided to just play video games. He messed around with the wonder dog though. When Mom arrived, he showed her his latest accomplishments in the game.

After dinner tonight, Chris used Mom as a "patient" for his first aid pin testing. It went fairly well
although he needs to retake one phase about handling burn victims. He has the first aid for first degree burns down pat (and we hope that's all he'll ever see). Still, he was trained what to do with the other burn categories so we agreed to a retest tomorrow evening.

Chris spoke with Greg tonight but was disappointed to learn that the two have conflicting schedules tomorrow. Maybe Sunday will present a better opportunity for some fun.

Joke of the day -- (complements from Uncle Tom and Cousin Jane) -- What kind of ghosts like to play cards? A pokergeist!

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, October 9, 2003 9:38 PM CDT

Hi Everybuddy!

Chris had a really nice day today. School was out by 11:45 a.m. since the teachers needed administrative time to prepare report cards. When Dad picked Chris up, he was surprised to find a huge box labeled for Chris. It contained the things that our neighbors had ordered during the school's fund drive, as well as salesmanship prizes for Chris. To everyone who helped raise money for his school, thanks!

Chris failed to notice the two bikes on the van's bike mount and was surprised when he and Dad ended up at a county park. He thought that they were going hiking (not his favorite sport) but was really happy to see the bikes. They rode for a little over four miles, during which they waited for one snake to slither across the trail. They also saw some turtles. Chris successfully tested his new bike bottle, which was filled with ice water.

Since Chris had only a snack as a "pseudo-lunch" for the half day of school, Dad next dragged him off to nearby -- Mel's Hot Dogs. Mel was happy to see Chris. Mel and Chris started talking about airplanes (Mel is a pilot, too). Chris got a big treat: he got to meet Mel's Mom! He presented her a happy face pin and said, "Thanks for teaching him how to cook." She thought that Chris was sweet. Who knows -- someday Chris might just end up working at Mel's.

Once the guys got home, they played with Genie (as always), Chris did his homework, and then they broke down the box of orders from the fund raiser. After a bit, the guys went out to the pool (the water is cooler already) and goofed off for about an hour. Chris then snuggled with Genie and watched TV. Chris was waiting for Mom to come home from work so he could play his role as "Deliveryman" at our neighbors' houses.

While Dad finished fixing dinner, Chris and Mom made their deliveries. Mom carried the stuff while Chris rode his bike to each house, what a deal. Chris' "good salesman" award was a portable karaoke machine. Dad set it up and Chris showed us just how much of a ham (showman) he really is. His dancing is better than his singing (no surprises there).

There are some new pictures posted on his webpage. They show him making a regular visit to the clinic, how the staff members access his mediport (he said that so many people have asked about it that they might as well see how it's done). Some young patients are sensitive about that, but not Chris.

Joke of the day -- When a clock is hungry it goes back four seconds.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, October 8, 2003 9:29 PM CDT

Hi Everybuddy!

Whew! Chris had his LONG MIBG scan today; it took almost two hours. He did well, too. Dad was able to see the technician's screen; the two spots on his liver were still obviously visible to Dad's eye again, but we definitely need a radiologist's interpretation in order to understand the meaning (i.e., size and intensity relative to the previous scan, etc.).

This day started with a short visit to the Tampa clinic, where blood for a routine blood test was drawn. Today's blood results were: white blood cells rose to 2.4 (normal: 4.0 - 12.0), hemoglobin dropped to 9.9 (normal: 11.5 - 14.5), platelet level was 31 (normal: 150 - 450), while the ANC rose to 1000 (normal: 1400 - 7400).

After today's clinic visit, the guys headed over to the school, where Chris was finally able to attend class (Monday was a holiday and Tuesday was tied up with medical scans and injections). Chris was only there for a few hours but he got a lot done. He took two reading comprehension tests and passed them both. That qualifies him for a reading award, which he'll receive later this month. He brought home a lot of homework when Dad picked him up later this morning.

While Chris was at school, Dad returned to the Tampa clinic and worked out the last issues before Chris starts the next cycle of chemo (this time it will be Temador) on Monday. While there, Dad received a pair of tickets for Chris to see a sneak preview of the film, "Good Boy." Then he went home, where he met with Chris' assigned Homebound teacher, in order to complete some paperwork and show her how Chris and her husband "did school." She visited the "classroom," treehouse, his bedroom, and the computer room so that she knows what assets are here for her use.

Afterwards, Dad went back to school to pick up Chris for his LONG MIBG scan. They stopped by Burger King for lunch enroute. Things at the hospital went like clockwork and Chris moved right into the scanner. It is a two part scan and takes nearly two hours. During one portion, he has to lay his arms above his head and not move (remember, he's strapped to what is essentially a board) for about twenty-five minutes. That is definitely not comfortable. He watched the movie "Ice Age" as a distraction. The data collection went well and the radiologist called later in the evening to say that Chris did not need to come back to the hospital tomorrow for the third part of the scanning process (optional elsewhere). He was happy to hear that he gets to go to school tomorrow -- it will be a half day schedule.

Once the guys got home, they played with Genie a bit and then Chris began his homework. He stopped when Mom arrived since he and Mom had to quickly drive over to the movie theater for the sneak preview. Chris liked it but thought that it was a little bit too cute. Mom liked it too, but had to agree that younger kids would probably like it better. Its moral about friendship and loyalty, while good traits to emphasize, was a little heavy-handed for Chris' age group. This sneak preview was sponsored by MGM studios, so there was a studio representative present to collect comments from the audience. Never one to pass up a possible opportunity, Chris had to provide a comment to the guy, who wrote it down in his notebook. Our thanks go to MGM tonight for allowing us a mid-week escape to the movies.

At home, Chris and Genie began their nightly competition between the "alpha dog" and the "beta dog." It is fun to watch but a bit "rough." They both love playing and Genie is really pretty gentle with him even as they wrestle (despite the bruises).

The guys spoke with Grandma and Grandpa this evening to let them know those pesky tumors were still visible on the scan. They also left the same message for Grannylin and Granddad.

Joke of the day -- Time flies like an arrow; fruit flies like a banana.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, October 7, 2003 9:42 PM CDT

Hi Everybuddy!

Chris had a peculiar start to today's testing: CT scan. The scan required him to be "NPO" (no food or drink). It also required him to drink three courses of contrast (about 12 oz each). The timing of these courses was such that Dad would have had to pull him out of class on several occasions this morning. As a result, Chris stayed home from school, even though the CT scan wasn't done until early afternoon. Chris enjoyed his morning and drank the distasteful contrast like the pro that he is.

Today's trip to the hospital went well (traffic is often a factor, but not so much today). The guys reported right to the nuclear medicine department to let the technician know that they had arrived. They then went down to the radiology waiting room and formally checked in. Not too much later, Chris was taken to the scanner, about thirty minutes earlier than scheduled. Surprisingly, the scan didn't take place right away because the new technician there wanted Chris to drink a full third dose of contrast. Chris has never had to do that before. Chris talked her out of it after he drank half of the glass; he also had given her a happy face pin when he met her and she was smitten with him. The scan, which was only of his chest and abdomen, went well. Chris did not get nauseous (as he frequently has in the past) because the technician very slowly infused the final dose of contrast during the middle of the scanning process.

Once finished there, the guys went back up to the nuclear medicine department to wait for Chris' injection of MIBG, a radioactive isotope. It arrived a little late but that's ok because Chris just loves talking to this technician. Once injected, the nurses down at the MRI scanner offered to de-access Chris' mediport. When he arrived there, it was like a groupie convention. Some of his favorite nurses, technicians, and doctors were there; everyone stopped to say hi to Chris. He gave every one of them a happy face pin. The pins are cool. Earlier, Chris gave a pin to an intern who had held the door of the elevator for Chris. The doctor told Chris, "Man, you made my day!" and left the floor later, smiling as he wore his new pin.

After the mediport was de-accessed, the guys went by Burger King, where a hungry Chris ate lunch. He ate in the car since the guys were trying to get to school before his teacher left. Too late; they missed her. He will be in class for a bit tomorrow though. By the time they left school, Chris was too late to attend "God School," so they went home and looked at some things for Cub Scouts until it was time for the den meeting. They had one massive "dog pile," which even Genie probably thought was memorable.

The Cub Scout meeting was nice; the kids are learning about citizenship. Our family will also host another Aquanaut testing party for the new Webelos in his den in a couple of weeks. Since none of us had a chance to have dinner before the meeting, we grabbed a light dinner at a nearby restaurant, where Tuesday is kid's night. Tonight it featured a very talented balloon artist. Although Chris doesn't usually care too much about balloons anymore, tonight caught his attention because this person made a motorcycle out of a balloon behind his back.

Joke of the day -- (from Grandma and Grandpa) -- A bicycle can't stand alone because it is two-tired.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, October 6, 2003 9:22 PM CDT

Hi Everybuddy!

Chris starts another medical testing cycle this week. He also had a day off from school, so it was a pleasant way to start his tests. The guys' first stop was to the Tampa clinic for a routine blood test, a HAMA blood draw and a draw for a full blood panel. Dad also dropped off a urine sample from Chris. Today's blood results were: white blood cells dropped to 2.2 (normal: 4.0 - 12.0), hemoglobin rose to 10.3 (normal: 11.5 - 14.5), platelet level was 40 (normal: 150 - 450), while the ANC dropped to 900 (normal: 1400 - 7400). Normally, an ANC below 1000 triggers the start of G-CSF shots, but because Chris is post-nadir from his last chemo cycle, the doctor wanted to wait until Wednesday's blood test to make the decision. Chris' body is covered with many bruises of varied colors and the medical team "harassed" Dad about them. Chris explained all of them attributing most to skirmishes with the "beta dog." Even if the inquiry had been serious, it is good that the medical folks keep on eye out for such things. Tomorrow, Chris begins his scans.

Afterward today's clinic visit, the guys stopped by the house to walk Genie, then went hunting for a CPR mouthpiece for Chris so that he could learn how to use it in order to earn his Webelos first aid pin. While they were out, the guys picked up more medicine for Chris, then had lunch out. Chris' meal came with a chocolate chip cookie that he gave to two young women (late twenties) just before the guys left the restaurant. They were really appreciative of the gesture (and the cookie).

Since Dad was finally feeling better when the guys got home, Chris initially helped Dad remove the heavy house battery from the camper so that it could be cleaned and maintained. He did a good job moving cables and shining the light at just the right places while Dad did the tough stuff. Once the battery was removed, Chris played video games for much of the afternoon, pausing for a few short bike rides and a snack.

During much of the afternoon, the guys covered the hard part of the first aid pin in about two hours; Chris did a remarkably good job retaining most of the information. He knows that he won't be signed off until he properly attends to "patient Mom" (she doesn't yet know what sort of "injuries" or "illness" it is from which she is supposed to suffer). He still doesn't like thinking about gushing blood.

Things got bumped all together this evening, so it was best to just go out to dinner. We had a really nice server and Chris gave her a happy face pin. There was a lot of joking going on throughout dinner and when it was time to go, she presented Chris with one of her pins (also a happy face, but with an Outback hat on it). Since we learned that she would receive another one if she was specifically complemented, we sought out the restaurant manager. Chris gave her the thumbs up.

When we got home, Chris let Genie out of her "club house" and the kitchen became an arena for a competition between the "alpha dog" and the "beta dog." When they go at it, it is good fun but can be somewhat rough! Genie is tough but in some ways gentle at the same time.

We spoke with Grandma and Grandpa this evening. They are fully recovered from the hurricane, but for an old tree that is now a lot less vertical than it had been. In other family news, we want to express our deepest sympathies for Aunt Pat, who lost her own dear Aunt yesterday.

Joke of the day -- Why don't dinosaurs go to Burger King? They can have it their way no matter where they eat!

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, October 5, 2003 9:08 PM CDT

Hi Everybuddy!

Chris began the day with his special breakfast called S&S: sausage and saltines. It is admittedly a weird breakfast combination, but it gets the job done of starting the day. Soon after breakfast, it was time to head off to church. After Mass, Chris and Mom spent part of the day completing chores, which included Chris getting his hair cut. He looks great, but he was worried about too much getting cut off. All that happened was evening up the thick hair in the back with the thinner hair on top. He looks much better, and hasn't said a thing about it since leaving the barber shop.

Once home, they gave Dad (who felt better today, but still not quite up to full snuff) wide berth and spent some of the afternoon playing video games. Chris tried unsuccessfully to teach Mom how to play Yu Gi Oh before she broke away to do some grocery shopping. Chris and Dad spent about an hour this afternoon working toward Chris' readyman pin (it is like a first aid merit badge) for Webelos. It's comprehensive. Chris developed a useful emergency call list, reminded Mom of our family fire evacuation plan and showed her the location of all of our fire extinguishers.

All of us got involved in one massive "dog pile." Genie was worn out after making repeated feints and flying jumps on the bed. Genie enjoys the wrestling and cheering.

Medically, Chris had a pretty good day. He tires easily though and is covered in bruises, but he didn't need any additional medications and seemed to be otherwise pretty near normal.

Joke of the day -- Why are perfume salespeople so smart? They have good scents.

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, October 4, 2003 9:20 PM CDT

Hi Everybuddy!

Chris awoke early this morning in order to attend a Cub Scout event at the local Museum of Science and Industry (MOSI) for the Webelos Scientist Badge. Actually, Chris had already earned this badge with Dad's help as part of the Lone Scout program (Chris is dual-enrolled), but he wanted to attend with his friends.

The MOSI instructor was boisterous and loud, but kept all of those boys in line for a fun couple of hours. It took place in one of MOSI's classrooms, and the boys were divided into teams, rotating around the room to various scientific experiment stations. Chris participated in about half of the event, but he tired and wanted a break. Because he had already earned the badge, and in light of his low hemoglobin count (less oxygenated blood), Mom escorted him to the museum's snack bar for a drink. He was fine afterwards, and rejoined his den just at the end of the class.

That was ok because they rode together in one vanload (with other parents following in their respective cars) for lunch at nearby Mel's Hot Dogs. Because he had had a rest period, Chris was energized enough to enjoy his friends' company at lunch -- and to eat 3 hot dogs. Later, he said that lunch was the best part of the day.

After all of the boys went their separate ways after lunch, Chris and Mom went to a nearby mall to hang out and give Dad a chance to continue his recuperation from whatever bug has been plaguing him over these past few days. They walked around the mall for a little while (slowly so as to get Chris to exercise a bit but not wear him out, given his somewhat reduced energy level now). Just as Chris was tiring, it was time for the next showing of "School of Rock" at the movie theater. Mom consented and they watched the film. It has a typical somewhat irreverent view of school and parental authority, it was otherwise relatively harmless. Chris enjoyed it. Mom is becoming increasingly aware that Chris is edging closer to the teenage years as his tastes are beginning to change.

They came back home and relaxed for a bit. Chris played video games for a little while, and they both got involved in a "dog pile" wrestling match with Genie. At one point though, Genie and Mom collided, and Mom hit the tile floor. Both are ok, although Mom's knee and hip are beginning to ache a bit. Age might be beginning to catch up to her . . .

A couple of days ago, Mom sent out a copy of an email written by another parent of a neuroblastoma patient, who has a dream of raising $10 million for neuroblastoma research in only 10 days. After only 3 days, over $15,000 has been reported in contributions to the Childrens Neuroblastoma Cancer Foundation (www.cncf-childcancer.org), and several neuroblastoma families have reported that they have been contacted by members of their respective local media. On behalf of Chris, I thank each of you for your support, including especially forwarding that email promptly to your friends. That is an excellent start, and it should start to exponentially grow, now that word is beginning to spread rapidly.

� �Joke of the day -- What did the fisherman say to the magician? Pick a cod, any cod.

�� Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, October 3, 2003 8:56 PM CDT

Hi Everybuddy!

� � � Chris was awakened by his wonder dog, "the beta dog," although she managed to push him off the bed later in the evening. Today's morning stuff did not include a G-CSF shot today since his ANC had been above 1500 fro two consecutive blood tests (indicative of a recovering immune system).

The guys made their first stop at the Tampa clinic for a routine blood test and platelet transfusion. The medical team had made a good call about Chris needing platelets; today's blood results were: white blood cells rose to 5.8 (normal: 4.0 - 12.0), hemoglobin dropped to 9.8 (normal: 11.5 - 14.5), platelets were 16 (normal: 150 - 450), while the ANC rose to 3600 (normal: 1400 - 7400). Chris was permitted to attend school today after his platelet transfusion. His body is covered with many bruises of varied colors, indicative of the low platelet situation. It seems that just looking at him cross-eyed can make the bruises pop out.

Afterwards, the guys stopped by McDonalds to get Chris a quick lunch before dropping him off at school. Chris was psyched to get to school as quickly as possible since he was the "guest teacher" today for Friday Fun Day. He was a little disappointed that his classmates were less than orderly with hardly anyone learning all of his tricks (well, except for the teacher -- she was good). Now he knows what the teachers have to endure when students don't pay close attention.

Once at home, Chris claimed that he was tired. Dad definitely was (he's not been feeling up to par for a couple of days). Chris quietly played video games most of the afternoon or read books. He took Genie for a walk occasionally and played with her. He was pretty much on his own until Mom got home.

Mom took Chris out to dinner and left Dad in peace. After dinner, Chris went on his first solo shopping mission with Mom, who remained in the car parked right in front of the store. He made his purchase in fine order. Dad wasn't so lucky when Mom and Chris returned home. His bed, where he was resting, became the battleground for a competition between the "alpha dog" and the "beta dog" (Chris' terms). For the record, Genie managed to knock Chris off the bed once and otherwise gave proper accounting of herself.

At bedtime, Chris turned off the lights in his room, flipped on the flashlight and held it pointing upright under his chin in order to give himself a spooky aura. Then he began to tell the tale being told in class of the "Skeleton Man." It sounded creepy enough, but Chris made it creepier by stopping halfway into the story. Mom thought it was a "cliffhanger" effect, but in reality it's because that's as far as they got into the story at school.

� �Joke of the day -- What kind of trains do ballerinas take? A tutu train.

�� Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, October 2, 2003 9:01 PM CDT

Hi Everybuddy!

� � � Chris went back to his special "S&S" breakfast: saltines and sausages. It's a little unusual for most taste buds in the morning, but it works for him. After all the morning stuff, including his G-CSF (painless today) shot, the guys then headed for the Tampa Clinic for a routine blood test. Today's blood results were: white blood cells dropped 5.2 (normal: 4.0 - 12.0), hemoglobin dropped to 10.2 (normal: 11.5 - 14.5), platelets were 22 (normal: 150 - 450), while the ANC rose to 3000 (normal: 1400 - 7400). Chris was permitted to attend school today. Because Chris' platelet level probably won't hold throughout the weekend, the doctor wants Chris back at the Tampa clinic for an early morning transfusion tomorrow.

The drop off at school, and school day itself, were uneventful. The school psychologist told Chris that the results of his recent cognitive function tests indicate that he is indeed a "normal kid." She has not yet spoken with Mom or Dad, so we don't know any more than that now. Chris hopes that tomorrow's platelet transfusion goes quickly since he supposed to teach his classmates how to do string tricks during the class' regular "Friday Fun Day."

Once at home, Chris claimed that he was tired. Because he said that he didn't have any homework, he played videogames for a while, sometimes with Mom watching (she was working on projects at home today). He took a short break to ride his bicycle around in the driveway for a few minutes, but other than that, he stayed in. In another short burst of energy, he wrestled with Genie in a "dog pile."

Later, when Mom went outside to retrieve the mail, she chatted with our neighbor. Her daughter works in a nearby restaurant, but tonight is her last night there before she heads out West for a big adventure. Both families wound up at that restaurant tonight in order to help give her a nice sendoff. That restaurant is next to a bookstore. Chris wanted a how-to book on skateboarding (yes, this is a boy who routinely has platelet counts in only double digits and who will be getting a transfusion tomorrow -- he intends to turn this dream of becoming a pro skateboarder into reality someday -- he's got to dream, right?). So, we picked that up since we were in the neighborhood. Dad went along, but he hasn't been feeling well all day. Hopefully he'll be back to full health tomorrow.

Uncle Brian called tonight from Iraq. He spoke to each of us tonight, but the connection wasn't the greatest. He sounded fine, just a little frustrated at the poor connection. Chris chatted with him for a couple of minutes and gave him a joke or two to keep his spirits up.

� �Joke of the day -- Why shouldn't you hang a funny picture on your wall? Because the plaster might crack up.

�� Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, October 1, 2003 9:07 PM CDT

Hi Everybuddy!

� � �Chris' day was wondrously normal; he even had fun at school. Genie stayed in bed with Chris this morning while Dad made Chris' breakfast. She didn't have any dog food at that moment though. Chris G-CSF shot went very well and didn't hurt a bit.

When Dad picked Chris up after school, he was in a very good mood even though he'd have to hang around for nearly another hour while Dad attended a meeting of the School Advisory Council. Chris did his homework right off as he discovered that two of his friends, the so-called "McDonald Girls" were there waiting for their parents, who are apparently also members of the council. Chris' first attempt at his homework showed Dad that he was in a rush to goof off with them. Although Chris went to sit with the girls, Dad called him back to reread the selection and recheck some of his homework. The girls were impressed that Chris was doing his homework, so they did theirs too (they are both in Chris' class). Chris finished it up correctly this time just as the meeting was starting. He went to the back of the library while the meeting was in progress and taught the girls some tricks with string ("cat's cradle," etc.). The girls are called the "McDonald Girls" because they give Chris a hard time every time he eats there for lunch rather than in the school cafeteria (usually due to medical appointments); they love McDonalds.

After arriving home, the guys took Genie for a walk and then had to leave to pick up some more medicine for Chris at the pharmacy. While out, they also went to another store for some new cases for the new cell phones. Chris window-shopped for things even though he knew he didn't have any money. He made plans for a future acquisition, having finished his comparative shopping.

Chris got some mail today: one was from honorary Aunt Cathy and one was from his friend Greg, who sent him a thank you note for the book that Chris gave to him (Greg also wanted to be Chris' pen-pal). Chris dropped everything and wrote Greg back. Hmm, maybe someday he might even write to other people?

When Mom got home, she was put right to work helping Dad diagnose a problem with the pool pump. Once that was completed, we realized that we were a little short on time, so we went to one of Chris' alternative pizza joints. After dinner and a little window shopping, Chris noticed that his hands were beginning to swell and get itchy. Once home, it only got worse, driving him crazy and spreading to the insteps of his feet. Benedryl (and maybe the thorough hand-washing that also followed) eventually brought some relief. Within an hour, the itchiness had stopped, but his right hand was still a little swollen. Who knows what caused that? Ironically, Dad was the one who was stung a few times by some bees today. Sympathy swelling?

Chris played "The Alpha Dog" with Genie today. Actually, the guys had a "dog pile" going on for about thirty minutes. The guys' goal was to keep Genie off the bed. She however, was tenacious. Despite the roughhousing, Genie is relatively gentle with Chris, even when he gets rambunctious.

Medically, Chris had a good day but for his swelling hands and itchy feet. His athlete's foot problem is much improved, and is mostly now just dry skin that needs to heal (Mom is continuing to apply tea tree oil until his feet look more normal in appearance.). One might think that he was a pro ball player or something. On the other hand, Chris also looks much more pale than he has been for months. He appeared very tired at bedtime, with red-rimmed eyes. No doubt the Benedryl contributed to that appearance though.

� � �Joke of the day -- Why was the sofa afraid of the chair? Because the chair was armed.

�� Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, September 30, 2003 9:36 PM CDT

Hi Everybuddy!

� � � Chris had a neat twist to the start of his day. When Genie awakened him, she licked his hands like they had sugar in them. While Dad was making Chris' breakfast, she took some of her dog food and carried it to Chris' bed, where she ate it on his bed. She truly had breakfast in bed. Frankly, we wish that she would just eat her dog food over her own bowl.

Toward the end of breakfast and after Mom left for work, Chris remembered something that he was supposed to give us last night: the brochure for his school pictures, which were to be taken -- today. That caused a little consternation and delay since the photographer wanted to be paid today. Chris still managed to get to school on time.

Again he had a lot of homework today. Today was also terrific (ok, maybe terrible, depending upon whether or not you control the family calendar) Tuesday. At the time, we thought that Chris had "God School" and Cub Scouts tonight (we later learned that there was no Cub Scouts). Chris quickly did his homework. Unfortunately, when Dad checked it, he was disappointed. The math homework was full of errors. After some prodding from Dad, Chris got his homework done correctly. After the first worksheet, things worked out a lot better; Chris carefully reviewed his work, which was met with success by Dad as e reviewed it.

Chris met his buddy, Greg, at "God School." Chris and Dad arrived there early so they played cards (they always have something to do to occupy time). After one game of War, a very pretty young girl asked if she could play, so Dad turned the game over to Chris and the girl. They had a great time until class started.

After arriving back home, Dad walked Genie while Chris rode his bike. He rode over to one of our neighbors' houses but couldn't lure anyone out to talk. He also looked for their cat (who sometimes seems to be more like a dog than a cat).

Meanwhile, Mom headed off for Chris' school at the end of her work day for a PTA presentation to the parents. It was by a child/family psychologist and was about positively motivating children through parents (and eventually the children themselves) acceptance of respective responsibility. The presentation was well done and liberally used parent-volunteers testing the psychologist with the negative "acting-out" behaviors frequently used by their own children. Chris and Dad were not able to attend because they had to pick up some back-ordered components for the new cell phones. They ate dinner at the mall where we bought the phones. At dinner, we had the privilege of meeting Jilly's new baby sister, Cadence. She was enamored by Chris and was very quiet as the grownups talked and Chris paid attention to her. She is absolutely beautiful.

Just before bed, Chris played a game that he called "The Alpha Dog." He was supposed to be the alpha dog, but it appeared that Genie often bested him. At one point, Genie was gently holding him by an ear. Mom and Chris gave each other big hugs, too. That, too, can (and did tonight) incite Genie to try and break them up (or maybe join in on it). It is fun to watch.

Chris finally finished a very long-term project -- an "invention" for a spy mission vest for all of his spy gear. He has it ready to send to the toy manufacturer for their inventor's competition coming up soon.

Medically, Chris had a good day. He still having stinging G-CSF shots (Dad is now trying a new lot of Emla Cream). He told Dad today that things (medically and in general) were going pretty well. Despite the medical setbacks, he's right.

� � � Joke of the day -- How can you get four suits for a dollar? Buy a deck of cards.

�� Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, September 29, 2003 9:22 PM CDT

Hi Everybuddy!

� � � Chris' day started out with a dog sitting on him (one of Genie's favorite ploys) and a wet nose in his ear. Chris went back to his usual breakfast of waffles and sausage. The guys then headed for the Tampa Clinic for a routine blood test. Today's blood results were: white blood cells rose to 5.8 (normal: 4.0 - 12.0), hemoglobin dropped to 10.8 (normal: 11.5 - 14.5), platelets dropped to 14 (normal: 150 - 450), while the ANC rose to 2800 (normal: 1400 - 7400). Chris was permitted to attend school today. Since he has to maintain an ANC above 1500 for two consecutive blood tests, he'll have to remain on G-CSF for a few more days. Dad was told to return Chris back to the clinic after school for a platelet transfusion.

The doctor examined Chris. Dad confirmed some additional tests for next week's testing cycle and that Temador would be the next chemo drug to which Chris will be exposed. He and the doctor also discussed the possibility of doing a CD-34 test (to determine if Chris' marrow is "mobilizing" and producing free floating stem cells). Since his blood counts are already on the way up, he'll have to wait until the next cycle of Irinotecan. If he is able to "mobilize," then there is a slim possibility of being able to harvest more marrow stem cells. The stems cells could be needed for future treatments. Having stem cells available that are uncontaminated by disease is often the "price of admission" in several emerging clinical trials. Thus, if Chris is able to produce such stem cells (statistically, he is not really expected to be able to do so given all of the chemotherapy that he has been exposed to over the years, but Chris has had an uncanny way of knocking statistics on their ears over these last few years -- it's worth a look to see what Chris can do), such an attempt at harvest would be very desirable.

The drop off at school, and school itself, were as Chris would say, "very uneventful." He had a lot of homework today, but some of that was to make up for some of the class work that he missed while he was at the clinic this morning. He was tired and hungry on the way to the clinic, so Dad stopped for a McDonalds kid meal.

The clinic was very busy this afternoon. Chris is a good "floater" and doesn't make a big deal if he has to wait for this or that. Some kids do. Consequently, the nurses usually make sure he is well taken care of. He and the doctor had a good session today. She normally leaves laughing. Today was no exception. The transfusion went well.

Once at home, Chris seemed a bit drained (or maybe he was just drowsy from the Benedryl). He opted out of bike riding and spent most of the afternoon playing a video game. He didn't even play with Genie to any great extent. He is well, but lacking in "Chris energy."

Medically, Chris had another pretty good day. He still says that his G-CSF shot stung a bit but he just tolerates it. His hemoglobin is a little low and maybe that's the explanation for the decline in the energy level. His appetite is good but a little below par. He lost some weight early in this cycle but has been holding at the new weight.

� � � Joke of the day -- What do you get when you cross rugby players with a cow? Team Jersey.

�� Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, September 28, 2003 8:55 PM CDT

Hi Everybuddy!

� � � Chris had a darn-near perfect kid's day. He went to a pro baseball game with his friend's family at Tropicana Field, where he watched the Tampa Bay Devil Rays win. The day even started off pretty well with Mom and Genie ganging up to awaken the sleeping giant (actually, he was already awake, playing quietly in bed with his GameBoy). He didn't have a chance. He again requested a special breakfast called S&S: sausage and saltines. It seems to have worked pretty well during his recent nausea-filled mornings.

Soon after breakfast, it was time to head off to church. After Mass, Greg's family took Chris with them for the ballgame. Mom and Dad spent much of the time that he gone to finish up the cellular phone shopping. Once Chris got back home, he was tired. So he played some video games first against Mom, then later with Mom just watching (it's no secret that Mom is terrible at video games).

Chris again acted like the Crocodile Hunter, and this time added a hysterically funny monologue about rescuing Genie, "an endangered species of the Mutt." He even "tagged" her by "wrestling" her collar back around her neck. Mom is thinking about filming the next time he does it. Genie still doesn't know what to think about it, but she enjoys the wrestling. �

Medically, Chris had a good day. His G-CSF shot stung a bit but he took it in stride. He didn't need any additional medications and seemed to be pretty near normal.

We tried to call Uncle Eric and sing him "Happy Birthday" but the lucky duck was out. We left our off-key singing on his answering machine though. Oh well. Happy Birthday Uncle Eric!

� � � Joke of the day -- What happens when you annoy a clock? It gets ticked off.

�� Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, September 27, 2003 9:42 PM CDT

Hi Everybuddy!

Chris would have probably described today as boring. But for some "dog piles" and "bull piles," much of the day was consumed by trying to do some comparative shopping for new cell phones and plan. Whew!

The day did have a few highlights. For some reason, Chris came out of his room acting like the Crocodile Hunter (Steve Irwin) but dressed in his red Cub Scout vest. He did a fine job mimicking Steve and was funny as he described his struggle to capture and rescue a dingo dog (yup, it was Genie). Dad thought that it was so good that he sent Chris back to our office, where Mom was, for a reenactment. She liked it too. Genie didn't know what to think about it, but she does enjoy a good wrestling match now and again.

He actually read one complete book today (about 100 pages) and put a good dent in his new book, "Chicken Soup for Preteens." He started reading it last night and seems to really like it. In fact, he sought out the book at the bookstore last night. Although Mom knew generally that this one of a series of "feel good" books, it made her a little nervous to think about what Chris' reaction would be to the stories of children with cancer. Most of those stories concern the friends of the cancer patient, who dies at some point. Mom has always been concerned about Chris confronting that issue while he is in active treatment. Chris seems to be handling it just fine, to her immense relief. She and Dad suspected that Chris knew generally that death can follow struggles with cancer, but he's never come out and discussed it with her. When he read one story about a young boy who did not return home after a bone marrow transplant, Chris just whispered, "oh," but he did not seem to dwell on it. (Hopefully he knows that lots of people do survive bone marrow transplants, since he himself -- as well as some of his friends -- are survivors.) Mom guesses that maybe it's good to have the issue out in the open, in case Chris ever wants to discuss it. After all, he's a mature 9 1/2 year old now.

In other new, Chris also was able to play video games for a while and ride his bike for a couple of blocks. It was obvious today that he tires more easily now, and his skin is paler. He's got bruises on lots of different parts of his body, but thankfully none of them seem to be exceptionally big ones (the big one on his hip is partly resolving, thanks to the platelet transfusion the other day). There are also a few scattered petechiae. Although Chris cannot maintain long periods of energetic play, he certainly can "bull pile" with the best of them.

He was very enthralled with the phone shopping (not)! Chris' only criteria is that our phones should have some video games on them. As practical as that may sound for a family destined to wait in hospital waiting rooms, the suggestion didn't score high with either Mom or Dad.

Chris tried to link up with Greg but there were scheduling conflicts today. Greg's Dad invited Chris to go with them to see a baseball game tomorrow so Chris started looking forward to that all afternoon.

Chris and Dad used Chris' new Wild Planet spy toy. They still think that it's cool. The eye display is not too different from what some helicopter pilots use. Chris is getting better at using his wrist keyboard and can quickly converse using it. Chris and Dad used the messaging device to coordinate a bull pile on Mom.

Joke of the day -- (complements of Uncle Tom and Cousin Jane) -- When is a black dog not a black dog? When it's a greyhound!

�� Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, September 26, 2003 9:54 PM CDT

Hi Everybuddy!

Today was a pretty normal day for Chris. He had no medical issues (well, he still has the athlete's foot problem, but it's much better -- most of it is now dry, peeling skin; there is only one open cracked area under one toe). Chris didn't have any cramps (there was one moderately painful set at bedtime, but he was too interested in his new "Chicken Soup for the PreTeen Soul" book to ask for any medication), nausea, or diarrhea. Chris got his shot and said that it wasn't too bad although he can feel it when it goes in. We're going to be trying the new lot of Emla cream tomorrow. He ate a decent (but not quite up to normal Chris-sized portions) at each meal, and even had a hot dog as a snack after Dad picked him up from school.

After school Dad saw the boy who announced to Dad last week that he was Chris' bodyguard. Today, when Dad asked Chris about him, he said that the boy did watch out for him. That boy had "guarded" Chris from some girls with whom Chris has a running joke with about eating at McDonalds. The "bodyguard" was "blocking" like in basketball; all of the kids had fun doing whatever it was that they were doing. He just told Chris one day that he was going to be his bodyguard. Chris doesn't even know why.

Among other news today was that Chris' "Guardian Family" (it's bigger than one angel) retrieved Chris' Webelo handbook after last night's pack meeting. Chris forgot and left it at the meeting hall. When Mom went back for it last night, it was gone. Chris issues a big thanks to Greg's family! As a thank-you, Chris bought Greg a book in a series for which he had been looking.

Another neat thing that Chris and Dad did today was go to the store, where Chris had to decide whether or not to spend his allowance. He discovered a cool new Wild Planet spy toy; it works great. It comes with a set of two message transmitter/receivers. The message is projected onto an eyepiece in front of one of the user's eyes. The message inputting device is strapped to an arm. He and Dad got it going and showed Mom haw to use it, too. Even Mom thought that it's a cool next-generation spy toy.

We learned that Chris' good friend, Allie, has started a new chemo protocol. �She didn't know she was sick enough to have to start again. As usual, she handled the news well and couldn't wait to go online to order a couple of cool wigs! �She will (hopefully) compete in another horse show this weekend before the nasty side effects set in. Now that's courage!

Joke of the day -- What did 0 say to 8? Nice belt.

�� Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, September 25, 2003 9:10 PM CDT

Hi Everybuddy!

Chris had another troubled morning and needed Imodium. He didn't each much breakfast again. Dad is getting pretty good at guessing Chris' weight at the clinic; it's dropping still. Before we went to the clinic, Chris and Dad called Grandpa and sang him "Happy Birthday."

Today's blood results were: white blood cells rose to 3.1 (normal: 4.0 - 12.0), hemoglobin remained at 10.9 (normal: 11.5 - 14.5), platelets were 31 (normal: 150 - 450), while the ANC dropped to 900 (normal: 1400 - 7400). Chris was permitted to attend school today, but the low numbers triggered the start of G-CSF shots again. After the clinic visit, Chris went to school, stayed there, and didn't have any problems.

During most of the time that Chris was at school, Dad and Mom worked on getting Chris' medications squared away. First, Dad picked up a refill of prescription drugs and stocked up on certain over-the-counter drugs so that the school nurse can administer Chris medicine on an "as needed" basis. This also required paperwork, which was finally completed after a few days' effort (whew). Just when that was winding down, Dad received a phone call: the doctor wanted Chris to start taking G-CSF again (his blood counts may fall even more over the weekend). Well, we didn't have any more of the stuff in stock around the house (even if we had, it would have been expired). Dad had previously discussed the possible need for it with our regular pharmacist, but after great effort by that pharmacist, the insurance complex care manager and Mom on relatively short notice, we had to find an alternative due to short supply in that pharmacy. Fortunately, our superb medical team at the Tampa Clinic came through to save the day. Chris got his shot and said that it wasn't too bad.

When Dad picked up Chris after school today, he was hungry. When he got home, Chris ate two grilled cheese sandwiches, then did his homework. After a bit, the pieces fell in place to get the G-CSF at our clinic's pharmacy so the guys (with Genie) went to pick it up. Once home, Chris changed into his Webelos uniform and went bike riding between our house and that of our neighbors.

Tonight was Chris' first Cub Scout pack meeting of the year. He and Greg hung out together and even helped collect money from selling pizza. The boys got their awards tonight (his den has been doing things over the summer). Between what Chris had done with his den and what he and Mom and Dad had done all summer, Chris received seven pins, which was quite an accomplishment. The guys had a good time.

Once home, Chris had another small dinner of a hot dog and watermelon (yup, he's southern). We then called Grandpa again and subjected him with another rendition of "Happy Birthday," this time with Mom's angelic (?) voice. He liked it though.

Joke of the day -- What did the grape say when the man stepped on it. Not much, just a little wine.

Happy Birthday Grandpa!

�� Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, September 24, 2003 9:14 PM CDT

Hi Everybuddy!

What seems to be a replay each morning, much like the repeat scenes in the movie, "Groundhog Day," Chris had another rough start. Having said that though, today he did not ask to remain home. He felt nauseated, had cramps and diarrhea (although this time it did not have a red tinge). Chris went to school, stayed, and didn't have any problems.

During the school day, Mom and Dad also ended up at school, although they went to meet with Chris' current principal and teacher as well as the homebound teacher and an administrator, should it be necessary for Chris to remain at home for a while. Both teachers are "cool." His homebound teacher, interestingly, is the wife of Chris' homebound teacher from last year. She already seems to know some things about Chris. The principal set the stage by announcing that both teachers and the "system" would do whatever was needed to accommodate Chris. We knew they were going to do so anyway; both are impressive. All went well at the meeting.

Dad went to the clinic today to get a medical order from the doctor so the school can administer medication on a contingency basis. He also did some more coordination for the upcoming scans. Chris will now also provide a urine collection and several blood draws, including blood for a HAMA test.

When Dad picked up him after school, Chris was "starving" and asked for an adult size McDonalds chicken meal. He wolfed it down and announced that his appetite was back (good, that makes up for the virtually nonexistent breakfasts over the past couple of days). The guys then went to the scout headquarters and picked up a pin that Chris had earned: the athlete pin.

Once home, the guys started working on the last tasks for his scientist pin (they repeated some of the experiments for Mom later) . They made some fog, a "diver's bell," and "levitated some water (basically demonstrations of air and water pressure). He had a good time. They then worked on some of the remaining tasks for his Webelos badge. He has some more work to do for that though.

Chris called Grandma and Grandpa to see if they were still living like the pioneers but Grandma told him that they now (finally) had electricity. He was happy to hear that and even asked Grandma is she was still a "dirty dog" (their water heater is electric). He is ever the diplomat.

Mom arrived shortly after the "science lab." Chris had just finished watching "The Simpsons" and was eager to watch the Bob Hope/Bing Crosby movie "Road to Rio." He likes the two guys as they goof off on the screen.

Tonight, everyone "ganged up" on Genie, who loved the attention. She didn't know where to run and even one time ran into her "clubhouse" (her cage). Chris thought that she was pretty well behaved, especially after reading about "Honorary Aunt" Cathy's dog eating twelve packs of gum.

Medically, Chris still has some morning "issues." He had some cramps and diarrhea again. He did not have any problems throughout school but did have some right after dinner. It is a trend. He didn't take any Zofran today but did take two Imodium ADs.

Joke of the day -- What is big and white and lives on Mars? A Martian-mallow!

�� Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, September 23, 2003 9:14 PM CDT

Hi Everybuddy!

Except for a rough start, today was a good day for Chris. He started on a breakfast of cinnamon apples and sausage again but midway through, he felt nauseous, felt moderately painful cramps and had diarrhea, twice. It was a bit exciting since the water had a red tinge. Mom remembered all the cherry koolaid Chris drank yesterday, which is a plausible explanation for the red coloring. He wanted to stay home and go back to bed this morning, but having received all the medicine that he could have for a while, Dad asked Chris to go to school and see if he could tolerate it today. Unlike the last few days, he went, stayed, and didn't have any problems. We were quite proud of him for giving it a try.

Dad dropped Chris off at school via "pony express" since they were running late due to Chris' morning problems. Chris told Dad that that the real problems began when he got to school -- a substitute teacher. He was hard-core and made them do lesson "packets" all day. Chris got the hang of it quickly and did all of those for the day as well as his homework. He was bushed when Dad picked him up after school.

He wasn't too tired to go shopping for the new book in the "Series of Unfortunate Events." It debuted today, as did the new Disney movie "Holes" (which Chris likes). He got the latter for getting beyond the rough morning and sticking it out in school.

This afternoon, Chris linked up with his friend Greg at "God School." One of the activities was an improvised skit. Chris apparently ad-libbed pieces of "Annie" at appropriate times for the skit. We're not sure how it fit in but everyone thought it was funny.

We got some information from one of the New York oncologist. They still want HAMA blood samples from Chris, so maybe there is a possibility of him being able to continue with the antibody treatments in the not too distant future. We're still looking for their evaluation of last test cycle's samples.

Chris helped Dad make some goulash today (well, more like coached him). At any rate, it turned out well but he has a lot of work before he can earn a cooking merit badge.

Chris called Grandma and Grandpa to see if they were still living the "quiet life." Yup, they are still without power. Chris was surprised to learn that even Grandma might have read a book or two from the "Series of Unfortunate Events."

Medically, Chris had some problems in the morning. He had some painful cramps and diarrhea during "morning stuff." Interestingly, he didn't have any problems through school and the evening right up until bedtime. He then had some more stomach cramps. Today, he has taken an Imodium AD (for cramping) and Zofran doses for nausea.

Joke of the day -- Where was King Solomon's temple? On his forehead!

Thank you for your prayers and for remembering Chris, Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Morgan, Michael, Christina, Daniel and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Click here to go back to the main page.

Click here to view older journal entries.

----End of History----