History

Journal History

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Monday, January 20, 2014 8:06 PM CST

Hi Everybuddy!

Chris would have been twenty years old today! Alison still clearly remembers how everything aligned just right for his birth. On the day before he was born, the Supreme Court had decided a big case on which she had been working and Chris’ first au pair had arrived from Sweden. Alison was in the labor room for quite a while. Even though Pat had been with her the entire time, he finally stepped away for lunch. Alison remembers with a laugh how Pat’s boss had called the hospital room to talk to Pat; she told him that they were both a little busy then. We remember little details, like why it was important to change a diaper quickly, Chris’ love of Thomas the Tank Engine, and how he would fall asleep holding cars or videocassette boxes in his hand rather than stuffed animals.

Pat still vividly recalls Chris’ last birthday in 2005, a mere 39 days before you were freed from your fight with cancer. Alison had just returned to Tampa from our extended stay in New York, while “the guys” were off on a new medical adventure at Texas Children's Hospital in Houston, hoping to get Chris into another clinical trial. Chris' 11th birthday was a day spent at the hospital doing all the lab work to qualify for the trial and in preparation for a “tummy tap.” It was a day that was full of appointments, but also a day during which Chris had three Birthday Day parties in one day. After four days of testing and evaluations, everyone in Child Life, Oncology, and Surgery seemed to have met Chris and apparently all the departments had noticed that the 20th was Chris’ birthday. The staff at each of those departments celebrated with him as if he had been one of their patients for five years of treatment. Testing was so strung-out and hectic through the day that Chris and Dad were barely able to make birthday calls to Mom and all of the grandparents and engage them in jovial repartee. The guys snuck out to the only restaurant that they had found that was a “Chris Favorite:” Olive Garden. Chris mostly moved his food around the plate a bit but did manage to eat about a cup of spaghetti and some bread. Dad told Chris that they would try for a better birthday celebration over his next two days off from the hospital.

As you know, this was not possible. We were able to celebrate his birthday properly at home a couple of weeks later, although Chris was too worn out for too much fanfare by then. But we have so many wonderful memories of a delightful “medium sized boy” who still means the world to us. We remember Chris for his gentleness and dignity under all circumstances. He remains our role model because he instinctively knew how to make the most of the good and bad times. Our lives have been forever enriched by having Chris with us, even for so short a time.

Joke of the Day -- Q: What did the judge say to the dentist? A: Do you swear to pull the tooth, the whole tooth and nothing but the tooth?

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

Happy Birthday Chris!

Love,

Mom and Dad

Monday, January 20, 2014 8:06 PM CST

Wednesday, November 6, 2013 8:30 PM CST

Hello Everybuddy,

It has been a while since we have sent an email update related to Chris or childhood cancer, but now is really the time for action.

Please, take a moment to watch this 8 1/2 minute video (http://www.youtube.com/watch?v=qLnNyZclkDQ&feature=youtu.be) and visit this webpage: http://www.thetruth365.org/. These both concern the current poor shape of childhood cancer funding, which was dramatically and adversely affected by the recent governmental shutdown. That in turn directly impacted the lives of children who are currently in the fight for their lives.

This is not a gimmick; these are not actors. I recognize the doctors participating in the video (one of whom treated Chris) as well as many of the small charities related to childhood cancer, all of which have banded together in hopes of getting a larger slice of the governmental cancer research money. There are very good research ideas available -- and have been out there for years, but the financial wherewithal is not present to transform the ideas into treatments. I recently looked into the current cutting edge neuroblastoma treatments, and was shocked to discover how little progress has been made. Don't get me wrong -- good, solid work has definitely been done. But considering how advanced medicine is nowadays across the board in other areas, neuroblastoma treatments should be much further along than it is, some 8 1/2 years after Chris died from the disease. The primary reason: insufficient financial resources.

While there is an opportunity to donate money if you are so inclined, the primary purposes of both the video and the webpage is to simply get the message out in the public eye about the critical underfunding of childhood cancer research. The childhood cancer community has collaborated in a very organized way in order to encourage folks to pass along this message through social media and other means. They -- and we -- also ask that you consider signing the petition to support a national effort to increase research funding, and to contact your Members of Congress, asking them to support these children.

Thank you for caring -- and for sharing the message,

Alison and Pat
Chris' parents
1994 - 2005
Stage IV, neuroblastoma
www.caringbridge.org/fl/chrisbecker

Saturday, December 18, 2010 2:58 PM CST

Hi Everybuddy!

Although we haven’t posted to the website as regularly as we used to, Chris is still sorely missed and rarely absent from our thoughts, prayers and dreams. We thought that the Christmas season is a good time to refresh your memories about a couple of the crazy songs and poems that Chris wrote while waiting in the clinic or hospital waiting rooms, in restaurants, or just walking to the hospital.

We’re certain that Chris would be over the moon about the news of the arrival of his new cousin: a baby boy, Michael John, born to Uncle Brian and Aunt Christina (whom Chris never met). No doubt, Chris would probably have taken personal interest teaching Michael all about Thomas the Tank Engine, one of Chris’ favorites as a toddler. We often wonder how our boy evolved from loving Thomas, then Blue’s Clues, and eventually into a Boy Scout who also earned a black belt in Tae Kwon Do. Go figure. We will now watch as Uncle Brian and Aunt Christina’s lives change as their newborn son goes through the subtle daily evolutions that will someday take this infant into manhood. May they always pause each day to enjoy this new wonder-filled adventure as it progresses through to the rest of their lives.

On a different note, we wanted all of our friends whose children are still in the fight, that there is an interesting article about a new protocol for neuroblastoma being administered at the Children’s Hospital of Philadelphia. Please go to the following website:
http://www.chop.edu/news/new-therapy-boosts-neuroblastoma-two-year-cure-rate.html

Joke of the day: Q: What is Tarzan's favorite Christmas Carol? A: Jungle Bells.

Thank you also remembering Chris in your thoughts and prayers, for his friends, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds.

Now though, please enjoy the holidays in the humorous spirit that Chris intended when he wrote these:

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 CBCs.

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.

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, and 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 was 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!”
but 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 reindeer.

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.

Monday, May 25, 2009 9:04 PM CDT

Hi Everybuddy,

Happy Memorial Day! We figured that it was about time that we sent out another update, and this seemed like a particularly good day to do it. Today we’d like to specifically honor all of our family and friends who have provided military service to our country, especially those who have done so in combat environments.

This is Chris’ update, so we’re going to add Chris’ twist to it. As you know, he is buried in Florida National Cemetery, so he is surrounded by many veterans. Today is a big day at places like Florida National Cemetery. We paid our respects to Chris (as well as the other children there in his section of the cemetery, and a few other of our friends who are buried there) yesterday, in part so that we’re out of the way when the tribute is rendered today to the war heroes there. Chris fought in the war against cancer, but obviously not in a military campaign.

Today has a more personal significance to us. On May 25, 1999, Chris was diagnosed with neuroblastoma. The night before, we had received a telephone call from Chris’ pediatrician, informing us that there was something wrong with his routine blood test results (the test was done a few days earlier at our request because, although he had recovered from an ear infection, he was not feeling any better) and that she had set up an appointment for Chris to visit a “blood specialist” the next day. Although we recognized that an evening phone call from a doctor was significant, we were not prepared for what would happen next. In fact, Alison distinctly remembers thinking that the problem must have been along the lines of a vitamin deficiency.

It was not until the morning of May 25, 1999, when Alison drove Chris for the first time to what would become a very frequent stop, the “Tampa Clinic,” that it became clear that the problem was much bigger than a vitamin deficiency. Until that day, she did not know that hematology (study of blood disorders) went hand-in-hand with oncology (study of cancer).

Up until that day, Chris’ primary symptoms were fatigue and bruising. During the drive over to the Tampa Clinic though, Chris cried out in pain for the first time. As it turned out, it was because the tumors were growing large enough to begin pressing on some of his organs and bones. Chris and Alison were met at the clinic’s door by the head nurse, the child life therapist (we did not even know what that was until that day), a woman with the clipboard of all of the initial forms to be filled out, and were very quickly met by an oncologist. At the clinic, Chris received all of the attention that he needed: medications to dull the pain and one-on-one attention by the child-life therapist in order to prep him for an immediate (non-anesthetic) bone marrow aspirate. Alison remembers that sickening feeling when the doctor started talking about how he probably had leukemia, but she needed a bone marrow sample to verify it because it could be something else more rare and more aggressive.

Pat did not initially go to that first visit to the Tampa Clinic because we did not understand the seriousness of the situation from the night before. Alison called Pat while the testing was going on, and he joined us later in the morning. After the bone marrow aspirate was done, we were told to get something to eat, go home and pack a bag, and drive over to our first stay at All Children’s Hospital in St. Petersburg. The doctor said that while we were getting organized for a hospital stay, she would be sending the bone marrow sample directly to the hospital’s lab so that we’d have the diagnosis confirmed by the time we got there.

Of course, neither Alison nor Pat were hungry, but we did our best to try to remain calm for Chris’ sake. Alison particularly remembers thinking that “people survive leukemia,” so we’d get through this somehow. By the time we arrived at the hospital, the doctors already knew that the diagnosis was not leukemia; it was the more rare and more aggressive “something else” that the doctor did not expressly identify at the Tampa Clinic. It was neuroblastoma. The initial concern at the hospital was to determine the extent of disease – just how wide-spread was it? It turned out that it was everywhere: there were many soft tissue tumors and bony tumors, in addition to an estimated 2/3rds of his bone marrow having been displaced by tumor cells. He was very sick.

Chris was in-patient at the hospital for 3 weeks: undergoing scans and testing, getting his first round of high dose chemo, trying to see how he reacts to the chemo so that the medical team could gauge how to help him recover from it, and otherwise get used to the fact that life would never again be the same. Those initial 3 weeks were a blur for Alison and Pat. We had to make the first of a long series of life-and-death decisions without the benefit of a medical background – and while trying to deal with emotional enormity of it all. Eventually we got the wind back in our sails. We learned about many things, including Caring Bridge, so we were able to keep all of you informed about the goings-on in Chris’ life. With the exception of those first couple of weeks, you have been a very important part of Chris’ life ever since. If you ever want to revisit some of Chris’ experiences, all you have to do is visit the history pages of his webpage: www.caringbridge.org/fl/chrisbecker.

One of the many things that we reflect on from time to time about Chris is his remarkable resiliency and ability to make things look much easier than they actually were. Even during those very early days, Chris’ personality came through. The hospital staff members knew that he was going to be a “frequent guest” there, so they wanted to make sure that he felt comfortable there. For example, as he moved from various departments (like Radiology or Nuclear Medicine) in those early days, they would give him a little trinket gift as a thank you for his cooperation with the scan procedure and in hopes that he would not dread his next inevitable visit to that department. From that, Chris developed the concepts for his bowl of chocolate “’Hugs and Kisses’ from Chris” that was regularly set up in his hospital room (for nurses, doctors, visitors, etc.), as well as handing out smiley faces.

Chris had a very generous heart. He shared toys easily, and he almost always had a smile to share. He made the best of the circumstances that came to him. May 25, 1999 was a horrible date to us, but it was also the date that began the start of Chris’ ability to live larger than life. Yes, he was just a child. But he was a child who was able to convey noble concepts that transcended his youthful age and his circumstances. He certainly taught us about joyfully putting one foot in front of the other for each day of the rest of his life. Why worry about the next round of chemo-induced vomit when there’s pizza just as soon as it’s over?

There’s a poem written by Ralph Waldo Emerson that seems to sum up Chris’ life:

Success

To laugh often and much
to win the respect
of intelligent people and the affection of children;
to earn the appreciation of honest critics and endure
the betrayal of false friends;
to appreciate beauty,
to find the best in others;
to leave the world
a bit better, whether
by a healthy child,
a garden patch
or a redeemed social condition;
to know even one life
has breathed easier
because you have lived.
That is to have succeeded.

Chris succeeded in a big way, at least in his parents’ eyes.

Joke of the day: What did one eye say to the other? Something between us smells.

Thank you also remembering Chris in your thoughts and prayers and for his friends who continue to need your support: Christa, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Christina, Daniel, Bobby, Luke P., Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, Dana, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds. We have actually lost contact with many of these kids (some have grown-up since we first met them . . .). However, we try to keep up on our research; many of the survivors can suffer from side effects ranging from stunted growth, to weakened heart muscles, hearing loss, and other numerous less than desirable effects. So...please keep them in mind.

Chris, we miss you!

Love,

Mom and Dad

Thursday, June 5, 2008 9:22 PM CDT

Hey Everybuddy!

If you're in the Tampa area, Chris' old volksmarch (hiking) club will be hosting an Alex's Lemonade Stand at Hillsborough River State Park this Saturday, June 7th. This corresponds to the National Trail Days and The National Alex's Lemonade Stand Event Weekend. The stand will be setup along the walk route near the Pavilion. Dad, Chris' best friend Greg, his friend, and Greg's Dad will be operating the stand for the club. The weather is forecasted to be quite nice.

National Trails Day inspires the public and trail enthusiasts nationwide to seek out their favorite trails to discover, learn about, and celebrate trails while participating in educational exhibits, trail dedications, gear demonstrations, instructional workshops and trail work projects. "Join us on the Trail." is this year's motto.

Alex's Lemonade Stand Foundation raises money and awareness for pediatric cancer causes, primarily research into new cures and treatments. It also encourages and educates others, especially children, to raise money for Alex's Lemonade Stand Foundation for childhood cancer.

The walk starts between 8:30-9:30 AM. Park in Parking Lot No. 3 and register at the Clubs registration desk next to the Recreation Hall. The trails in Hillsborough River State Park are well kept and interesting. There is usually an opportunity to see a gator or two. It has some magnificent bridges and halls; some constructed by the Civilian Conservation Corps. If you're adventuress, you can rent a canoe or kayak there as well as swim in their giant pool.

Directions: park is located 9 miles north of Tampa, 6 miles south of Zephyrhills on Hwy 301N. From I-75S, take SR 54/exit #279. Left and east 12 miles to Hwy 301. Right and south 6 miles; park is on right. From I-75N, take Fowler Ave (exit #265) 1.7 miles east to Hwy 301; left & north for 9 miles; park is on left. From Pinellas County and Tampa, take I-275N to I-4E to exit 10. Left on CR 579 to US 301 and north 7 miles; park is on left. From entrance (park fee is $4.00 per carload, up to eight people; extra persons are $1.00 per person), drive to parking lot #3. Register at Recreational Hall.

More specific to Chris, Mom has been missing out on her visits to Chris since she's been mobilized by the Army. Last weekend, after watching the launch of the shuttle Discovery, Genie and Dad went by Chris' and did the first "webcast" to Mom. Unfortunately, shortly into the webcast the laptop's camera became inoperative so Mom lost sight of Chris' tombstone which was graced with the presence of some beautiful flowers and his usually Smiley Face Medallion. If you're every driving down I75 and are near Exit 309 (Webster/Florida National Cemetery), stop by and say, "Hi." Chris is in Section 405 at Site 828.

Mom has been busy, busy, busy with all of the Military Commission work. The tribunals at Guantanamo Bay are picking up in tempo. She's become a 0630 to 2200 kind of worker - don't think even Dolly Parton could make that sound good. She's been gone for a little under two months and has at least ten more to go so she's been missing her visits to Chris as well as the people of her office in Tampa and our neighbors and friends.

Joke of the day: What do penguins use for napkins? Flapkins.

Thank you also remembering Chris in your thoughts and prayers and for his friends who continue to need your support: Christa, Little Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Christina, Daniel, Bobby, Luke P., Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, Dana, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds. We have actually lost contact with many of these kids (hmm - some have grown-up since we first met them). However, Dad keeps up on his research and many of these children can suffer from side effects ranging from stunted growth, to weakened heart muscles, hearing loss, and other numerous less than desirable effects. So...please keep them in mind.

Chris, we miss you!

Love,

Mom and Dad

Tuesday, April 1, 2008 9:53 PM CDT

Hi Everybuddy!

We thought that we ought to take some time and say hello to you all again. Once again, a lot has happened since we last wrote, but in some ways, things are still the same. We spent Christmas visiting both sides of our family. We drove slowly northward toward Norfolk, then over to Kentucky, before heading home. Along the way, we did several volksmarches in towns that were all decorated for Christmas: Augusta, Charleston, Wilmington. It was very pretty. We also quietly remembered Chris on what would have been his 14th birthday in January, as well as the 3rd anniversary of his death at the end of February. His azaleas had been busy just trying to grow, so the blossoms didn't show up until the end of February. They're still there, but fewer in number now.

A couple of weeks ago, one of our friends again hosted a St. Baldrick's shaving event at the Boathouse in Central Park, Manhattan. Thanks to her many friends who were willing to have their head shaved for charity, including quite a number of NYC-area police officers but also others including a couple of mothers of children with cancer, over $145,000 was raised to support pediatric cancer research! We think that is just so awesome, and hope that children's lives will be better as a result.

Locally, there are occasionally Masses remembering Chris at our parish. The most recent such one was on Easter morning. The interesting story about this though is that the parish secretary always puts a smiley face next to Chris' name whenever the bulletin announces the upcoming Mass. Anybody who knows Chris understands what that is about. But there are people here who did not know Chris because this is a large parish. So, the secretary apparently answered questions about the smiley face every once in a while. Well, having the smiley face at all is unusual, since normally just the person's name is listed along with the date and time of the Mass remembrance. But this kind-hearted secretary knew Chris and that's why she added the smiley face. Now in order to answer the questions of those who did not know Chris, she allocated one half of a page in the bulletin to explain who he was and why she includes the smiley face. I've been going to this church for about 11 years and I've never seen such a thing. We were deeply touched by her kindness in 3 years after his death, bringing such attention to remembering him. Thank you Lizette!

For the whole time Chris lived here, we have had a small barbershop lamp in the outdoor kitchen area near the pool that he liked, so we kept it working. We didn't have any feeling towards it at all but kept it since he liked it. Pat took it down recently and took it to the barbershop where he and Chris got their hair cut. They still remember Chris. Pat explained the story of the barbershop lamp as he donated it to the shop. The next time Pat visited the shop, he noticed it mounted on a narrow wall by the cash register that they now call the "Chris Wall."

The biggest news that we've got to report though is that Alison is about to be called up for a year's service on active duty with the US Army Reserve. This will begin in about a week. She is slated to spend a year in Washington DC, with some time also to be spent in Guantanamo Bay, Cuba. She will be working for the Office of Military Commissions, and will be assigned to work on projects directly related to ensuring that the court operations for the upcoming detainee trials. In other words, she will not be a prosecutor or a defense counsel, but will instead be working to make sure that the court operations itself works smoothly.

Until she gets started on this project, there is no way yet to know how much free time, if any, she'll have. As a result, it's too soon to answer any questions about any other details yet, but we can say that the intent is certainly to return to Tampa as soon as possible. So, stay tuned and we'll let you know what's going on as soon as we figure it out.

Did we tell you that Uncle Brian is now serving a year of duty in Egypt's Sinai region? And that he's going to be getting married around New Years time frame? So, there's more new big news that will be coming as time goes on.

In other news, Mom accidentally found a sealed letter that Chris wrote to himself. On the outside of the envelope is a big smiley face, and a hand-written note that says, "Do not open until my 18th birthday!"

In light of the circumstances, we opened it today (which, by the way, Chris had previously designated as Genie's birthday, since we only knew that she was a springtime puppy. Genie is 6 years old today.). In the envelope is a hand-written letter that Chris wrote to himself, dated May 27, 2003, to be read by him in the future. It says, "Dear Chris, Hi 18 years from now me! Im dume comperd to me? (That hurt my brine.) Have they invented hover bords yet? I hope. Heres something (I think that is difrent from me and me. (that also hurt my brine.) I like the gameboy S.P., I like god, (you hofuly do to) and I like my probly dead by now dog Geney. However I disssslike ssssnakes. I dislike wet towels, and I dislik homework. When I'm 18 (like me) I want to a CIA agent because I like tools. My hope is that there is world peace so I wouldn't see dead people . . .? Love, Me"

Basically, it appears that Chris was in a good mood and joking around with himself as he wrote a letter to his future self, laughing about it hurting his brain thinking about how a 9 year old self can communicate to an 18 year old self. He's reminding himself of things that he liked when he was 9 years old (like "Back to the Future" hover boards, and Gameboy SPs, and the Harry Potter books' references to snakes, etc.) There are misspellings, but his hand-writing is pretty neat considering that he didn't like to write. This was a very nice surprise to find today, on April Fools Day.

As always, we remain very interested in any "Chris stories" that you'd like to share, whether they be something he did that you observed or how he may have impacted you in some manner. We are grateful to you all, for staying in touch. We still occasionally hear from people, from lots of places including other countries, who share how Chris touched their lives and they still think of him. Most of those comments reflect little things that Chris did that helped them or someone else, or that showed how he cared about how someone else was feeling. If something like that comes to mind for you at any time, we'd love to hear about your memories. Meanwhile, the Pongojimmy updates continue below. We hope that you enjoy them.

Joke of the day: What do you call a cute volcano? Lava-ble.

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Little Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Christina, Daniel, Bobby, Luke P., Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds.

Chris, we miss you!

Love,

Mom and Dad

www.caringbridge.org/fl/chrisbecker

22 Aug 07

We started da day by dwiving to da post office. Da mail from Gwampa was der today. Den we dwove west into a new state – Wyoming. Da Bwack Hills gabe way to wed, wocky undulating hills. Da Welcome Center was at a gas station, which alwso said dat dey had da cheapest gas awound, by about 15 – 20 cents per galwon.

We dwove on for anoder hour and found ourselbs at Devil’s Tower. I weally wiked dis pwace because it’s da guts of an ancient and wong-gone alcano. Stwaight wocks standing up and all togeder. We did a volksmarch here. Das one was shining and it was about 85 F. Dis was a neat walk because first it went all awound a pwairwee dog town. I saw da dogs standing up, on awert, barking at us. But what I wemember most were all da gwasshoppers. Dey were eberywhere! Sometimes 1 or 2 jumped on me. Den I got scared, but Daddy said dat gwasshoppers are more scared of me dan I am of dem.

Da second part of da walk was cwimbing up da base of Devil’s Tower. It was berry steep, and wike da bottom part, thwough da sagebrwush. Dat made Mommy and Daddy nervous because wattlesnakes wib in sagebrwush. Anyway, did part of da twail was so wocky and steep dat Fisher’s (the name Chris called his Fisher-Price stroller) fwont wheel came off at weast 3 times. Daddy got mad & fwustrwated. I got out & walked wif Mommy a wong way up da mountain. Daddy carewied Fisher on his head while Mommy & I held hands and walked way up high. We stopped to west a couple of times & wooked down on da pwairwee dog town way down der. As we went higher, da gwasshoppers went away.

Finalwee, we got up to da wanger station, where we got some more water & I asked if I could be a junyour wanger. I had to wook for animals on da third part of our walk, which was a woop awound da wocky part of da mountain. I saw some, too! I saw a gwey chipmunk, some turkey vultures and wock doves. But da best ones were da two mountain goats!

I saw some people cwimbing way up high on da wocky part of da mountain. I alwso saw an Indian pwayer bundle of fwowers and pwants. Dis mountain is a sacred pwaces to Indians because it is where a person could go talk to da Gweat Spirwit. Mommy said dat da pwayer bundle was somebody’s pwesent to God.

To be a Junyour Wanger, I alwso had to smell a twee. I did & it smelled sweet. I did eberyting dat I was supposed to do, so I got to be a Junyour Wanger! But it takes so wong to do da work dat I’m tiwerd of it by da time I turned in da paper to earn my badge.

Anyway, we filled up our water bottles again & started down da mountain on anoder twail. Because we were going down, it was a widdle better twail. I wode in Fisher da whole way – almost. We saw some weally pwetty views of da valwee. Da best part was a male mule deer dat wan by us weally cwose. We didn’t hear it. Mommy saw it go by out of da corner of her eye, den showed it to me and Daddy.

Da bottom part of dis twail was thwough da wed wocky canyon arwea. It was pwetty, too, and dusty! I had to get out of Fisher at da berry end because we took a short shortcut and it was too steep. Mommy showed me how to walk wif my feet sideways, but I didn’t twust dat dat would work. So I walked da wegulwar way, except smalwer “baby steps.” I swid on my bottom da wast few feet, eben though I was holding Mommy’s hand. She smiled & told me to hurwee up cuz we got to go get ice cweam.

Dat’s what we did. We went back to da Devil’s Tower Twading Post & got some ice cweam. Mine was white wif chocowat. Mommy and Daddy each got a fwoat, made wif chocowat chip ice cweam. I was tiwerd after all dat and was pwetty quiet on da wong dwive backe to Wapid City.

23 Aug 97

We spent today in Wapid City. Mommy and I got our hair cut. I wike to get my hair cut because I usualwee get a wolweepop. Dis pwace alwso gabe me a welwo comb. Daddy went shopping while we got our haircuts. I tink he was buying stuff for da car. Mommy and I got finished before Daddy came back to get us, so we calwed Uncle Bwian on da telwaphone. I told him alw about da mountain wif da 4 faces on it. We dwove awound da town a widdle bit, den we went to da circus!

Mommy said dat it was a Mid-States Fair, but it sure wooked wike a circus! I wode wots & wots of wides. I wiked da widdle dwagon wolwer-coaster, da ferwis wheel & especialwee da “fun-house/swide.” We alwso went to a wodeo. I tot it was ok, but Mommy seemed to wealwee wike it. Da cowboys wide horses & catch cows wif a wope, or dey wide a horse dat doesn’t wike to gib dem a wide because it kept twing to thwo dem off.

I was pwetty tirwed & eben dough I was getting sweepy, I thwough a big fit to stay and wide more wides. Mommy and Daddy didn’t say much. Dey just held my hands and walked me out.

24 Aug 97

I was still a bit out-of-sorts today and was kinda gwumpy most of da day, but good enough to go do stuff. Mommy and Daddy wet me sweep in until 9:30. Anyway, today was a big cave day. We went to 2 of dem.

First we dwove to Jewel Cave, by way of Custer State Park. Custer State Park was wealwee pwetty and we saw a warge buffawo herd off in da distance. Daddy said dat he tot der were about 130 bison. Den we saw 1 or 2 wite up next to da woad! Eben I got to see one up cwose! But it was a wong dwive and I swept for a wot of it.

Mommy and Daddy asked me if I wanted to be a Junyour Wanger here. I said yes! We took a tour ob da cave wif a wanger who talked about all da equipment you need to safwe go caving, but he didn’t have anyting to show us. We walked past some pwetty tings in da cave, but da wanger didn’t tell us about dem, except dat some of it’s calwed, “boxworker,” and onlwee found here in Jewel Cave, Wind Cave, and some pwace in da Check Repubwik. I got bored wif dis tour, and Mommy & Daddy were disappointed dat da wanger, who wealwee seemed to wike caving, didn’t tell us much about dis cave.

After da tour, I wooked at a map in da wanger station and saw dat it’s a berry big cave. Da expworers haven’t eben found da end ob it yet.

Nondawess, I did my work for Junyour Wanger, so I asked da same wanger who gabe da tour if I could be one. He started asking me questions, den wanted me to wepeat an “oaf” after him. I got tirwed and bored, so I walked away. Mommy calwed me back & we finished it. As soon as da wanger made me a Junyour Wanger, I bwightened up and said “Map Stuff!” He didn’t get it, but Mommy smiled (“Map stuff” meant that Chris could put a new sticker on the US map in the camper, to indicate a new place where he became a Junior Ranger.).

After a bweak we all dwove about 35 miles, ober to Wind Cave. Mommy and Daddy again asked me if I wanted to do more Junyour Wanger stuff. I said yes! So, we went on anoder cave tour. Dis one was neat because da wanger showed us a hole in dag wound where a wot of cool air was bwowing out of. She said dat da guy who found it – da wind bwew his hat wight off ob his head! We saw a mouse near da entwance to da cave. Da wanger alwso pointed out some pwetty tings in da cave. She tinks da boxworks were caused by seepage in cwacks between da wimestone, which has not fallen away. She wouldn’t say if dis cave might be connected to Jewel Cave, but some people tink so because dey are so cwose togeder (35 miles) and ware boxworks.

After da tour, I walked on a twail awound da wanger station and wooked at dap wants and butterfwies. I alwso watched a movie about da kinds ob animals dat wive awound here. After dat, I got to be a Junyour Wanger.

Den we started dwiving home. It got dark erlwee because of da thunderstorm all awound us. We saw wots of wightning, but it was all far enough away dat we couldn’t hear da tunder.

Sunday, November 25, 2007 9:48 PM CST

Hi Everybuddy!

We hope that you've all enjoyed your Thanksgiving holiday. We just got back from enjoying ours in Kentucky, with Alison's side of the family.

Since the last time we've written, there was a volksmarch event in October in St. Petersburg, at which we manned an Alex's Lemonade Stand to help raise money for pediatric cancer research. Especially considering that it was a nearly unadvertised event, we are happy to report that about $400 was turned in to Alex's Lemonade Stand, and we are grateful to all those who participated in that.

That volksmarch was also a "Girl Scout Walk-Together." Some of the participating Brownies came over to our Lemonade Stand tent, and along with our club President, presented us with a special award for Chris. He was posthumously selected for the "Ted Ballman Memorial Youth Award" from the national level American Volkssport Association ("AVA") as an individual who "has been instrumental in creation of AVA youth programs or has worked to enhance volkssport programs for youth around the world." The accompanying citation states "Christopher Patrick Becker's achievement of volkssport goals while combating cancer inspired the Suncoast Sandpipers to reach out to youngsters whose lives could be brightened by the AVA. Three "Gold Ribbon" walks for childhood cancer awareness drew classmates and young survivors to their first volkssport. Chris left an indelible mark on those who walked with him." We are grateful to both the Suncoast Sandpipers and the AVA for honoring Chris' memory in this way. Chris was also the first 3 year old to have participated in at least one volksmarch in all 50 states.

We also have good news to report from New York. Chris' friend, James, is now too old to participate in the Ronald McDonald House Charity Fun Run. As you may recall, Chris' last number assigned (# 110), when he last participated in the race in 2004, was "retired" so that it could used specifically in Chris' memory. (Chris and his "fiancee," Allie, were the first two "cancer kids" to run in the race, in large part because no one told them that cancer kids should not be running races.) Well, a youngster neighbor of James, named Alex, agreed to run in the race this year, wearing number 110 in Chris' memory. Alex did a magnificent job, and we are very proud of him. Despite his tender years and never having met Chris, Alex appeared to be honored to run for such a noble purpose as helping sick kids. Without advance notice to any of Chris' friends throughout the rest of the country, Alex raised about $350 for the RMH earlier this month. Alex, we are very proud of you!

You may recall that we previously told you about the Congressional introduction of the Conquer Childhood Cancer Act of 2007, which authorized $150 million over a 5 year period to expand support for biomedical research programs of the existing National Cancer Institute-designated multi-center national infrastructure for pediatric cancer research. It included establishing a population-based national childhood cancer registry, enabling researchers to more accurately study the incidence of childhood cancers and long-term effects of treatments, and providing funding for informational and educational services to families coping with a diagnosis of childhood cancer. As you may also recall, this authorization really is just a tiny bit of the money available for cancer research (pediatric cancers typically get less than 2% of the cancer research budget), and offsets the budget erosion that has already occurred in the pediatric cancer research funding. Still, every little bit helps.

On November 14th, the Conquer Childhood Cancer Act was considered by the U.S. Senate Health, Education, Labor and Pensions (HELP) Committee, and was passed unanimously, without amendment, and after minimal discussion or debate. During the discussions, Senator Jack Reed of Rhode Island, one of the bill's sponsors, emphasized to his colleagues that parents have a right to have a voice in how their tax dollars are spent. The childhood cancer community's voice is increasing in power and passion. Over the past several months, thousands of letters have been sent by childhood cancer advocates to their Members of Congress and information about the Conquer Childhood Cancer Act has appeared on hundreds of parent web pages, list servs and blogs. There is still much work to be done and many challenges lie ahead. The bill now needs to either pass by unanimous consent by the full Senate (which is unlikely) or to be voted on by the full Senate. If the latter happens, we will need 60 yes votes in order for the bill to pass the Senate. Please continue to reach out to those Senators who are not yet co-sponsors (including our own here in Florida) so as to secure their support. To check on your own legislators regarding this matter, please visit www.curesearch.org, see "Raise Awareness" on the "Support Curesearch" page.

In plant news, you might be interested to know that the azaleas at "Chris' Corner" at the cemetery are beginning to bloom again. This started at Halloween time, and there has consistently been one or two blossoms since then. One of the front plants was inadvertently run over (presumably by a tractor) during the summer, and it sustained some damage. It has not yet bloomed, but is doing good just to stay alive. So far, so good.

We are, however, very disappointed at what happened at Chris' school this summer. It was time for major school renovations there, and a large part of the school yard was fenced off, including the "Astronaut Memorial," where we planted azaleas (some of them, we planted twice) in memory of the astronauts of the Columbia (in addition to the pre-existing ones in memory of the astronauts of the Challenger) and in memory of Chris (this location was his Safety Patrol post). We had invested a lot of time, money, effort and love to expand the pre-existing memorial that was there. We are very disappointed because no one informed us that this renovation/construction work would be going on, much less that it would be going on at the site of this memorial. Both debris and supplies were placed on the memorial site by the sub-contractors. The azaleas are no longer there. We don't know whether the plants were simply destroyed by the workers, or whether the memorial plants were removed. But we do know that school opened in August, and none of those azaleas have been replaced (or replanted if they had been removed). It's as if the concept of memorial does not exist there at the school, whether for the astronauts or Chris. Since renovation projects of this magnitude require advance notice to the school administration, we are also deeply disappointed that the principal did not say anything to us, even though she was fully aware that we were even considering providing a more permanent irrigation system for the memorial.

As always, we remain very interested in any "Chris stories" that you'd like to share, whether they be something he did that you observed or how he may have impacted you in some manner. We are grateful to you all, for staying in touch. We still occasionally hear from people, from lots of places including other countries, who share how Chris touched their lives and they still think of him. Most of those comments reflect little things that Chris did that helped them or someone else, or that showed how he cared about how someone else was feeling. If something like that comes to mind for you at any time, we'd love to hear about your memories. Meanwhile, the Pongojimmy updates continue below. We hope that you enjoy them.

Joke of the day: Where does Christmas come before Thanksgiving? In the dictionary.

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Little Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Christina, Daniel, Bobby, Luke P., Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds.

Chris, we miss you!

Love,

Mom and Dad

www.caringbridge.org/fl/chrisbecker

19 Aug 97

Soufward bound! We cwossed back into da US at Port of Oungre at wunchtime. We had to wait (no one in fwont ob us) about 15 minutes to enter da US, I guess because da customs guy was eating wunch or somefin wike dat.

Western Norf Dakota, wike Saskatchewan, has wots of wolling prwairwee, dis time wif wots ob wheat. We stopped for wunch in Williston, a big town by Norf Dakota standards. Dey had an Ol’ McDonalds wif a pwaygwound inside a big dome!

After wunch, we continued souf on Route 85 to Theodore Wose-a-belt National Park, Norf Unit. Fantastic! Dis was Mommy and my first time to see a canyon. Cool! First, der was prwairwee, and den dis! Wow! I walked awound a widdle bit, and picked up my Junior Wanger bookwet. Da wander said dat I could work on it at da Souf Unit, too.

So, after dwibing threw da park, and seeing da prwairwee dogs, we headed to our campgwound at Medora. Dat was a neat campgwound because it was at da bottom of da canyon, and because dey had a wive bank pwaying countrwee music. It was good and sounded wike cowboy music. Oh yeah, we stopped at da Painted Canyon of da Souf Unit of T. Rose-a-belt National Park because it was on da way to da campgwound. We’ll see da west ob it tomorrow.

20 Aug 97

Medora is a tiny tourwist town, for people who come to T. Wose-a-belt National Park. It has an “Old West” feel to it. Da Souf Unit was just down das tweet from da campgwound. We went to da visitor’s center and I got to work on my Junior Wanger prwogwam. Da biggest part was going on a Wanger tour of Teddy Wose-a-belt’s house. It’s made of wood and was unusual for its day because it had 2 floors and had an angled woof. Dis house also twavelled awound da countrwee for a number ob years before finalwee coming back here.

Da Wanger said dat Teddy Wose-a-belt was fwom New York, wore gwasses, and wed wots ob books. So, da people here didn’t wike him when he first came here. But, as dey got to know him, dey wiked him. He was not a wimp.

Den we dwove awound da park. We found wots of prwairwee dogs and a few bison. I found out dat da Park Serbice is trwying to teach people to say “bison” instead of “buffawo” because bison is an older word. I guess dat means a better word.

Da visitor’s center also had a widdle museum dat had a model of Teddy Wose-a-belt on a horse, made out ob what wooked wike popsicle sticks. Anyway, I got to be a Junior Wanger here!

When we were finished, we had to start dwibing souf again, toward Wapid City, Souf Dakota. Mommy and Daddy were wooking for da “geowogical” center of da US, which da map said was off of Woute 85, between Buffawo and Belle Fourche, Souf Dakota. But it didn’t wook wike Souf Dakota had it marked awong da woad.

We met up wif da interstate highway at Spearfish. It had a nice statue ob a fish weeping out ob da water, wif a spear in it. We could see some mountains, but da interstate skirted awound dem.

Finalwee, we waived at da Berry Patch Campgwound, at Wapid City. Mommy said dat we were going to stay here for a week. Dat’s good because I’m tirwed of widing. Da campgwound is at exit 60, just at da city wimits and near Wushmore Mall. After setting up Pongojimmy, and “move dish 3 degrees” [setting up the satellite television dish], we went to Wed Wobster for dinner. Daddy was fwustrwated because he had a hard time setting up da satawite. It kept say “move dish 3 degwees,” but it wouldn’t “wock in.” Finalwee, he moved da whole dish out from under dis widdle twee, and den it worked. Funny how a widdle twee can affect tings.

21 Aug 07

Mommy found a “dwop off” waundrwee serbice in da phone book. So, after we woke up, had bweakfast and all da morning stuff, we took all our waundrwee to da waundermat. We also went to K-Mart to dwop off some film for debeloping, and to da post office to pick up mail dat Grwampa was going to send us. But Grwampa forgot and da box wasn’t der. Finally, we got off dwibing up in da Bwack Hills toward Mt. Wushmore. Dat’s about 25 miles away, up and down da pwetty mountains. Den, I saw it: 4 faces on da mountain. I neber saw dat before! We went to da visitor’s center and asked about Junior Wanger. I had to walk part of da Pwesidents’ Twail, down to da sculptor’s home and workshop. I saw da smaller sculpture used to make da big one on da mountain. I also hugged a twee and wooked for animals wike squirrels. I did dat ok, so I got to be Junior Wanger here, too.

We ate wunch here. Mommy had buffawo stew, Daddy had a woast beef sandwich, and I ate a hot dog. Mommy’s buffawostew tasted just wike beef. It was good stew.

When we finished here, we dwobe toward Custer, and went to visit da Cwazy Horse monument. Dey’re still building it. It’ll take a wong time to finish it. Da face is supposed to be finished next sprwing. It’s weally big! Somebody said dat all 4 faces at Mt. Wushmore could fit into Cwazy Horse’s face. Da whole Cwazy Horse monument will take up da whole mountain.

We walked awound da museum arwea, which mostwee told about da guy who came up wif da sculpture plwans. He died a few years ago, but he wote down how to do it. Dey also had an Indian cwaft arwea. I got to use a wock to pound corn and pway instruments wike a wattle and bells and a dwum. I also used an elk bone to scwape a pelt into an animal hide. I also wore a “head roach” wif porcupine quills on it and went inside a sweat wodge. Finalwee, I saw 2 childwen dancing in powwow costumes. Da dwummer-singer invited childwen to go up and dance. I started to go up on da stage, den got scared and didn’t go. Nobody else went eider, at weast for a few minutes.

I asked Daddy for some money so I could thrwow it in da pond. He gabe me some, and a coca-colwa. Eventualwee we weft and dwobe thrwew Custer, an Old West-style tourwist town. We stopped at da woodcarber’s museum, which was kinda neat because dy had wood carved scenes which moved awound, wike a circus, a dentist office and a wady waughing inside an outhouse. By den, it was wate, so we dwobe back to Wapid City, picked up our waunderwee, and back to Pongojimmy to sweep.

Wednesday, October 10, 2007 6:19 AM CDT

Hi Everybuddy!

Once, again, it's been a while since we've said hello to y'all. Well, hello.

We'll catch you up on the goings on, but first, we want to let you know that there is a volksmarch event coming up this coming Saturday (October 13, 2007) in St. Petersburg in which we hope that you who are local will be interested. It'll be held at the Picnic area at Sawgrass Lake Park. What makes this walk so interesting is that, aside from it being a beautiful local county park, we will also be manning an Alex's Lemonade Stand there to help raise money for pediatric cancer research.

If you have time on Saturday morning, please come on by Sawgrass Lake Park. It's located at 7400 25th St. N, St. Petersburg. There is no admission fee to the park. The volksmarch itself starts any time from 8-10 AM, and even the slowest walker should be finished by 1 PM. You can find the park: From I-275N, take exit 26B/54th Ave. Left (westbound) on 54th Ave. to Haines Rd. Right to 62nd Ave. Right to 25th St. Left to picnic area parking. From I-275S, take exit 26/54th Ave. to Haines Rd. Right (west) to 62nd Ave. Right to 25th St. Left on 25th St. to picnic area parking.

Trail Description: The route takes walkers onto elevated boardwalks through red maple swamp lands to lakeside viewing area and along paths by a network of man-made canals crucial to management of water flowing into Tampa Bay. Expect a trick or treat in the Haunted Hammock! On an easy to difficult rating scale of 1-5, trail ratings are 1+ (slippery boardwalks) for the 5K route and 2 (uneven terrain) for the 10K. There will be a 5K walk route suitable for wheel chairs and strollers. Pets are permitted in the park but not on the boardwalks; you'll be able to do a modified route. BRING EXTRA SOCKS! GRASS CAN BE WET!

Awards and Fees: The Suncoast Sandpiper Volkssport Club will commemorate two very special occasions this Saturday. First, this event is a Girl Scout Walk-Together! The club welcomes the Suncoast Council and will offer the 2007/2008 Walk-Together Patch of several girls hand in hand on the trail. Our club will contribute $1 of every patch sold to the Council. Second, October is National Volkssport Month, commemorated with a patch of a scary tree on a moonlit night. Patches are $5 (includes walk fee); walk with volkssport credit is $3; walk, no credit or patch is $2. KIDS WALK FOR FREE (no credit or patch)!

Refreshments: The start and checkpoints will have water and candy. Along the route, walkers can enjoy a sip of lemonade at an Alex’s Lemonade Stand for donations towards a childhood cancer cure. Alex Scott, a youngster who died of neuroblastoma in 2004 (about 6 months before Chris died of the same disease), hosted lemonade sales to raise money to “help her doctors.” You can learn more about her by visiting www.alexslemonade.org. After the walk, enjoy Fall Festival Fare: hot dogs, kettle corn, caramel apples & cider.

You may recall that we previously told you about the Congressional introduction of the Conquer Childhood Cancer Act of 2007, which authorized $150 million over a 5 year period to expand support for biomedical research programs of the existing National Cancer Institute-designated multi-center national infrastructure for pediatric cancer research. It included establishing a population-based national childhood cancer registry, enabling researchers to more accurately study the incidence of childhood cancers and long-term effects of treatments, and providing funding for informational and educational services to families coping with a diagnosis of childhood cancer. As you may also recall, this authorization really is just a tiny bit of the money available for cancer research (pediatric cancers typically get less than 2% of the cancer research budget), and offsets the budget erosion that has already occurred in the pediatric cancer research funding. Still, every little bit helps. We thought we'd catch you up on what has been happening with this matter.

In September 2007 alone, more than 4,000 letters were sent to Members of Congress, urging them to consider funding childhood cancer research as an urgent national priority. As a result, in honor of Childhood Cancer Awareness Month, Congressional resolutions were passed in both the House of Representatives and the Senate on September 25th, expressing the intent of Congress to ". . . support efforts to increase childhood cancer awareness, treatment and research." In September, another 26 Members of Congress became co-sponsors of the Conquer Childhood Cancer Act, bringing the running total to 146 Representatives and 37 Senators. More letters are needed so that the act may pass. In addition, while September may be over, childhood cancer is not. Children just as special as Chris are still dying every day. So, we thank you for contacting your Congressional representatives, as well as for supporting activities such as Alex's Lemonade Stand.

As always, we remain very interested in any "Chris stories" that you'd like to share, whether they be something he did that you observed or how he may have impacted you in some manner. We are grateful to you all, for staying in touch. We still occasionally hear from people, from lots of places including other countries, who share how Chris touched their lives and they still think of him. Most of those comments reflect little things that Chris did that helped them or someone else, or that showed how he cared about how someone else was feeling. If something like that comes to mind for you at any time, we'd love to hear about your memories. Meanwhile, the Pongojimmy updates continue below. We've got a bunch of them for you this time, especially to make up for so much time passing since our last update. We hope that you enjoy them.

Joke of the day: What kind of critters do secret agents like? Spy-ders.

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Little Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Christina, Daniel, Bobby, Luke P., Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds.

Chris, we miss you!

Love,

Mom and Dad

www.caringbridge.org/fl/chrisbecker

11 Aug 97

Mommy went back to da wibwarwee to work on her cwasswork. I hung out wif Daddy. We went shopping and also pwayed at Pongojimmy. (Actualwee, I pwayed and Daddy cweened and did maintenance.) I helped cween too. I had a diaper wipe and washed my arweea at da table. I got a gold star for cweening.

12 Aug 97

We had to get up early dis morning to take Pongojimmy to da shop. Daddy said dat it was pulwing to da wight. So, we had to bwing Pongojimmy down to Kansas City to go to da shop. After we dwopped it off, we all went to Old McDonalds for bweakfast. Know what? Dey had a pwaygwound! And, acwoss das stweet, der was a pubwic wibwaree about a bwock from here.

So, Daddy and I did waundwee while Mommy studied. When we finished, Daddy and I went to da wibwaree and wed childwen’s books and pwayed wif da toys ‘til Mommy was weady to go. By den, it was time to go see how Pongojimmy was doing. So we dwove back to da shop. Pongojimmy wasn’t quite weady, so we waited in da waiting woom. Dat’s where I was dwinking my Coca-Colwa. All of a sudden, I was wearing my Coca-colwa all ober my shirt and shorts. I don’t know how it happened.

Anyway, Mommy went out to Mitzi and got some new cwothes for me, den took me into da shop bafwoom to change my cwothes. But I was so antsy, I almost fwew my new shirt in da toywet.

Eventually, we all got dwiving on da woad. We headed norf to Omaha, Nebwaska.

13 Aug 97

Da volksmarch in Omaha started acwoss das tweet from da zoo (although Mommy and Daddy didn’t tell me dat). We got started at da state fish and game bisitor’s center and walked up 10f Stweet. It’s not an interesting stweet, except for one pwain house where somebody named Fwed Astaire used to wive (#2326 10f Stweet). We stayed on 10th Stweet for a wong time, until we got to Union Pacific Wailwoad Headquarters and Wailyard. Engines! Once we got past dat, it got pwetty.

We walked fwew da Con Agra office park, which was berry nice. It’s a big company dat I never heard of before. But I tink dey buy da gwain dat da farmers gwow and make fwozen dinners out of it. Dey had a sign wisting just about ebery fwozen food bwand found in da supermarket.

Anyway, awaound back of Con Agra is a berry pwetty wake wif a big fountain in it (Heartwand Park). We also walked ober a bwidge to overwook da Missouri Wiber. On a bit furder, we walked awong a boardwalk area wif a big silber swide area. I had to cwimb up a wot of stairs, den da first time, I cut in fwont of a wine of bigger kids waiting to go down das wide. Mommy “yelled” at me when I came down. I didn’t meant to do it – I was just excited to twy da big swide. I did it wight da next time.

Den we saw a big statue of some pioneers (Heritage Statue), before walking into da shopping arwea. Mommy bought a couple of Cwistmas ornaments. We had to finish up our walk because we had to dwive norf some more. But we did notice dat der was a pwetty big population of Ukrainian and Slavic people in dat city. We bought some Lithuanian pastwees to eat. Mommy and Daddy said dat dey tasted wike German apple tortes, but heavier.

Pwesident Gerwald Ford was born here, too, but we didn’t see his house. Anyway, we dwove nof on I-29 to Souix Falls, Souf Dakota. A new state! Map stuff!

14 Aug 97

It sure is fwat awound here. But Souix Falls wooks wike a nice town, nicer dan Omaha. It’s a small city dat twies to keep da community livened up wif cultural ebents (pways, concerts, etc.). Part of dis walk went awong da Big Souix Wiber, den back into da neighborhoods. Ordinary middle cwass houses. But we passed an elwamentawee school wif a berry nice pwaygwound! We pwayed der a wong time and I woved eberwee minute of it!

For some weason, da walk did not go by da Souix Falls, which gib da city its name. So, after da walk, we dwove a few bwocks, past some constwuction. Den we found da waterfalls! Onlwee awound da falls was der some wed wocks. Da falls weren’t big, but dey were pwetty. Daddy and I cwimbed on da wocks while Mommy took pictures.

Den it was norf again to Fargo, Norf Dakota. We actually camped across da wibber in Moorhead, Minnesota, because dat was where da best campgwound was.

15 Aug 97

Fargo is da cwosest ting we’ve seen to a big city in a while. Dey had a big shopping mall arwea. But first we went walking. Dey hab a nice, old-style center of town. We had to turn wight at da wailwoad twacks and da statue of da oxen team. It’s a colorful statue, but not berry pwetty. It does show a wot of gwit, determination and hard work. Next, we walked thwough a nice neighborhood wif big, old houses, at weast one of which has been owned by da same famiwee since it was built in da 1860s. Big, stone, some tudor-style, some not, homes.

Eventualwee, we camed to Roger Maris Park. He pwayed basebawl for da New York Yankees in da wate 1950s and earlwee 1960s. He was famous for hitting 61 home wuns in 1961. He must sure be old! But he gwew up in Fargo and was a good, awl-awound athweet: basebawl, basketbawl, footbawl . . .

Dat park was next to da Wed Wiber of da Norf, so we walked der next. Da paf was a widdle bit muddy, and we saw a big twee waying sideways. But I didn’t tink any more about it. As we kept walking, it got cooler, and windier and darker. We walked awong da wiber for a while. It wooks wike a wazy, norf-flwowing wiber. After da walk, we went back to da mall. Daddy went to Wadio Shack, while Mommy and I went to see if we could get a haircut; we couldn’t because dey had too many appointments. So, Mommy and I walked awound a widdle bit, den sat down because I was too tirwed.

After we met up wif Daddy, we went to da bookstore acwoss das tweet to get a couple of books for Daddy. We got him one about “How Tings Work” and one about how to patent ideas. He’s got 3 ideas he keeps tinking about. One is about how to make a 2 story mobile home, and anoder one is about how to make a self-cweening gwey/bwack water tank.

Anyway, it was wate by da time we got out of Fargo. So, we onlwee dwove as far as Gwand Falls, Norf Dakota. Mommy went into da campgwound to wegister, wike she always does. While in der, she saw photos of da whole campgwound under water! Dis campgwound is about 5 miles from da Wed Wiber, so dat was a big fwud! Mommy said dat after she saw da pictures, she wemembered hearing about a big fwud up here. But she had forgotten about it because it happened about da same time as da Ohio Wiber fwuded. Dat’s da wiber near Gwannywyn and Gwanddad’s house.

Anyway, we got in to da campgwound earlwee enuf to pway at da campgwound’s pwaygwound. A big girl at da pwaygwound helped fill sandbags to shore up da levee at Moorhead, Minnasota. It held der, but not up at Gwand Falls. Da whole town was under water. Madder a fact, dis campgwound is half full wif guberment-issued campers for dos familwees dispwaced by da fwud.

Oh yeah, I forgot to say dat we went to wunch in Farge at da Wone Star Steakhouse. I calwed it da “Wed Star,” where I can fwo peanut shells on da fwoor. Anyway, Mommy and I surpwised Daddy wif a big ice cweem bwownie dessert for his birfday. It’s not his birfday, so it wealwee was a surpwise! And, . . . Daddy shared his ice cweem!

17 Aug 97

Today is Daddy’s birfday. Mommy got me up, dwessed, den gabe me some prwesents to gib to Daddy. He got a couple of shirts fwom Gwannywyn and Gwanddad, some CDs and tapes from Mommy and me, pwus udder stuff, and I gabe him a card dat I made for him. Mommy and I sang “Happy Birfday” to him, and we ate smiley face cookies instead of a birfday cake. (I wanted to gib him a cherry cake, but Mommy couldn’t find any.) I tink he wiked all dat. I helped him open his prwesents. He didn’t get any toys. Poor Daddy . . . After all dat, we started dwibing norf again. We went all da way into Manitoba, Canada.

It sure is fwat. Miles and miles of corn! Sometimes sunfwowers and weet, but mostwee corn. We dwove on to Winnipeg and got der earlwee enuf to go walking. So dat’s what we did.

Der was a stweet festibal going on, but not berry interesting. Some punkers but dey were acting ok. I did see wots of Indians, especialwee Innuits, who Mommy tinks are fwom Eskimo countrwee. Wots of cultural gwoops in Winnipeg: Chinese, Ukrainian, etc. We camped just west of Winnipeg. Wots of mosqueetos der, but I pwayed at da pwaygwound anyway.

Oh yeah, Daddy had twubble dwibing awound Winnipeg because of da strweet festibal, which closed a strweet dat we were supposed to dwibe on to get to da walking start point. Den, when we found a parking wot, Daddy found out dat we had been towing Mitzi wif da parking bwake on for at weast 1 ½ hours. He was not happy. I guess you’re not supposed to do dat.

Da walking start point was at da probincial legislative building, which is open all day, eben dough today is Sunday. We saw seberwal couples all dwessed up to get marweed. Also saw a church dat apparwentwee had been burned down, but dey sabed da shell ob it. Dis was at da “Francophone” part of town and I don’t know what happened to dat church. Der was a smalw pwaygwound in a park near da church, so I pwayed der, as well as 3 udder pwaygwounds on dis walk. But, I was getting gwumpy. I don’t know why. Mommy tinks it’s because I’ve been sitting in da camper for so wong.

18 Aug 97

We spent most of da day dwibing west, into Sasketchewan, da next pwobence west. It’s still berry fwat, and dey gwow wots and wots of weet. At da Welcome Center to Sasketchewan, dey had a statue of a Royal Canadian Mounted Polweeseman on a horse because Regina is home to da Royal Canadian Mounted Polweese School. Dey also had a big ox-wagon wheel.

We dwobe on into Regina (named after Queen Victoria). It’s got a definite “western” feel to it. But it also feels wike a weel city, too. Fwat pwarwee, and den da city. Our walk took us to dis wake, where der were a bunch of people in dose boats called “dwagonboats.” Da first person beats a dwum, which is supposed to signal da udders to stwoke da paddles togedder. All dees boats were pwacticing for a big contest-rwace on Wabor Day. Da national winners get to go to somepwace calwed Hong Kong to compete.

We walked all awound da wake. We also crwossed da Regina bwidge, which was decorated wif wots of what Mommy calwed “Rookwood pottery.” It also had pictures of buffalwo every so many yards. We also went by da wegiswature arwea.

We were hungwee becuze we finished da walk at dinnertime. I was wooking for Chuck E. Cheese (Mommy and Daddy said dat we could go der for my birfday), but we didn’t see any. Besides, Mommy wanted to see da “Mountee School.” So, dat’s what we did. It’s on da west side of town, and you can’t go inside. But Mommy took a picture. We also saw a big jackwabbit sitting in da yard near da guardshack. Den we weft and dwove east, toward our campgwound, but stopped for dinner at Bonanza.

Monday, May 28, 2007 9:14 PM CDT

Hi Everybuddy!

Well, it has been an incredibly long time since we've done an update. Perhaps it just seems that there just isn't much to report. But we did want to say hello to you all and to wish you all a very nice Memorial Day weekend.

We went on a nice volksmarch at Crystal River Preserve State Park yesterday after visiting at Chris' cemetery yesterday. This particular walk was a little longer than most (they are usually 10 km long, but yesterday's was 13 km, or about 8.08 miles). Aside from a few stinging flies and ticks (amazingly both Pat and Alison found at least a dozen ticks on themselves, but Genie didn't seem to have any -- and she's been brushed several times since the walk), it was a beautiful walk in the woods in an area with about 30 natural springs that generate about 600 million gallons of fresh water each day; it's also well known for being a manatee habitat area. We did not see any manatees yesterday, but we did see at least 3 wild pigs and a deer.

Eight years ago this past Friday, we began the ordeal of helping Chris fight neuroblastoma, a disease of which we had never heard of before. As horrible as that day was (Chris had been bruising easily and was a lot more tired than most other 5 year olds, but on May 25, 1999, he first began to cry due to pain from one of the many tumors, particularly the one on the bone under his eye), at least we got a diagnosis for him and were able to get started with treatment right away. And despite the obvious problems along the way, Chris made the most out of the hand that was dealt him. We miss him and unquestionably always will.

Since the last time we wrote, Chris was remembered by one of his friends in New York; James allowed his head to be shaved again in this year's St. Baldrick's event; he and the others participating at his event in Central Park raised almost $163,000 for childhood cancer research. More recently this month, also in New York, there was again the "Kids Walk for Kids With Cancer" walk through Central Park. That event has been organized in the past by the older sister of another one of Chris' friends (Simon) in New York; this year Simon worked on the fundraising end of things. Last year's event raised over $105,000 (we haven't heard about this year's grand total yet). Those are incredible figures for kids who are trying to help other sick kids.

We also learned that a Pulitzer Prize was awarded this year to photographer Renee C. Byer of the "Sacramento Bee." Her award-winning photos concerned the final months of a child with neuroblastoma in California. Her photos can be found at http://www.pulitzer.org/year/2007/feature-photography/works/. They are compelling and paint an accurate picture of what it's like to deal with neuroblastoma. But we want to warn you that this series of photographs is stark, inspiring and gritty so that you are prepared, should you choose to view them. We think that it's important that people know what it's really like to face this monster. Apparently so did the 2007 Pulitzer Prize Award Committee.

On March 15, 2007, the Conquer Childhood Cancer Act of 2007 was introduced at Congress. It is a landmark piece of legislation which authorizes $150 million over a 5 year period to expand support for biomedical research programs of the existing National Cancer Institute-designated multi-center national infrastructure for pediatric cancer research, establish a population-based national childhood cancer registry, enable researchers to more accurately study the incidence of childhood cancers and long-term effects of treatments, and provide funding for informational and educational services to families coping with a diagnosis of childhood cancer.

This may sound like a lot of money, but it really is just a tiny bit of the money available for cancer research (pediatric cancers typically get less than 2% of the cancer research budget), and offsets the budget erosion that has already occurred in the pediatric cancer research funding. Still, every little bit helps. As noted by the Chairman of the Children's Oncology Group, “Each day that pediatric cancer research goes under funded, the challenge to discovering new treatments and cures becomes more difficult and the lives of children are unfairly jeopardized.” Please consider contacting your Congressperson to support this. You can easily do so through the CureSearch website (www.curesearch.org) by clicking on "Send a letter to Congress" link below and enter your zip code. There, you may select pre-written messages or compose your own letter.

Along a more light-hearted line, the azaleas at "Chris' Corner" at the cemetery stopped blooming right after Easter. Aside from a week in March when there was a frost that knocked off the blossoms, they had been blooming non-stop since at least mid-October. Those plants were looking rather straggly after having devoted so much energy to blooming, but now they're looking greener and healthier overall.

Chris' friend, "Little Allie," made good enough progress with her recovery to have been allowed to return home for her 10th birthday last month. She continues with a very active physical rehabilitation schedule, but she and her family are so happy to be able to be home again.

As always, we remain very interested in any "Chris stories" that you'd like to share, whether they be something he did that you observed or how he may have impacted you in some manner. We are grateful to you all, for staying in touch. We still occasionally hear from people, from lots of places including other countries, who share how Chris touched their lives and they still think of him. Most of those comments reflect little things that Chris did that helped them or someone else, or that showed how he cared about how someone else was feeling. If something like that comes to mind for you at any time, we'd love to hear about your memories. Meanwhile, the Pongojimmy updates continue below. We've got a bunch of them for you this time, especially to make up for so much time passing since our last update. We hope that you enjoy them.

Joke of the day (especially for Chris' friend Greg): What's the difference between a dentist and a Yankees fan" One roots for the yanks while the other yanks the roots.

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Little Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Christina, Daniel, Bobby, Luke P., Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds.

Chris, we miss you!

Love,

Mom and Dad

www.caringbridge.org/fl/chrisbecker

3 Aug 97

Hannibal’s bery hilly – almost mountainous. We were going to do a volksmarch here, but da clwub apparwentwee disbanded & da walk doesn’t exist anymore. So we dwove awound a bit; saw da Tom & Huck statue. Hannibal, MO is an old town, sort of wike Newport, KY, but in da middle of nowhere. Mommy & Daddy thought dat da onlwee ding keeping dem awive is Mark Twain’s legacy.

We also dwove acwoss back into Illinois, but ders nofing der but corn. So, we went back to Pongojimmy at da campgwound & dwove souf on US 61 again to St. Lwouis. We found a campgwound in da city. It sure was hot! Da campgwound was asphalt, so dat made it feel hotter. We waited for a widdle bit, den wegistered for da volksmarch at da hotel. Den we went to da Union Station to wet da sun start to go down a bit.

Union Station used to be a bery important wailwoad station. During da 1940s, about 200 twains came der ebery day. Now it’s a shopping mall – a bery nice one. Dey eben had a twain store in der, but it was cwosed for inbentorwee. Mommy & I wode on da carewosell & ferwis wheel outside da station.

After a while, we started our walk. Coincidentally, it took us wight into da heart of da city’s annual “Strassenfest” (German for “stweet festival”). Den we went by some church (St. Joseph) where Rome decwared dat a miracle happened, but we didn’t know what. Da church was cwosed & we had no more information dan dat. After dat, we headed toward da old part of St. Lwouis, near da wiber. We also saw a casino on da wiber. Somebody said dat der was an Old McDonalds on a boat, but I didn’t see it.

We couldn’t miss seeing da big arch. It sure is big!! But it was starting to get dark, so we kept going (after a quick wook awound) back to Union Station. Den we ate at a Chinese westaurwant. Mommy & I shared stwallberwee chicken, while Daddy ate something wif gween stuff in it.

4 Aug 97

Today we slwept wate. After bweakfast, we went back to Union Station to go to dat twain store. I got to pway der, but I alweady had one of eberything dat dey sold, except “Thomas da Tank Engine” gummies. So dat’s what I got, and I got it wif my own dollwar!

Anyway, we went on down back to dat big arch. First we saw a weally neat movie about da big parks out west (Wewis & Cwark’s explorwation). It was on a weally big scween. After dat, we went into a museum about “opening up da west.” But I was getting antsy, so Mommy & I went thwough pwetty fast. I did wook inside a tepee & saw animals wike a buffawo, ox & a horse, and inside a sod house.

Der’s a “pool” inside da middle of da compwex. Dat’s where Mommy & I waited for Daddy to go thwough da museum (he went to da bafwoom while Mommy & I went to da museum). While we were waiting, I thwew pennies into da pool.

Den it was time to watch a movie about how dey built da arch. It’s 630 feet high and it was pwetty tough to build. Den it was time to wide up da twam, all da way to da top of da arch. Cwang, cwang, cwickety cwack. Once we got up der, we wooked out some widdle windows on da city, and on da wiber and fields of Illinois.

5 Aug 97

We started today by going to Gwant’s Farm. It’s where some old Pwesident Gwant used to wive. (Actually, it was his wife’s famiwee’s farm. While he was in da Army in da wate 1840s, he met his wife while stationed here. Den he got twansferred to California during da Gold Wush Days & weally missed his den-fiancee’). Anyway, dey had a zoo der & some Cwydesdale horses, but it was so cwowded dat der was no woom to park Pongojimmy. So den we just started dwiving west acwoss Missouri. It took all day going on I-70, and we pulled into Basswood RV Wesort at Platte City, MO.

It’s outside Kansas City, where Daddy used to wive. Actually, Mommy & Daddy told me dat I used to wive here, too, when I was a baby. Dey said dat Mommy went to school here (at Weavenworf, KS), & she bwought me & somebody named Winda wif her. I don’t wemember.

6 Aug 97

Dis morning, we stayed at da campgwound & did waundwee. I helped too. But while da cwothes were washing, Daddy & I went to da pwaygwound. We ate wunch at Pongojimmy, den dwove ober to Weavenworf, KS. I don’t wemember it, but Mommy said dat dis is where I wearned to walk (Daddy had gone to some pwace far away calwed Soddy Awabia). Anyway we went walking thwough da city of Weavenworf. It’s a mix of wun-down buildings & nice 100 year old homes. Halfway into da walk, we found a pwaygwound. I was happy! Shortwee after we finished der, I got sweepy & took a nap for most of da west of da walk. I did wake up in enough time to wun & jump a bit before we finished da walk.

7 Aug 97

We dwove back to Weavenworf to take Mommy to da wibrwarwee to work on her corwespondence course. But we went to da PX first for wunch. We had Anthony’s Pizza. Den some guy named MAJ Whipple came ober & at wif us. After a while, I went back to da corner to pway wif da toys der, while Mommy & Daddy talked to MAJ Whipple (Daddy’s old company commander). Den Daddy found somebody else he knw. Bottom wine: it took all morning & a widdle bit of da afternoon to get Mommy to da wibrwarwee.

After we dwopped her off, Daddy & I went over to Hoge Barracks to wegister for da Fort Weavenworf walk. Hoge Barracks is da building dat I used to wive in but I don’t wemember. Anyway, we walked all ober da fort. We pwayed at 4 pwaygwounds & saw some wagonwheel ruts dat Daddy said were made by wagons heading out west on da Sante Fe & Oregon twails a wong time ago. At da end of da walk, we picked up Mommy at da wibwarwee.

At bedtime, we did all da usual nighttime stuff (baf, put cwothes away, vitamin, gold stars, map stuff, bwush teef, water & stories). Mommy put 3 engines up in my bed, wike usual, which is how I had things before going to bed. But tonight I just felt wike helping Daddy. He wasn’t feeling well (headache or someting wike dat) so I went back to his bed, kissed his knee & told him date I had to do dat before going to bed. He smiled & hugged me. I tink I made him feel better. Mommy gave me a “HKT” (hug, kiss, tickle) and off I went to bed.

8 Aug 97

Mommy went back to da wibwaree. Daddy & I went to da bank and anoder office. We also went shopping and had a wot of time at da pwaygwound. We also went to da Wewis & Cwark State Park near Atchison, KS. Dey had big, weal engines! Mommy & Daddy keep pointing out engines to me. I tink dey wike dem more dan me.

Dat ebening we went to dinner at a wocal pizza pwace in Platte City wif some of Daddy’s fwiends & der kids (Hoovers & Boetig). Da Hoovers have 2 widdle girls about my size. Da Boetigs have more boys & girls, but dey’re bigger dan me. Afterward we followed da Boetigs back to Weavenworf because dey had some mail fwom Gwandpa for us. But we stopped at Dairy Quen for ice cweam first.

9 Aug 97

Today we took a vacation wif-in a vacation. We weft Pongojimmy at da Platte City campgwound and we dwove down to Okwahoma & Arkansas. We dwovee 4 – 5 hours souf through Missouri, den cut ober to Tulso, OK. Dey call dat part of OK “gween countwee.” It was gween, too! Der were some hills & twees, infwuenced by da Ozark Mountains. Tulsa is actually a nice city, not at all western-wooking. But da pwaygwound we saw wasn’t bery good. After we finished walking & pwaying, I was sweepy. So I fell asweep as Daddy dwove us into Arkansas.

We ended up staying at a nice Embassy Suites. It was a nice woom & I woke up just in time to walk inside da woom & eat ½ of a hotdog. I was in a weally good, sweet mood. I got my own bed & watch Daddy check his computer for email as we went back to sweep.

10 Aug 97

I woke up as Daddy was taking a shower. Mommy was still sweeping. Daddy came out & came ober to see me. We whispered engine stories for a while. Den Mommy got up & took a shower and I took a baf. We all went to da wobby & ate bweakfast. I twied to be good & chew wif my mouf cwosed. I was hungwee. I ate 2 waffles and a bowl of cereal. Den I ate yogurt.

After breakfast, we dwove up to Pea Ridge National Battlefield & Park. Daddy found out dat dey had a junior “Junior Wanger” pwogwam. So I went thwew da pictures of wifles and animals to da stuff in da museum. Den we did a volksmarch threw da park. I was still supposed to find a deer, a squirrel & a wild turkey. SoI was wooking for dem.

But it was a bery hot day. So, even though I wooked eberywhere, I didn’t see any squirrels, much wess wild turkeys. I did see one deer on da far edge of a field. I also saw a couple of wobin birds and a dead snake.

Da park wanger said dat dat was good enough. So he put his wanger hat on & did a “pinning on” ceremony on me for earning a “Junior Wanger” badge. Mommy took my picture and Daddy shook my hand. Eberybody clwaped & I was bery happy, but not sure what being a “Junior Park Wanger” means.

Monday, February 12, 2007 9:58 PM CST

Hi Everybuddy!

Two years ago on Valentine's Day, Chris went to the Tampa clinic for the last time. He fueled up on some platelets, and went through a couple of heart monitoring tests, then was ordered to go spend the night in the hospital in order to stabilize his upset digestive system by receiving IV fluids overnight before the "tummy tap" due the next day. As you know, he passed on two weeks later. Chris is sorely missed to this day.

But now is the time to think about some of the reminders that Chris left behind. Among the most important are Chris' friends, both here in Tampa and in New York. One of Chris' friends from New York is continuing to honor him to this day. You may recall that last year, James memorialized Chris in two major events: (1) he allowed his head to be shaved in last year's St. Baldrick's event which raises money for childhood cancer research, and (2) running in the Manhattan Ronald McDonald House Kids' Fun Run, wearing Chris' "retired" number (110). James is continuing his efforts, this time by again agreeing to have his head shaved for this year's St. Baldrick's event, specifically in Chris' memory. Basically, James is raising money for childhood cancer research; he needs sponsors before his head is shaved in order to be effective at this. Please consider assisting James in his efforts by sponsoring him. You can learn more, and sponsor him, by visiting http://www.stbaldricks.org/participants/shavee_info.html?ShaveeID=412&ViewDetails=children#. If for some reason the link doesn't work for you, then please go to www.stbaldricks.org, then search for "shavee" James Zobian of New York. Once you find James, you'll find Chris. James will be shaved on March 16, 2007 at the Central Park Boathouse. If you're near Central Park that day, please stop by the Boathouse and cheer him on.

In other news, we have learned from a major childhood cancer research fundraising organization, CureSearch, that federal funding for the National Institutes of Health (NIH) and the National Cancer Institute (NCI) has not increased in several years. "This, coupled with the fact that there has not been any adjustment for inflation, means that the actual federal dollars available for cancer research has been declining. The President’s FY 2007 proposed budget called for a $5 billion dollar cut in funding for programs that fall under the jurisdiction of the Labor, Health and Human Services, and Education appropriations bill. This is the source of funding for the NIH and NCI. Fortunately, some of the proposed funding was restored and some slightly increased during the appropriations debate during the last session of Congress.

Members of Congress must decide now how much funding to provide in 2007 to support research that is critical to everyone, adult or child, who faces a diagnosis of cancer. Please contact your Members of Congress today and let them know that they must increase funding for the NIH and NCI. This is not the time to slow the progress that is being made to cure childhood cancer."

In addition, the azaleas at "Chris' Corner" at the cemetery are still blooming, as they have been non-stop since at least mid-October. Now, some of the other azaleas around the cemetery and around the region are beginning to bloom.

Chris' friend, "Little Allie," is making steady, but still somewhat painful, progress as she heals from spinal surgery a few weeks ago. She is still receiving oxygen, but the concentration is down almost to the mixture that is contained in "room air." She and her parents are looking forward to someday (hopefully soon) being able to breathe ordinary air. She continues to undergo therapy, and was able to recently use her walker to go to the hospital gift shop standing up (rather than via wheelchair). She is a very remarkable girl.

As always, we remain very interested in any "Chris stories" that you'd like to share, whether they be something he did that you observed or how he may have impacted you in some manner. We are grateful to you all, for staying in touch. We still occasionally hear from people, from lots of places including other countries, who share how Chris touched their lives and they still think of him. Most of those comments reflect little things that Chris did that helped them or someone else, or that showed how he cared about how someone else was feeling. If something like that comes to mind for you at any time, we'd love to hear about your memories. Meanwhile, the Pongojimmy updates continue below.

Joke of the day: What do you get when you pour hot water down a rabbit hole? A hot cross bunny.

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Little Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Christina, Daniel, Bobby, Luke P., Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds.

Chris, we miss you!

Love,

Mom and Dad

www.caringbridge.org/fl/chrisbecker

1 Aug 97

Dis is a big day cuz we’re walking in 2 states. Hot & sunny again! First we cwossed ober to Wock I-wand, Illinois and walked der on da milwitarwee post. It’s a Core of Engineers pwace. Dey’ve got a bwidge dat swings out in da middle of da Mississippee Wibber weneber somebody wants to go thrwew da wocks and awound da dam. Der was a tank test twack on da back of Wock I-wand. It was pwetty hot, so after da walk, we dwove ober to Davenport and ate wunch at KFC (any pwace but old McDonalds). We just wanted to get into da AC.

Turns out dat der was a high school cheerleading camp going on acwoss da stweet. Dad waughed about it but (powitewee) sat wif his back to da window. Den a couple of 18 – 20 year old boys came in and sat down by da window and watched da camp. Mom waughed about dat. Big deal – who cares.

After wunch, we started da Davenport walk. It wasn’t all dat exciting or pwetty a town. But it did have a casino. We walked mostwee awong da wiber, passing some sand and concweet compasses. Awong da pwettiest part of da wiber were gazillions of BUGS!! UGGHH!! Dey were harmwess and onlwee wive one day, but dey sure swarmed eberweewhere. I was so scared!! Mommy and Daddy didn’t wike it eiber, but dey twied not to tell me. After we made it thrwew der awive, we crwossed ober to East Davenport, wif some cutesy, quaint shops, den finished up. Davenport’s just not dat nice of a town. But it is a mid-western cwosswoads.

2 Aug 97

Today we dwove most of da day from Davenport, down US 61 to Hannibal, Mosuree. Dat’s where Tom and Huck used to pway.

I didn’t feel good today – had a feber and had to take Tywenol all day. I took a wong nap cuz I was tired. Mommy and Daddy thought dat maybe I was exhausted from da heat yesterday. Dey kept telwing me to dwink and eat pediawight popsicles.

So, we took it easy today and didn’t go walking, eben though we had time. Instead, because I was feelwing a wittle better by da time we got to da campsite, and because we camped at Mark Twain Cave and campgwound, we took a tour of da cave. It was nice and cool in der – and der were wots of side passages in der. It’s a drwy limestone cave, so der were none of dos pointy tings. But dey said dat Mark Twain and people from his day knew it bery well. I beweeve it, too, because ober da years had signed der names eider by scrwatching it into da wock, by painting, or using candle smoke. Da tour guide said dat Tom and Becky got scared in der after some big guy calwed Injun Joe chased dem in der, and dat Injun Joe’s tweasure was buried in der. Dey alwso said dat Jesse James hid out in dis cave. Also, his cousin wrote his name in da cave more dan 250 times.

Saturday, January 20, 2007 9:41 PM CST

Hi Everybuddy!

Happy Birthday, Chris! He had really looked forward to becoming a teenager. That's a real "right of passage" as the parents of pre-teens among you know. Chris liked to think of himself first as a "medium-size kid," and when he hit the double digits, he let us know that he was officially a "pre-teen." Well, today he would have been officially a teenager.

Thirteen years ago today, Mom awoke Dad at around 2 or so in the morning to let him know that it was time to make a drive across an icy Washington DC area to Bethesda Naval Hospital in Maryland. Some 17 hours later, we were introduced to Chris. He was a beautiful, big baby (10 lbs., 3 1/2 oz.), and was an absolute joy for us throughout the 11 years, 1 month and 8 days that we had with him here.

Today we marked his birthday by attending an organizational meeting for a new program under development at Chris' local hospital. This new program is being designed to create a better outreach program for families dealing with life-threatening illnesses of their children. This is still under development, so we'll have to provide comment later about the specifics, but we can say that there is serious attention being paid to the experiences (positive and negative) of parents who have already been through such trauma.

Once again, more time has passed since our last update than we would like, so let's catch you up on the goings-on. We spent Thanksgiving here in Tampa, visiting with the family of Chris' best friend here, Greg. We really enjoyed that, not only keeping in touch with them, but just the easy small family-style atmosphere of the holiday. The holiday season passed quickly, and this year we went to Norfolk, VA for Christmas. As we were driving up that way, Grandpa was admitted into the hospital for a radiation therapy-related infection. He got pumped up on some antibiotics and was able to be released from the hospital in the early afternoon on Christmas Day. Later in the day, we all went over to Cousin Sean's home, since he was hosting Christmas dinner. It made for an unusual kind of a Christmas holiday (at least unusual for those who are not used to the cancer world, but perfectly normal to us), but a good one none the less.

We were home in time for the New Year's holiday. Just a couple of days later, we were honored to attend the induction ceremony of Greg's older brother, Tommy, into the honored Boy Scout rank of Eagle Scout. Because he's an Eagle Scout himself, Dad had been asked in advance to recite the Eagle Scout Challenge and Charge. Unbeknownst to us though, just before Pat was to speak, Tommy publicly thanked Pat for some inspiration that he had provided to Tommy over the past few years, and presented Pat with a token of his appreciation. When Pat went up to speak a few moments later, there was an overwhelming sense, at least those in the audience who knew of the connection that Chris played in bringing these two families together, and in some way, Chris played his own role in helping Tommy along. Not everyone in the audience understood this since an Eagle Scout ceremony involves a larger community, but those close to Tommy and Dad understood. And it made the ceremony all the more special.

We also wanted to give you an update on those amazing azaleas at "Chris' Corner" at the cemetery. The azaleas have been blooming profusely non-stop since at least mid-October. Throughout the holidays and even until now, there have been more red blossoms than ever before. In fact, there are so many blossoms that the bushes themselves are still small and have few leaves because all of the plants' energy goes into the continuous blooming. It really is quite phenomenal, and comforting.

In other news, Chris' friend, "Little Allie," just underwent her spinal surgery a couple of days ago. The initial news appears to be promising, but not enough time has passed since the surgery. She began weaning off of the ventilator today, and the doctors are hoping to remove the breathing tube tomorrow. After that, she'll be monitored to see how her carbon dioxide exchange is (as you may recall, the underlying issue is that she has not been able to exhale enough carbon dioxide from her lungs with each breath on her own). We're of course hoping that she will soon see marked improvement along those lines very soon. Her surgical bandage runs the entire length of her spine, but her parents have commented on how "beautifully straight" her back looks now. "Little Allie" sleeps a lot due to the medication, but when she is awake, she uses a small "white board" to stay in touch and is generally in good spirits.

As always, we remain very interested in any "Chris stories" that you'd like to share, whether they be something he did that you observed or how he may have impacted you in some manner. We are grateful to you all, for staying in touch. We still occasionally hear from people, from lots of places including other countries, who share how Chris touched their lives and they still think of him. Most of those comments reflect little things that Chris did that helped them or someone else, or that showed how he cared about how someone else was feeling. If something like that comes to mind for you at any time, we'd love to hear about your memories. Meanwhile, the Pongojimmy updates continue below.

Joke of the day: What do you get when you cross poison ivy with four leaf clovers? A rash of good luck.

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Little Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Christina, Daniel, Bobby, Luke P., Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds.

Chris, we miss you!

Love,

Mom and Dad

www.caringbridge.org/fl/chrisbecker

29 Jul 97

Today we went walking in La Crosse, WI (after Mommy and Daddy took a couple of side twips to Gander Mountain Store and a bookstore – dey wouldn’t wet me go to Chuck E. Cheese!). It’s on da Missasippee Wiber and has a big statue of an eagle and a big Indian. Did you know dat Indians used to come here and pway games? Dey pwayed a funny game wif a net on a stick calwed “wa-cwoss.” We went by a store dat sold cheese hats and shirts. After da walk, we dwobe on a pwetty countwee woad to a campgwound at Spring Gwove, Minnesota.

We had to dwibe on a dirt and gwabble woad to get to da campgwound, but once we got der, it was nice. It was webel gwound (important for Pongojimmy), but up against da Missasippee Wiber bwuffs. Dey also had der own walking twails in back. We walked ober a wooden bwidge ober a cweek and saw 2 woodpeckers.

30 Jul 97

We did a volksmarch in Spwing Gwove. It’s a charming small town, where eberybody waves, smiles and says hi – and has bwonde hair. It’s a bery Norwegian town, and is small enuf dat da volksmarch covered ebery inch of da town.

Dey also make der own soft dwinks: Spring Gwove Pop. Da bwack cherry is da best, but dey also make orange, woot beer and cweem soda.

Den we had to dwibe souf to Iowa. It’s dis whole oder pwace. We went walking in Cresco, but by den, I was getting tirwed & fell asweep halfway into it. So, I missed da engine, caboose & box car parked downtown. But I did pway at da pwaygwound and saw some bigger boys wif a bwown toad.

After all dat, we dwove furder souf to da campgwound at Spook Cave, near McGregor, Iowa.

31 Jul 97

We started da day, after bweakfast, wif a tour of Spook Cave. We had to wide in a widdle boat and lean down so as to not hit our heads on da cave ceilwing for da first 100 feet or so. Da wady tour guide turned off da wights – it was dark!! She also told us about da ghost of a former employee. It’s cool in da cave.

Den we dwove souf to Dyerville, Iowa. Dat’s where I pwayed catch wif Daddy at a ballfield in a cornfield. Dey made a movie here a few years ago, calwed “Field of Dreams.”

After dwibing back da dusty 3 miles into Dyersville, we stopped for wunch at a westerwant in a barn. But you know what? Just acwoss da stweet was an outwet store for farm toys. Wots and wots of farm toys. Know what else? Dey also distwibute Thomas toys. I got a new Toby and Bertie, but dey were metal.

On da woad to Davenport.

Sunday, November 19, 2006 8:18 PM CST

Hi Everybuddy!

Guess it's about time to catch you up on what's been going on with us. The first thing is to let you know that Grandpa had his surgery on his leg (there was a tumor there), and now he's undergoing radiation therapy to his leg. He's got a leg brace, but he quickly graduated from a walker to a cane. So far, he's really been recovering very very well, and is looking forward to being able to drive again soon.

The other medical update is on Chris' friend, "Little Allie." Since we last reported on her, she has been fitted with a "halo" traction device, which has been attached to her head. It is designed to help straighten her spine somewhat so that the doctors can determine how much of her breathing troubles are related to her scoliosis and how much might be related to late effects of the chemotherapy that she received to fight neuroblastoma. Despite the halo, she is still struggling with too much blood gas and carbon dioxide (because she can't take proper breaths to exhale the carbon dioxide). She is also dealing with some elevated heart rates. All in all though, she is improving to the point that the doctors believe that she is now a candidate for spinal correction surgery, with a goal of trying to improve her ability to draw/exhale full breaths. There has been no date yet set for the surgery. But her parents are specifically asking for prayers on her behalf.

As you may recall, our volksmarch (walking) club sponsored a "Fall Fun Walk" at Sawgrass Lake Park in St. Petersburg. That particular walk was also our club's way of marking National Childhood Cancer Awareness Month by sponsoring an "Alex's Lemonade Stand." It helped raise about $800 for the charity, which helps kids like Chris try to survive their cancer "one cup at a time." (As you may recall, Alex died of neuroblastoma, the same disease that killed Chris, only about 6 months before Chris.) We think that was a pretty good amount, especially since it had not be advertised widely, and we are grateful to all who made that a success. You can learn more about "Alex's Lemonade Stand" at http://www.alexslemonade.org.

You may remember that Chris loved to read. One of the book series that he read was the "Series of Unfortunate Events." He correctly predicted about 3 years ago that the author, Lemony Snicket, was going to write only 13 books in this series, and that the last book would be released on a Friday the 13th. We had to check it out, on Chris' behalf. We don't really think that he would have liked that last one, but then again, it was a series of unfortunate events.

Up at the cemetery, the azaleas at "Chris' Corner" are blooming again. There have been blossoms for at least the past month, and there are quite a number of buds that should be open next week, too, if the weather doesn't dramatically change.

Chris' good friend in New York, Simon, donated a paving brick to Chris' school. We saw where it was finally installed into the path recently. Thank you, Simon -- that was very touching. Another one of Chris' New York friends, James, recently ran in the Ronald McDonald House's Fun Run, in Chris' memory. As you may recall, after Chris died, the RMH "retired" the last race number assigned to Chris when he ran the race (# 110). Both last year and this year, James ran the race in Chris' memory. This year, even though the weather was cold and James was not feeling well, he ran it and came in 4th place. Then he was thoughtful enough to send to us the t-shirt that he earned, along with his race number and the photo of Chris that he pinned to himself as he ran the race. We are very grateful to James for his effort and thoughtfulness.

Other than that, we've both been busy with work. Mom in particular has had a series of short business trips. We're going to be home for Thanksgiving though, spending the day with the family of Chris' best friend, Greg.

As always, we remain very interested in any "Chris stories" that you'd like to share, whether they be something he did that you observed or how he may have impacted you in some manner. We are grateful to you all, for staying in touch. We still occasionally hear from people, from lots of places including other countries, who share how Chris touched their lives and they still think of him. Most of those comments reflect little things that Chris did that helped them or someone else, or that showed how he cared about how someone else was feeling. If something like that comes to mind for you at any time, we'd love to hear about your memories. Meanwhile, the Pongojimmy updates continue below.

Joke of the day: What do you call a computer superhero? A screen saver.

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Little Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Christina, Daniel, Bobby, Luke P., Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds.

Chris, we miss you!

Love,

Mom and Dad

www.caringbridge.org/fl/chrisbecker

26 Jul 97

Happy burfday, Gwamma and Gwanddad! Today it was waining a widdle bit when we got up, but swowly it cweared up. We dwove over dat big bwidge and up I-75 to Sault St. Marie, about 1 hour norf. Der we saw da wocks callwed “Soo,” and built by da Wad Department. We also went on board a Gweat Wakes ship dat was a museum all about Gweat Wakes twansportation. Der were aquariums wif fish. I danced wif one of dem.

Mommy and Daddy wiked da dispway about some ship cawled “Edmund Fitzgerald.” Appairwentwee, dat ship sank in Wake Superior in a sudden storm in Nobemeber 1975. A bunch of people died, too. Now dey tink dat it scwaped its bottom on da wocks. But da ship did not have a fathometer and was using charts fwom 1919. Oder dan dat, it was a thurolee modern ship wif a good weputation.

Anyway, we dwove fwew town a bit till we came to a park on da west side. Der, we got out and pwayed at da pwaygwound and spwashed in Wake Superior, just wike we did at all of da Gweat Wakes.

Mommy fixed wunch in Pongojimmy, as Daddy dwove acwoss Michigan’s Upper Peninsuwa. Not too many people wiv der, but der are wots of twees. Mommy and Daddy saw a big shaggy dog-wike animal. At first dey thought it was a coyoute, but water dey wealwized dat coyotes are not bery big. So it must have been a wolf. Anyway, we kept dwiving until we got to Whinewander, Wisconsin.

Mommy’s fwiends, Miss Jenny and Mr. Marcel wive in a neat widdle wooden house in da woods. Da house is next to a wake and dey just bought anoder 250 feet of waderfwont. We walked down to da pier. More importantwee, dey have a widdle baby girl. McKinwee is 16 months old and can walk bery well for a baby. She makes wots of noise but I can’t hardwee tell what she’s saying. McKinwee shared her woom wif me. I told her “tank you for sharing.” She swept downstairs near her Mommy and Daddy.

27 Jul 97

Eberybody got up awound 8 a.m. I felt much better. I was so tieward wast night. McKinwee shared her toys wif me and we pwayed until her Mommy said dat it was time for bweakfast. Miss Jenny made German pancakes, wif apples, fwom scwatch, not from da fweezer. Mommy ate dem, but not me. Dey didn’t wook wike da kind Mommy makes for me. So I ate waisin bwan instead. McKinwee smeared hers all ober her face.

After bweakfast, McKinwee, Mr. Marcel, Daddy and I went out to pway at McKinwee’s pwaygwound. It’s fun to swing! A widdle while waiter, der fwiend, Jennifer, came to visit. Jennifer had helped Miss Jenny wif her powitical campane a couple of years ago. Jennifer’s Mommy and Daddy were killed at a fast food westerwant 4 years ago. She was nice to me. While she was der, Miss Jenny’s Mommy and Daddy came to visit and go swimming in da wake. I sat on da pier and spwashed wif her gwamma. Den we went back and ate hot dogs, homemade macawoni & cheese and fwuit salwad.

Da best part was after wunch. We went for 2 boat wides! Mr. Marcel put da 13 foot welyo boat in a medium-size wake, and we went awound a couple of times. Den Daddy and Mr. Marcel moved da boat ober to a much bigger wake. Da “bump-bump-bumps” were fun!! Da wind in my face – ahhh!!

After touring Whinewander, we den went to da White Stag westerwant. Der was a big white tail deer out fwont. Mommy and I shared some pork chops. I made McKinwee waff wif my M&M giggle box. As we dwove home, McKinwee and I held hands and wistened to a tape wif bwues music for boys and girls. I wiked “Pancake Man.”

28 Jul 97

Mommy spent most of da morning making business phone calls & putting tings away in da camper. Daddy was finding out if “we’ve got mail” on da computer. Meanwhile, I pwayed wif McKinwee’s toys, especialwee her gween trwactor. McKinwee pwayed wif her books and musical instruments, and I dwove awound and awound da center arwea near da firepwace. Mommy and Daddy hoped to weave before noon because Mr. Marcel had to take a business twip to Wos Alwimos, NM dat afternoon. But as it turned out, we weft after wunch.

Miss Jenny and Mr. Marcel watched as Mommy and Daddy put Pongojimmy, Dolwee and Mitzi togeder, den we dwove off on up da woad. I said bye-bye and gave McKinwee a pwetty Magic School Bus postcard.

We dwove up da woad a bit, den had to pull ober to we-woad Mitzi on da twailwer. She had gone up on Dolwee at an angle because of da curve and swope of da dwibeway. So Mommy and Daddy put it on swait, and away we went. We dwove soufwest toward WaCwosse, Wisconsin. We camped at West Salem.

After settwing at da campsite, we went into town and found a movie theater, so we all watched “George of the Jungle.” It’s fun to go to da movie theater because it’s a big TV and Mommy and Daddy buy popcorn for us to eat! When da movie was ober, it was wate, so we got a kids meal at Hardees, where I had such a diaper expwoshun dat da wee-wee wan down my wegs and got my socks & shoes wet. Mommy changed me and I weft Hardees wif only my shirt and new diaper on.

I was wealwee tired by da time we got back to Pongojimmy, but Mommy and Daddy tol me to wook up at da stars. Der were so many – more dan I’ve eber seen before. I could eben see da Milky Way. Neber seen dat before!

Sunday, August 27, 2006 8:42 PM CDT

Hi Everybuddy!

Things are fine with us, except of course, that's it still much too quiet around here without our boy. Genie's continuing to do her part to keep us entertained though.

Chris would have been thrilled yesterday, had he had a chance to see his Dad fly a helicopter for the first time in about 18 or so years. He did fine: both the flying machine and his instructor pilot survived unharmed. It must be kind of like riding a bicycle, but a little more complicated. His birthday was the excuse to get him up in the air again, and he was able to soar over Central Florida for a little more than an hour.

We also wanted to update you on a few people. The first is Chris' friend, "Little Allie." Right now, she is not a candidate for lung transplant, but it is possible that her lungs may not be as diseased as initially thought. It's way too soon to say, but one possibility is for her to undergo back surgery, to help straighten out scoliosis (unhealthy sideways curvature of the spine). If her spine straightens, then maybe her chest cavity will expand enough to allow her to draw in more air (and exhale more carbon dioxide) with each breath. Of course, there are risks, particularly since the use anesthesia alone requires good oxygen circulation throughout the body. So, while her parents and doctors try to figure all of that out, she goes to school as she struggles to breathe. Going to school is such a tremendously big deal for these kids like "Little Allie," Chris and all the rest of his friends, who spend so much energy just trying to stay alive. School is more than an education -- it's their tie to "normal" and it's their vision of hope.

Grandpa is still waiting for the final biopsy confirmation (the first one was inconclusive and had to be repeated), but it appears that he has cancer. It's believed to be liposarcoma, which is a fatty cell cancer. Hopefully he'll be able to start some kind of treatment soon as he has recently been experiencing some pain as a result of it.

The wife of one of Mom's co-workers suffered a brain aneurysm rupture about 5 weeks ago. Although she still suffers from intense headaches and is not quite back to her usual very active self, she has made a remarkable recovery. She is home now, and seems to be well on the way to recovery. She still has to be careful in her recovery of course, but considering what the outcome could have been, she is very lucky indeed.

All three of these people have expressed how much they appreciate all of your thoughts and prayers of support and hope that it continues.

For those of you who live in the Tampa Bay area, we'd appreciate it if you could mark Saturday, September 23, 2006 on your calendars, then join us for a "Fall Fun Walk" at Sawgrass Lake Park in St. Petersburg. Our volkmarch (walking) club is sponsoring the walk, which will go over boardwalks through red maple swamplands to lakeside viewing areas. Even though this is a city park, there have been sightings of wildlife, including eagles. It should be a beautiful walk (not a race), designed for families and friends to just catch up with each other as they get a little exercise. But, what makes this walk extra special is that this particular walk will be our club's way of marking September as National Childhood Cancer Awareness Month. We'll have an "Alex's Lemonade Stand" to help quest the thirst of the walkers as well as help kids like Chris try to survive their cancer "one cup at a time." (As you may recall, Alex died of neuroblastoma, the same disease that killed Chris, only about 6 months before Chris.) You can learn more about this particular walk on our club's webpage, http://home.tampabay.rr.com/sandpipers/sndpiper.html, then clicking on the "Sawgrass Lake" emblem. You can learn more about "Alex's Lemonade Stand" at http://www.alexslemonade.org. Please join us there!

As always, we remain very interested in any "Chris stories" that you'd like to share, whether they be something he did that you observed or how he may have impacted you in some manner. Meanwhile, the Pongojimmy updates continue below.

Joke of the day: What do jokes and pencils have in common? They're no good without a point.

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Little Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Christina, Daniel, Bobby, Luke P., Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds.

Chris, we miss you!

Love,

Mom and Dad

www.caringbridge.org/fl/chrisbecker

21 Jul 97

Got up earlwee today because Pongojimmy had to go to da RV store for new oil and just get checked out. So we dwopped off Pongojimmy and Dolly. Den we all got into Mitzi and dwove to Old McDonalds for bweakfast. While Mommy ordered pancakes for me, Daddy and I went to pway in da pwaygwound. When da food was weddy, we sat down near da fish tank and watched dem sim awound.

After bweakfast, Mommy and Daddy said we had to “kill time,” whateber dat means. So anyway, we went to Mejers. We had neber been der before, so we went to see what it was. Turns out dat it was wike a big Walmart wif a gwocerwee store in it. Mommy dwopped off some film to be developed. When we were finished der, we went ober to Eastgage Mall. By den, I had wots of energy, so I wan through da center sitting arweas in da malls. Awound and awound and awound! It was fun! But den it got firsty.

Meanwhile, Daddy took our cell phone back to Wadio Shak because it wasn’t wealwee digital. Huh?? Waiter, we went to Circuit City, where I watched “Toy Story” on a huge tv. Mommy and Daddy bought a new cell phone dat dey said was better. Finalwee, we went back to da camper store. Pongojimmy and Dolly weren’t quite weddy yet, so we had to wait a few minutes. Mommy calwed Gwannywin and Gwandad, den we weft.

We dwove awound Cincinnati on I-275 durwing wush hour. I was getting sweepy and finalwee fell asweep as we headed to Indiana. Mommy and Daddy woke me up in Batesville to eat dinner. Batesville is where dey make caskets. Cweepy! Anyway, I was still sweepy and not interested in eating. I whined enough dat we had to walk awound for a while. Den we ate at some old mansion house date serves German food. It was gweezy & ober-pwiced.

We dwove on a widdle furder norf and camped at a campgwound amongst da cornfields, not far from Indianapolis. Dis campgwound outside Gweenfield, was a weal “Mom and Pop” pwace. A widdle old wady checked us in, den told us to dwive up da hill, where a man told us where to park. Daddy said all da hook-ups were in funny pwaces. But he hooked up ewectric and water, and we all went to sweep.

22 Jul 97

Dis morning, it became obvious to Daddy dat we were told to park backwards in da site. Dat’s why da hook-ups were funny. Also, der was no woom to turn awound, so we had to make a tight turn behind da office (Mommy got out to move some cut firewood so we could make da turn). Den we had to weave da campgwound, turn awound in a nehborhood about a mile away, den come back and hook up Pongojimmy to sewer. Well, date got da old man working der alw excited. I tink he taught we were “gate-cwashers.” But it was ok once Daddy told him about da oder guy putting us in backwards. Anyway, once we were finished, we started dwiving norf. We stopped in Kokomo for wunch – at Discovery Zone!!

I got to pway der a wong time because der was a cell phone store next to it. Daddy had a man fwom der work on getting da cell phone talk to da computer [that was a novel idea in 1997]. While he was doing dat, Mommy and I pwayed in Discovery Zone. We spent a wong time in da ball woom especially! Eventually we had to get dwiving again. We ended up at Elkhart, Indiana.

23 Jul 97

Dis morning we dwove ober to Middlebury, IN in Mitzi. Dat’s where da Coachman factowee is [Pongojimmy was a Coachman Leprauchan RV]. We got der before da tour, so we went down da woad and found a big Amish/Mennonite shopping awea. We went to da bakerwee and bought some cookies and a smalw woaf of bwed. Den Daddy and I pwayed at da widdle pwaygwownd while Mommy went window-shopping at da quilts and oder sweaters and stuff.

After a while, we went back to Coachman. Den Daddy wealwized dat da tour would not incwude “Cwass C” RVs, wike Pongojimmy. Mommy found out it was because of some OSHA safetee wules. We were all disappointed, but we just dwove west toward Souf Bend, IN. First, we went for a walk in Berien County and Bi-State Park. It was in da woods – wif wots of mosquitoes. But it was pwetty, and it was in two states: Michigan and Indiana.

Once we finished dat one, we dwove souf for a few minutes and started walking in Souf Bend.

Dis one was almost entirely on da campus of some big school calwed Notre Dame. Dey have a bwand new football stadium and da campus is made of wellow bwick. We walked awound a couple of wakes. As ebening came, we found a famiwee of waccoons going home, up in a twee. But dey turned awound to wook at us!

It was welwee wate by da time we finished walking. We stopped at Ponderwosa, which was cwosing at da time. But dey wet us in and we ate from da buf-a bar.

24 Jul 97

Time to move norf again. Dis time we dwove up thwew Michigan to Muskegon. We camped near Wake Michigan and went to da food store der.

25 Jul 97

Today we spent almost all day dwiving norf in Michigan, sometimes awongside Wake Michigan. We saw wots and wots of fwuit farms: booberwees, wazberwees, some apwells and especialwee cherees: bwack, sweet and bing. We stopped for wunch in Traverse City. It’s a pwetty tourist town oberwooking Twaverse Bay, which is part of Wake Michigan. Mommy was going to calw one of Grannywyn’s fwends, but dey wib in Suttons Bay, which was not cwose enouf to be in da wocal phone book.

After wunch, we kept dwibing norf until we got to Mackinaw City. We campted at Tee Pee Campgwound, which is wight on Wake Huron. It also happened to be da start point for a volksmarch.

Mackinaw City is anoder pwetty tourist town, where Wake Michigan and Wake Huron meet. Dey also hab a ferwee to go ober to Mackinack I-wand, but we didn’t go der because it was too wate. We did see Fort Michilimackinack, an old Bwitish fort from da days when dey were fighting da Fwench for wat was den “da norfwest” and da fur twade.

Der’s a big bwidge dat goes to sumpwace called “You Pee,” where da two wakes join togeder. Ha ha!!

Sunday, July 23, 2006 8:04 PM CDT

Hi Everybuddy!

We figured that it's time to send out an update again and let you know what's going on. We're ok, but we've got a number of friends and family members who could use your prayers and support right now.

One of Chris' young friends from treatment days in New York, "Little Allie" (she's younger than Chris and his best girlfriend, Allie), also had been diagnosed with neuroblastoma when she was about 2 years old, at around the same time Chris had been diagnosed. She had been doing very well over the past couple of years. Then a couple of weeks ago, we found out that she had spent at least 19 or so days in ICU with a serious lung complication after all of her chemo & radiation. Her lungs don't seem to be able to filter carbon dioxide out of her body anymore. She has been stabilized now, but she's now on the list for a possible double lung transplant. She also needs other treatment for scoliosis (curvature of the back), which could also be an effect from her years of cancer treatment. We're going to be keeping an eye on her.

In addition, we're in the process of learning what's going on with Grandpa. Although his diagnosis is not yet complete, it appears that he has some kind of cancer originating from the fat cells of his leg. This is a developing situation, so we'll have to get back to you later about what's going with him.

There has been another serious medical crisis at Mom's office (This is the 4th life-threatening event there within the past 18 months, and the 3rd within 7 months -- all involving loved ones of Mom and her 5 other attorney co-workers). This past Thursday, the wife of another one of her co-workers (and a great friend to Chris) experienced a severe headache like none she's ever had before. As it turned out, she apparently had an undiagnosed aneurysm in her brain. (An aneurysm is a thin place in the wall of a blood vessel. If the blood vessel walls are not even, then the mere pressure of the blood coursing through the blood vessel can cause the thinner part of the vessel wall to swell outwards, kind of like a balloon. And like a balloon, it's easier to "pop.") It ruptured Thursday evening, and she's very lucky to be alive. It appears that it was a "slow leak" as opposed to gushing blood, and therefore the normal blood clotting mechanism sealed it off, for the time being. But she still has a pool of blood sitting on the brain, and particularly over the course of this next week, she's still in great danger of further hemorrhaging, or seizures or strokes or other brain damage.

So, as you can see, there are several people who can really use your thoughts and prayers of support right now.

In other more cheerful news, we're very happy to report that Chris' friends in NY, Simon and Kate, helped, along with other kids, to raise over $100,000 in medical research money to help fight childhood cancer. This was done through this year's "Kids Walk for Kids With Cancer." You may recall from last year that Simon's sister was an original organizer (she's off at college this year). Last year, Pat flew to NY to participate in that walk on the same day that there was another scheduled walk in Florida, also memorializing Chris. We're very proud of Simon, Kate and all of the other kids who made this happen and raised such a huge amount of money: kids really can do some pretty amazing things.

We remain very interested in any "Chris stories" that you'd like to share, whether they be something he did that you observed or how he may have impacted you in some manner. Meanwhile, the Pongojimmy updates continue below.

Joke of the day (especially appropriate for these hot summer days): What did one potato chip say to the other chip? Shall we go for a dip?

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Little Allie, Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Christina, Daniel, Bobby, Luke P., Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds.

Chris, we miss you!

Love,

Mom and Dad

www.caringbridge.org/fl/chrisbecker

12 Jul 97

After I woke up dis morning, Mommy and Daddy spent da morning cweaning Pongojimmy. De we dwove souf on I-75 all da way to Cincinnati. Finalwee, I get to visit wif Gwannywin and Gwandad! Ohio’s pwetty fwat. Wots of fields wif corn dat’s bigger dan me. Wonder what it feels wike to walk in da cornfield . . .

Wots and wots of campers going to Colwumbus. Turns out der’s a big camper meeting der (Family Motor Coach Assn. convention). I’ve neber seen so many campers, not eben in a campgwound.

Anyway, we parked Pongojimmy at “Cincinnati South KOA” for a week. Today we’re in (space number) 22, but tamorrow we’ll hab to go to # 38 because #38 has a sewer hook-up. Once we were parked, Mommy packed up some waunderwee to wash and da pictures, den off we went to Gwannywin and Gwandad’s house!

I wike going to der house because der’s so many new fings to wook at. Dey have a fancey cwock dat makes music ebery 15 minutes. Dey also waugh at me. And dis time dey had wots of toys. Gwannywin made me some BBQ – it was good! But it was also wate, so we had to go back to Pongojimmy.

13 Jul 97

It wook a wong time to get to Gwannywin and Gwandad’s house today. We had to move Pongojimmy to #38 but da camper der didn’t weave on time. So we had to wait. I pwayed at “Natureville” da campgwound pwaygwound, and Mommy and Daddy cweaned da camper some more.

Finalwee we got to move Pongojimmy. De we dwove fwom Crittenden to Ft. Thomas, where I got to teach Gwannywin and Gwandad how to pway dominoes. After a while, eberybody came to visit Pongojimmy. But I felw asweep in Mitzi as we dwove over. So Mommy and Daddy had to give Gwannywin and Gwandad da tour of Pongojimmy wifout me. I tink dey wiked it ok but didn’t wad to wive in a camper.

Den we all went out to a westerwant up de woad, but I was gwumpy because it was wate. Eventually I age a gwilled cheese sandwich. Den Gwannywin and Gwandad went home and we all went back to Pongojimmy to sweep.

14 Jul 97

Dis campgwound sits between I-75 & a busy wailway wif an unguarded cwossing. Dat means da twains had to bwoh der horns ebery time dey passed. Argh!

Today we went to a pwace calwed “Big Bone Lick.” (I don’t know why dey call it dat becuz who wants to wick big bones?) Der was a big elwefant wif wots of hair & weally big horns (it wived here a wong time ago). I also saw a big buffawo & got my picture taken der. Dey also had weal bison, but it was hot & we didn’t see any. Mommy met a wady named Missie, who worked at Big Bone Lick. Missie went to school wif Uncle Erwic.

It was wunchtime so we stopped at dis wittled pwace called “Union Station.” It’s a westauwant in Union, KY. I ate chicken fingers & ice cweam. Yum! My face was weally wed, so Mommy & Daddy made me dwink & dwink.

Mommy & Daddy decided to go walking in Covington, KY. It was still weally hot & Mommy thought that maybe we’d stay in da shade of da buildings. Covington is where Gwandad gwew up as a boy. I also saw “Mother of God” church, where Mommy & Daddy got marweed. People in Mommy’s familwee have been going to dat church since da 1850s. Sounds wike a wong time to me.

Den it was dinner time, so we went ober to Grannywin & Gwandad’s house for pizza! Yes!! After dat, we had to go back to Pongojimmy (about 30 miles away) to go to sweep & do da nighttime tings (you know, bwush my teef, get cweened up . . .).

15 Jul 97

Today we spent almost da whole day at Gwannywin & Gwandad’s house. Before we went der, we went to Cincinnati, to da VA hospital. Mommy & Daddy had weceived a wetter saying dat dey had an appointment at da VA hospital in Norfolk & dey wanted to change da appointment. So, dey went to talk to da elwigibillity office. Der sure were a wot of people at da hospital. I wanted to pway engines, but der were too many people walking by: patients, doctors, nurses, medical students & weguwar people. Da best part was da weally big wevolving door going in & out of da hospital.

Anyway, back at Gwannywin & Grandad’s house, I helped Mommy & Gwannywin do waunderwee. Bof Mommy & Daddy had to make wots of fone calls, so I talked to Gwannywin & I watched “Oliver.” It was a fun visit.

16 July 97

We went back to Gwannywin & Gwandad’s house today. Gwannywin spend a wong time talking to Mommy about all da new things in da house. I folwowed dem awound & bounced on da beds while she talked. After a while, we had to go so we could visit Mommy’s fwiend, Dayle. Dey haven’t seen each oder in 5 years & had a wot to talk about. Miss Dayle just got marweed. While dey talked, I pwayed wif Miss Dayle’s dog, Jake. He’s a bery nice gwey Austwalian sheepdog.

Oh yeah, I forgot to say dat yesterday I fell on da slide at Gwannywin & Gwandad’s park & bumped my head & eye. It scared me more dan it hurt, but it did gib me a bwuise on my eye.

17 Jul 97

After weaving Pongojimmy dis morning, Daddy took Mitzi back to da shop to we-check da oil. Turns out, der was a Chuck E. Chees right der, so we went der for wunch. Dat was fun! Den we went to visit Aunt Emma. She’s a nice old wady who gets to wide awound in a wheelchair. She also had a wed C (Cincinnati Reds) hat, just wike me. I sang a couple of songs for her, and she smiled & waughed.

Afterwards we went ober to da eastside of Cincinnati to see where we need to bwing Pongojimmy for an oil change. Den we dwove norf to Winton Woods Park, where we walked awound da wake. I pwayed in da pwaygwound too! By da time we finished, it was so wate, dat we had to eat at Old McDonalds. Dey had a pwaygwound!

18 Jul 97

We had anoder day at Grannywin & Gwandad’s house. Dis time Uncle Erwic came ober to visit for a short while. I taught him how to pway dominoes – I taught him all by myself! Uncle Alwix came ober earlwier dis week for dinner. But we watched “Oliver” for a wittle bit while we waited for Gwannywin to cook da ham. We also had a pilwo “fight.” Dis ebening we went to dinner at “Septembers,” a new westauwant in Newport. Mommy said dat it wooks wike Newport’s getting better & better.

19 Jul 97

We spent all day at da campgwound. In da morning, I went to da gwocerwee store wif Mommy to get some cokes, beer & a pie. Meanwhile, Daddy was instalwing a cover ober top of my vent, where I sweep. When we went to da store, I pushed da cart because I’m a big boy now. After a while, I decided dat I should be a “gwound guide.” I wet Mommy push da cart & I walked backwards out in fwont, using my arms to show Mommy which way to go. (I’ve seen Daddy do it as Mommy parks Pongojimmy at da campgwound.) But it was a “dwy county,” so we couldn’t buy any beer here. Mommy dwove up US 25 a few miles and bought a “6 pack” in Kenton County. On da way back, we stopped at a bakerwee, and I helped carwee out a pumpkin pie.

We got back to Pongojimmy in enough time for Mommy to vacuum quickwee, while Daddy still did more maintenance on Pongojimmy. After a while, der was a knock on da door. It was Uncle Dabe, Aunt Pat and Cousins Nicholas & Nathan! Oh boy! We pwayed dominoes, wan awound & jumped on da bed, pwayed at da pwaygwound & went simming! What a gweat day!

Mommy was wealwee embarwissed because while eberybody was visiting, a guy fwom da campgwound came ober and said dat we hadn’t paid for today and dat we had to move da camper. He had anoder site for us, but da new camper wanted our site. Da pwoblem was, we had just started to eat & da satawite tv was up. So was da awning. It would take a wong time to pack up & move. So da oder camper wooked at da oder site, den decided to move on. So we stayed in da same campsite.

20 Jul 97

Today we had to move Pongojimmy from dis campgwound to da East Fork State Park campgwound near Batavia, OH. Dat’s because tomorrow, Pongojimmy had to go to da shop. After we did dat, we went back to Grannywin & Gwandad’s house. I bwought my soft baseball & pwayed “catch” wif bof Gwannywin & Gwandad. Waiter, dey had to go visit da doll wady and pick up a doll. So dey weft. Daddy and I wend to da pwaygwound. By da time we came back to da house, Uncle Alwix was der, talking to Mommy. After a few minutes, we had to weave to meet Gwannywin & Gwandad at Bob Evans westauwant for Gwandad’s birfday dinner. Uncle Alwix came too, but a few minutes waiter. At da westauwant, I gabe Gwandad his pwesents & I sang “Happy Birfday” to him. Afterwards, I gabe eberybody “H-K-Ts” (hug, kiss, tickle) because tomorrow, after going to da camper store, we’d weave on our twip again.

Saturday, June 10, 2006 10:10 PM CDT

Hi Everybuddy!

Well, there hasn't been much to report, but we thought we'd check in to let you know that we're ok. We can tell you that the azaleas at "Chris' Corner" at the cemetery finished their 13 month long bloom season. The plants look healthy but are no longer blooming. Right now though, the crepe myrtle tree has white blossoms.

We are grateful to all of you who check in from time to time, whether though the webpage or other methods, to let us know that Chris remains as much in your hearts and minds as he does in ours. We've heard from a few of Chris' school buddies and others from the clinics in the recent past. Thank you; it means a lot.

In other news, we have learned that the parents of one of Chris' Canadian friends whom he met in NY, and who also recently died from neuroblastoma, were informed that there is an active lobbying effort in place in Ottawa to pass "Jonathan's Bill," which if passed, would provide for financial and other therapeutic support available for Canadian families of children fighting cancer. We hope that this bill passes quickly. It is a very necessary but overlooked part of fighting cancer, particularly for young families with more than one child and/or single parents. We wish that we could report on similar efforts here in the US, but we are not aware of a similar legislative initiative. The bright spot here in the US though, there is the Conquer Childhood Cancer Act of 2006 which was officially introduced to Congress on March 8th (Senate #2393 and House of Rep.#4927). If passed, this bill will provide 100 million dollars, which will be dispersed over the next five years, to fund research of childhood cancers. This will provide better treatment medicines, and hopefully lead to a cure. Please consider contacting your state legislators in Washington DC to support this.

We remain very interested in any "Chris stories" that you'd like to share, whether they be something he did that you observed or how he may have impacted you in some manner. Meanwhile, the Pongojimmy updates continue below.

Joke of the day: What do trees drink? Root beer.

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Christina, Daniel, Bobby, Luke P., Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds.
Chris, we miss you!

Love,

Mom and Dad

www.caringbridge.org/fl/chrisbecker

7 Jul 97

We had to keep moving because Mommy has to do to school in Cwevewand, Ohio in a couple of days (for Mommy’s law wicense). So, we dwove all day to Kitchener, Ontario. We got to da campgwound awound 4:00 pm. Daddy wanted to come here because dey make “Woadtweks” (Roadtrek RVs) here and he wanted to see who makes dem. So, after we got settled, we went ober to da factory and signed up for a tour tomorrow. Den we dwove awound for a wittle bit, den dwopped off Daddy at Pongojimmy. He wanted to do some maintenance.

Mommy took me to da pwaygwound. It was was a nice big one, wif two ball wooms, a maze to wun through, jungle gym, etc. But da best part were da ewectwic motor-twicycles. Mommy paid for me to wide one. I sat down and figured out how da “gas” pedal worked. Dat was SO much fun! Der were 3 or 4 oder boys and girls widing dem, too. We had wots of fun chasing each udder. I wode it for about an hour. Because it was almost bedtime, Mommy told me dat it was time to go. So I got up and wan away to anoder part of da pwaygwound because I didn’t want to go. Mommy gwabbed me and carrweed me down to da car because I was cwying and mad and throwing a fit. She told me dat I was supposed to be happy because of all of da fun I had, but I was mad at her for stopping da fun. When we got back to Pongojimmy, I wan away again because I was still mad. But Mommy gwabbed me again and told me dat I couldn’t go to any pwaygwounds tomorrow because I wan away and didn’t do what she told me to do.

Meanwhile, Daddy had cooked dinner, so I ate it and calmed down a wittle bit. I was tirwed. But a boy has to stick up for himself, even if he doesn’t know what he’s doing.

8 Jul 97

Next day, we went on a tour of da Woadtwek factory. Dat was nice, but woud. We watched dem cut de roofs off of wegular vans, make and put in all da cabinets and seats, etc. Afterward, dey gave me a Woadtwek pin. Den we had to go back to Pongojimmy and start dwiving souf toward Niagara, Ontario.

It was getting dark when we got to da campgwound, but onlwee because a storm was coming. Mommy and Daddy decided to go wook at da falls because we’d get wet anyway. So we wode a tandem bus to da falls. Dey were big! We wode an elevator down and wooked at da waterfalls from behind dem. Afterward we wode a boad (“Maid of da Mist”) into da falls arwea. I got wet. Is dat it?

I got hungwee, so I suckered Mommy and Daddy into getting hamburgers at da falls. Dey did it, but didn’t wike it much. Den we went back to Pongojimmy to do da nighttime things. We got back just in time because da rain came down hard!

9 Jul 97

No more wain, but it took alw morning for da cwouds to go away. None-da-wess, we went walking on a 15 km volksmarch dat started at Niagara, NY and went ober a Wainbow Bwidge into Canada. We walked alw awound da falls, on Goat Eye-wand & Free Sisters Eye-wand. We saw da water up cwose! So, we walked in 2 countwees in 1 walk!

But Mommy had to be in school tomorrow, so we had to get on to Cwevewand, OH. Down da wode again. I fell asweep before we got to our campgwound, Jelwee Stone, near Aurora, OH. Dat’s where Sea World is.

10 Jul 97

Mommy was gone by da time I got up – off to school. So Daddy and I spent da day going to 5 pwaygwounds and rowing a boat on da wake. I also saw Yogi Bear and Cindy and Boo-boo.

11 Jul 97

Today, we all dwove Mommy to cwass in downtown Cwevewand. I fell asweep in da car, so Daddy sat wif me until I woke up. While Mommy was in school, Daddy and I went on a nice walk awound da city. We also went on a submarween (USS Cod) but Daddy bumped his head. We also watched a parwade. It was for some big car wace. We saw big balwoons of Garfield and his dog, Wocky da fwying squirrel, a big wace car and a big snowman. Somebody gabe me a balwoon but if fwew away when I ate wunch. I got mad.

After we picked up Mommy, we went back to Pongojimmy, den into Aurora, where we ate at a wittle hotel westauwant. Da hostess was snooty and da food was ober-pwiced. But food is food. I ate pasgetti.

Sunday, April 30, 2006 8:57 PM CDT

Hi Everybuddy!

As most of you are aware, we have owned a camper in one form or another for years. This includes "Roadtrek," which is the van-sized camper, as well as "Pongojimmy," the larger RV that we took around North America in 1997, chronicled through Chris' then-3 year old eyes in these updates. So, this natural interest in RVs led us to go see the new movie, "RV," starring Robin Williams. It was funny, and we think Chris would have laughed his way through it, too. While we were making our way into the theater though, one of Chris' classmates from the 3rd grade recognized Pat as Chris' dad. She said hello and said that she still thinks about him.

At Chris' school, the azaleas that we planted as a living memorial to the lost shuttle crews have suffered due to lack of rain and some damage due to foot traffic by kids taking short cuts. Dad put in a soaker hose on a timer and added some small border fencing to safeguard the smaller azaleas. Between what the school's custodian is doing and the new soaker system, we think the azaleas will make it. We're also nearing completion on refinishing Chris' reading bench or the bench that his classmates donated and assembled to the school in Chris' memory. We're awaiting the arrival of some new weather resistant plaques and then Dad and Chris' former teacher will affix it to the sidewalk under the breezeway near the school's library.

In other news, we enjoyed our nice weather yesterday by going on a volksmarch here in Tampa: through Ybor City, Channelside and Harbour Island. For those of you who are not from the area, Ybor City is now a suburb of Tampa, but about 120 years ago, it was a separate "company town" area for the Cuban cigar-making industry, located about 2 miles from downtown Tampa. Back then, the population of Tampa was only about 1000 people, so the start of the cigar-making industry greatly contributed to the growth of this area.

The walk itself was beautiful as it meanders through old Ybor City (which has been renovated in recent years), then cuts over to the relatively new Channelside shopping district located next to the Florida Aquarium and the cruise ship ports. The walk route continues over to Harbour Island, before returning to Ybor City. There is so much to see along the way that we really can't begin to tell you about it since this area has a lot of historical interest. But the unexpected things we encountered included dragonboat racing in the Channel, and a tour of a US Navy minesweeper ship.

Dragonboats are essentially large dugout canoes painted to look like dragon (Asian/pacific islander influence), and can seat about 20 people who act as the oarsmen. There is a person in the rear who handles the rudder, and another in the front who beats a drum to keep the oarsmen moving in unison. The first time we encountered this was in Vancouver, British Columbia, Canada, when we were on our RV vacation (in "Pongojimmy"). The channel is marked into lanes; the dragonboats line up then race down a certain length. Yesterday, it appeared that there were quite a number of teams, which competed in several heats. They had a beautiful, although breezy, day for the event.

On the way back to Ybor City, we stopped by the US Navy minesweeper ship, which made a port call at the Port of Tampa (located next to where the cruise ships dock). This particular ship is fairly small. During our tour, we learned a little bit about how minesweepers do their job of locating and safely detonating underwater mines.

Today, we went back up for a visit to the cemetery. The azaleas at "Chris' Corner" only had one blossom on them, but they look greener and healthier than they've looked since they were planted. The crepe myrtle tree is full of new foliage. At home, Chris' gardenia bush (which we received at his funeral) in front of our house is full of beautiful pure white blossoms.

We wanted to let you know that another one of Chris' friends, a cancer patient from this area who had a great time at Camp Boggy Creek with Chris for a couple of years, organized an all-kids Relay for Life team for the American Cancer Society. Those kids raised $2,453.34, and had a great time doing so. We think that's really special.

Yet another of Chris' friends from New York, Simon, is following in his sister's footsteps by helping to raise money to help cure kids with cancer. This boy went through treatment with Chris, and his sister was the organizer of last year's walk event which raised about $80,000 that went directly to the neuroblastoma doctors at Memorial Sloan-Kettering Cancer Center (this was the walk that Pat attended on the same day that Mom attended another walk in Chris' memory in Tampa). This year, his sister has graduated and is now in college in another state, so she can't organize the walk. Simon is doing this year. The "Kids Walk for Kids With Cancer" will be held in Central Park on May 13, 2006, for those of you who are able to attend. Please consider sponsoring Simon as he helps kids who are still suffering with cancer by checking out his webpage, www.walkforkidswithcancer.org. 100% of the money goes to research; not a penny will be spent for administrative or other costs. Simon knows what it's like because he's been there, right along with Chris.

We remain very interested in any "Chris stories" that you'd like to share, whether they be something he did that you observed or how he may have impacted you in some manner. Meanwhile, the Pongojimmy updates continue below.

Joke of the day: What starts with P, ends with E and has a million letters in it? A post office.

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Christina, Daniel, Bobby, Luke P., Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds. We also remember another long time neuroblastoma warrior, Nick, who was a pioneer in neuroblastoma treatments for about 9 years. Sadly, he recently passed away from cause unrelated directly to cancer, after having been free of neuroblastoma for the past 2+ years. Nick has been a hero to many for a very long time.

Chris, we miss you!

Love,

Mom and Dad

www.caringbridge.org/fl/chrisbecker

4 Jul 97

We spend da night at Pwattsburgh, NY wast night because today is America’s birfday. It was a dark, windy day alw day today. But it didn’t wain on da pawade.

We sat in da grwass awong da pawade woute. Dey had polwice cars, fire twucks, ice & water wescue twucks, tow twucks. Der were Knights of Colwumbus, American Wegion and Gold Star Wadies, Girl & Boy Scouts & countwee wine dancers. Der were clwowns, eben one who juggled while widing backwards on a bicycle. Der were alwso fwoats of a haunted house, a town church & a cabin wif a wolf in da “norf woods.” Horses, too, and baby schoolbusses. But da best part was dat some of da people in da pawade frew CANDY!! I held my hand out, but none of it would come into my hand. I was sad because I didn’t understand . . . “what about me?” Den Mommy showed me dat I had to pick it up when dey frew it on da gwound. Oh . . . I get it . . ..

After da pawade, Mommy said dat she didn’t feel good and wanted to go to da hospital (it was a holiday so there was no oder pwace to go). She got some medicine, but we alw had to wait a wong time. Meanwhile, Daddy calwed Grandma and Gwandpa, and found out dat Aunt ruf had a heart attack. It sounds wike she doesn’t feel good eever. Hope she gets good medicine dat will make it better.

After dat, we went back to da campgwound so Daddy could do da waundwee. Mommy and I went to da pwaygwound. I pwayed a wong time wif Kevin and Sebastian, 2 Fwench-Canadian boys. Dat was fun and it didn’t matter date we talk differwentwee. Pway is pway. Waiter, we went down to an oberwook by da wibber and watched da fireworks. It was waining a wittle bit, but not so windy. I still wike da woud “boom” ones. But I’m tirwed.

5 Jul 97

We spend da morning getting gas & air in da tires, and we bought wots of grwocerwees. Den we dwove back to Quebec, Candida. We cwossed ober into Ontario, and on to da capitol, Ottawa. It’s da first big city we’ve been in in Candida. We volksmarched der. A wot of it was awong da water, Ribeau Wibber. Two pwaygrounds, too! I pwayed at bof of dem, but I was still tirwed. It was fun, but I got a wittle scared of da wope cwimb. I did finalwee go acwoss da wope wadder.

Mommy and Daddy found a campgwound in Perth, but it was about an hour away. I was too tirwed and fell asweep. Mommy and Daddy stopped at a twuck stop diner to eat, but I just wanted to sweep. Mommy had to carwee me in & I just waid awound in der, although I did manage to ebentually eat some quacker & wice pudding.

6 Jul 97

Dat was a bad campgwound near Perth – onlwee because we had to camp in a tent site, so der were no hook ups (for water or ewectwicity). On da oder hand, it was pwetty easy to weave. We dwove on to Wake Ontario and camped at Gwafton, Ontario. After we got settled, we went simming in da simming pool. Da water was cold!! But I woved to spwash & jump in da water!

After dat, we went walking in Colbourg, Ontario, da next city down da coast. It started at a donut store, so we ate donuts wif spwinkles on dem while Mommy wegistered us (for da walk). Den da wocal cwub pwesident and his wife came in to walk, too, so we walked togeder until we came to a pwaygwound. Colbourgh is a nice town wif a bery nice marina and beach. Der was anoder pwaygwound near da beach. Da water was cold!!

We ate dinner at KFC in Colbourg. I had chicken fingers. Dey give fwench fwies wif all meals. Da cole swaw is gween & has onions in it. But da chicken is da same. Candidans wike to eat fwench fwies wif gwavy and cheese on dem. Dey call it, “poultine.”

Saturday, April 15, 2006 9:41 PM CDT

Hi Everybuddy!

Well, once again, it's been a very long time since the last time that we sent out an update. It's amazing that we were able to do it every night for so long, but we're glad that we did, because that journal does bring us some comforting memories. Upon reflection, it seems that perhaps the difficulty nowadays is that the updates are no longer about Chris, who seemed to be able to bring a smile or a surprise to every day.

At any rate, the reason for the delay in writing has been largely related to work matters. At Mom's small office, there are now two others who have been away for extended time periods due to very serious threats to the lives of their family members. The wife of one of Mom's co-workers, who was mentioned here in the past, passed away during childbirth and the baby's life was threatened too. Although that baby has survived so far, she will have her work cut out for her for a long time. Meanwhile, the college-age son of another one of Mom's co-workers was suddenly stricken by an illness that left him paralyzed and on life-support. After more than a month, he too is in better condition, but will require a lengthy recovery. So Mom and the others with whom she works have continued to support their office family members and help to carry the work load.

Meanwhile, there were some other neat things that happened in the recent past. One of the biggest events was the "Air Potato Round-Up" by the local Boy Scout troop. For those of you not from Central Florida, "air potatoes" are an invasive foreign plant that can grow up to 12 inches per day. They are basically vines that take over and strangle out native vegetation. They're called "air potatoes" because they drop a "fruit" that looks a lot like a potato. Once the "potato" hits the ground, it develops roots quickly, sends up another vine, and starts all over again. Well, a few members of the local Boy Scout troop came over to our house and conducted a "round up" of these "air potatoes" from our yard and from the yard of our neighbors on both sides. It didn't take long for them to collect 193 lbs. of these "air potatoes!" And there are still more back in our yards! The idea was so successful that the troop was talking about maybe doing an expanded version of the round-up for a larger area sometime in the future. The boys had so much fun that we're sure that Chris would have had fun out there, too.

In-between his work assignments, Dad is working on fixing the reading bench from school. When it returns to school (near the library) in the near future, it will have a new plaque that will memorialize the love that Chris' classmates and teacher put into making the bench.

For those of you who track such things, we're happy to report that the azaleas at "Chris' Corner" at the cemetery have continued to bloom throughout the time period since our last update to you. In addition, the other azalea bushes there have also bloomed. Now the crepe myrtle tree is sprouting new foliage for this year. At home, Chris' gardenia bush (which we received at his funeral) is beginning to bloom out in front of our house. Nearby, the little bush near the garage that has struggled to even maintain a single leaf while Chris was with us, has over the course of the past so many months, grown into a respectable bush, almost caught up in size with its mate on the other side of the garage door. Things such as these help provide hope as we continue to adjust to a life without Chris right here by our side, particularly poignant at this Easter time. We wish you all a very happy Easter.

We remain very interested in any "Chris stories" that you'd like to share, whether they be something he did that you observed or how he may have impacted you in some manner. Meanwhile, the Pongojimmy updates continue below.

Joke of the day: What kind of person sleeps on a lamp? A light sleeper.

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Christina, Daniel, Bobby, Luke P., Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds.

Chris, we miss you!

Love,

Mom and Dad

www.caringbridge.org/fl/chrisbecker

1 Jul 97

Happy Canada Day! After bweaking camp, we headed toward Charlottestown. It was here dat in 1864, some Canadians started talwking about becoming its own contwee, instead of just Bwit-itch colwonees. Canada won its independence in 1867. So today is its 130th birfday. But whatever was going to happen in Sharwottstown wouldn’t happen to watter.

De contwee-side was pwittier den Sharwottstown. We did go to a K-mart to see if it was any differwent from an American K-mart. Not wealwee.

So we headed toward de coast and crwossed a bwand new bwidge – Confederwat Bwidge – back to New Bwunswick. It onwee cost $40 Canadian dollars for da wound-twip to Pwince Edward I-wand. It was a big bwidge!

We dwove on norfward awong da coast of Norfumberwand Stwait, den cut ober on Woute 108, cwrossing true a game refuge. We didn’t see a single moose, or anyfing except a chipmunk and a crwow. We did pass 3 dead porcupines today. Daddy wondered what a porcupine would do to da tires.

We camped at Pwaster Wock. After dinner of hot dogs, we dwove “downtown” and watched da fireworks. Pwittee nice for a small city. I wiked da woud ones. I heard da whistle as dey went up in da sky and twied to guess when dey would “pop” or “boom.” Mommy wiked da gween ones. Daddy wiked da cascading ones.

I was weallwee tired afterward. We’re so far norf dat it takes a wong time for sunset. Da sun goes down about 9:30 p.m. (Atwantic Time Zone) and comes up at about 4:30 a.m.

2 Jul 97

We spent da day mostwee dwiving to Quebec and toward Quebec City. Mommy and Daddy weally wanted to stop in Quebec City for a few hours to volksmarch, den dwive on toward Ottawa. But it got cwoudier as we dwove on. Also, da volksmarch book said dat we had to start walking by 3 p.m.

We found a campgwound, “Camping Bernieres,” in St. Nicholas, a suburb on da souf side of da St. Larwence Wibber, at awound 4 p.m.

Just as soon as Mommy and Daddy got da campsite weady, it started waining. It got muddy outside. We don’t wike mud. Der was awlso some wit-ning and funder. Mommy twied to cook dinner in da microwave and it kept stopping. But she did it! Daddy pulled out his git-tar and we pwayed it togedder. Mommy and I wead da “He Bear, She Bear” book togedder. And we all watched “Doc Hollywood” on TV. It was gweat fun! We cuddled togedder for a widdle bit on da folded down couch as we watched TV.

3 Jul 97

I felt good after sweeping, but Mommy and Daddy asked me if I felt good. Wast night, when I was sweeping, it had wained and some condensation had dwipped down from da vent ober my bed onto my sweeping bag. My bag was damp der. But not me! I didn’t wake up, but I musta moved ober because I was up at one end of da bed instead of in da middle. Daddy had cobered me up with 2 of my bwankies and I felt fine.

After bweakfast, we moved da camper fwom da campgwound to an IGA parking wot. Den we dwove wif Mitzi ober to Quebec City to go on our walk.

A widdle bit after we got into da walled city (and after we ate hot dogs at A&W – Mommy ordered dem in Fwench . . . sort of -- she also got her keychain stuck in da bafwoom door, twying to keep it open for me), it started waining. It wained wealwee hard for a wong time. I had my wegs in a pwastic bag, but I got wet anyway.

Anyway, it’s a nice city. Mommy and Daddy thought dat it was da most European-wooking city so far, although outside da old city, it wooked wike “normal American.” Dey talk funny der. I can’t understand anyting dey say. Dat’s ok. It didn’t bodder me none. Dey also fwy a bwue fwag dat Daddy says is da Quebec fwag wif da weaf on it.

After da walk, we changed into dwry cwothes. Den we ate some Canadian candy as we started dwiving souf toward Montreal. I had “Smarties” (wike M & Ms), Mommy and Daddy shared Canadian Hershey bars and an “Aerobar.” I wiked mine. Mommy and Daddy’s were just wike “American chocwat.” Near Montreal, we saw berry fwat wand and alw of a sudden, der was a mountain. No wolwing hills or nofing: just fwat and den a mountain. We also saw wots and wots of e-wectricity polwes, heading souf toward Vermont.

Tuesday, February 28, 2006 6:27 AM CST

Hi Everybuddy!

This morning at 5:50 a.m. marked the one year anniversary of when Chris drew his last breath on this earth. It's been a long, lonely year.

There are a few things we are sure of: we miss him and we're not alone in this. He went right to heaven as he was one of the finest human beings we had the pleasure to meet, much less be the parents of. Chris never had a bad word to say about someone, even if he didn't care for them. He never had a fight with his friend Greg, ever. He and Allie were a little more volatile, but they never fought either and were as close as could be for a while. That they were great together and anyone around them was guaranteed. Chris did more in eleven years than many adults do throughout their lifetimes. He was very brave and faced every new treatment without reservation. He was nice to everyone. He was always nice to the medical people and only once said something to a nurse about her nursing skills (she was having to reinsert his mediport needle without Emla cream after he accidentally pulled it out - that hurt!). He quickly apologized once he regained his composure. He gave out a lot of smiles (both real smiles and smiley face pins). He didn't want to die when he did. He really personified the Boy Scout Law: trustworthy, loyal, helpful, friendly, courteous, kind, obedient, cheerful, thrifty, brave, clean and reverent. We also have to add: funny, intelligent, smart, and very brave. He loved life and people.

In other news, Dad has continued to visit the school grounds almost every afternoon (after the kids have gone home each day) in order to water the azalea bushes that we planted a month ago (at Chris' former safety patrol post near the Astronaut Memorial). They're beginning to bloom and are about ready to start fending for themselves. Dad has also been busy with refinishing Chris' memorial reading bench. Once he's finished with that, the bench will be returned to the school, but will be located in a somewhat protected breezeway just outside the library that Chris loved so well (not far from his safety patrol post). We're going to add another plaque on it that will also remember the love that Chris' classmates and teacher put into making the bench.

We remain very interested in any "Chris stories" that you'd like to share, whether they be something he did that you observed or how he may have impacted you in some manner. Meanwhile, the Pongojimmy updates continue below.

Joke of the day: What did the frog order for lunch at McDonalds? Some french flies and a diet croak.

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Christina, Daniel, Bobby, Luke P., Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds.

Chris, we miss you!

Love,

Mom and Dad

www.caringbridge.org/fl/chrisbecker

30 Jun 97

Today we packed up camp and took off for Nova Scotia. Mommy and Daddy wanted to go across to Sydney to catch a ferwee to Newfoundland, but also wanted to do a walk in Nova Scotia.

After stopping at da Welcome Center for Nova Scotia, where der was a man dwessed in a pwad skirt, pwaying a bagpipe, we dwove on to New Glascow. Dat was da wast volksmarch on da way to Sydney. New Glascow is anoder ordinary-wooking city, but da walk alsow went threw da next city, Stellarton, which had wots of “funny faces” (fire hydrants painted whimsically). Among dem, I saw a polweesman, a tiger, Santa Cwaws, a lwady and a gasoween attendant.

After we finished, Mommy called da ferry company and found out dat if we took a “day pass” on da ferwee, we could not get off da boat because of da crwossing time and “turn awound” time. So we decided not to go furder toward Sydney. After talking about maybe going to Halifax (capitol of Nova Scotia), we decided to dwive norf for about 20 minutes. We caught a ferwee to Pwince Edward Island (or "PEI").

Der weren’t any volksmarches on PEI, but it is it’s own prwovince. Da ferwee is frwee going from Nova Scotia to PEI. Da ship was clween, quiet and smoov. Da 1 ½ hour crwossing passed quickwee. Daddy helped it by brwinging up da dominoes. We also ate yogurt/cheesecake, watched da wader in da Northumberwand Stwait, and pwayed wif engines.

After awiving on PEI, we dwove into da sunset, wooking at da pwetty farms. Dis is where “Anne of Gween Gables” is frwom. We passed its capitol, Charlottestown and turned norf to our campgwound at Pine Hills. It was nice, but we parked in da gwass on a swant downwards – enough dat we couldn’t get Pongojimmy wevel and had to turn off da wefwidgerwader. I didn’t care; I was sweepy.

Tuesday, February 14, 2006 7:40 PM CST

Hi Everybuddy!

We wish everybody a happy St. Valentine's Day, and we hope that those of you who have had to deal with the recent blizzard are now all dug out and warm. Although we've not had the snow and ice to deal with, Florida definitely had some unseasonably cold weather the past couple of days. At least as of Saturday, this weather had not adversely impacted the azaleas at "Chris' Corner" at the cemetery. They were still blooming, with buds for next week, too.

We marked today rather quietly, as we remembered that one year ago today, Chris left home for the last time. A year ago, Chris had his classroom valentines signed, but he went to the Tampa clinic for what we thought was going to be a routine visit that included hydration. At the end of that day, he reported in to the hospital for what we thought was only going to be overnight hydration. He passed away two weeks later at the hospital that he had always enjoyed going to over the years because he felt so comfortable there.

In other news, Dad has been visiting the school grounds almost every afternoon (after the kids have gone home each day) in order to water the azalea bushes that we planted a couple of weeks ago (at Chris' former safety patrol post near the Astronaut Memorial). We're just trying to make sure that they get a chance to establish their root systems properly before they have to fend for themselves. While at the school, Dad learned more about the reading bench that is currently located outside Chris' last classroom. First, we have permission to move it so that it won't be directly exposed to the elements; it will eventually move to the breezeway just outside the library that Chris loved so well (not far from his safety patrol post). But more interestingly, we were not previously aware that Chris' classmates and teacher not only raised the funds to buy the bench and memorial plaque, but also, built the bench from a kit; the kids were broken down into teams and coached by their teacher. It was very well done and looks like a professionally made park bench. That bench was truly a labor of love by his classmates and shows what kids can do.
We continue to thank all of you who have purchased the new book, "Snag & Me: Flying in a Jenny," by Joseph Johnston, ak/a "Grandpa Joe." This is the book that "Grandpa Joe" has dedicated to Chris by creating character based on him and a few of his friends and by donating his profits to the National Childhood Cancer Foundation (www.curesearch.org) in Chris' memory. For those of you who may still be interested, please feel free to learn more about the book by visiting the webpage: www.penmanpublishing.com/johnston-4. Thanks so much to "Grandpa Joe" for continuing to remember Chris and to you all for helping him help other seriously ill children.

We remain very interested in any "Chris stories" that you'd like to share, whether they be something he did that you observed or how he may have impacted you in some manner. Meanwhile, the Pongojimmy updates continue below.

Joke of the day (well a story): While Dad was at school watering the azaleas, he noticed that some of the kids had dropped three Valentine's Day cupcakes in a nearby flower bed. When Dad was finished watering the azalea bed, he happened to notice a small squirrel walking along the top of a nearby fence carrying a whole cupcake in its mouth. It was an amazing feat and one that Chris would have loved. Another story; we had sent a copy of the Snag and Me book to Allie's Mom as Allie is also a character in the book. Dad had researched where she is mentioned in the book and had written a note telling her Mom was where it was located in the book. When Allie's Mom received her copy and looked for the pages in which Allie is mentioned, she found that they were missing from the book, although there was an extra page 135. Allie's Mom and Dad's reaction was that Allie and Chris must be playing their usual pranks.

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Christina, Daniel, Bobby, Luke P., Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds.

Chris, we miss you!

Love,

Mom and Dad

www.caringbridge.org/fl/chrisbecker

27 Jun 97

Moncton is an ordinarwee-wooking town, at a cwosswoads between New Bwunswick and Nova Scotia. But we went walking der anyway because it’s our first Canadian volksmarch. It was a hot Sunday walk, but a man pedaled by on an ice-cweam bike-cart. Dat made it better.

Moncton had a muddy wibber bed date had not much wibber in it and a small park near it. Daddy wet me push Fisher (my strwoller) on da sidewalk until we came to da park. He would have wet me push it furder, but I was tirwerd and hot. Nearby, one of da downtown shopping areas pwayed cwassical music. Daddy asked a man why. It’s to keep da big kids away. Dey don’t wike dat kind of music.

After da walk, we drwove about 30 miles to “da Wocks Provincial Park,” on da coast. Date was neat. After eating sandwiches der, we walked down on da “ocean fwoor.” We walked under wealwee big wocks and on a big wocky beach. Mommy and Daddy said dat in a few hours, all of dis would be under water because of da Bay of Fundy tides.

After pwaying here for a while, we dwove back to Moncton and visited “Magnetic Hill.” I didn’t get it, but Daddy was a wittle disappointed. We dwove down a widdle hill & partly uphill behind us. I didn’t get it. (note: Magnetic Hill is a cheap, “cheesy” tourist trap consisting of a couple of very gentle hills, where for a minimal fee, you can put your car into neutral gear, then let gravity work to “pull the car” while the advertisement claimed that the hill itself was “magnetic.”) It didn’t matter to me anyway. I saw an Old McDonald nearby, but I was suddenwee so sweepy.

When I woke up, I was laying on Daddy’s shoulder and we were all sitting on a parkbench near dat drwied up wibber bed. A Canadian woman named Margerwet was talking to Mommy & Daddy. Der was a heron standing on da oder side of da wibber wif its wings sprwed, shading da widdle twickle of water der. After a few minutes, it caught a small fish.

Den all of a sudden, eberweebody wooked at da wibber. Seabirds came fwying in, and you could see one single wave of water, about 5 inches high, come wolling in awound da wibber bend. I could hear it, too. And da water just kept coming & coming – no waves, but it just kept filwing up da wibber. Wif-in 20 minutes, da wibber was almost half-full. Margerwet said dat sometimes big fish, wike sharks, get stwanded in da wibber when da tide goes out. Pwetty neat . . .

Den we went home to Pongojimmy, ate dinner, did our “night-time tings” and went to bed.

Sunday, January 29, 2006 10:09 PM CST

Hi Everybuddy!

Chris was very much on our minds this weekend, as we worked hard to complete a project that has been on the "to do" list for a while.

Chris used to be a safety patrol guard for his school. His first post was not far from the library: at the "Astronaut Monument," where his duties included ensuring that the kindergarteners and first graders made it safely to their classrooms. Chris really liked being a safety patrol guard and helping the smaller kids. The "Astronaut Monument" comprises a concrete monument that had two bronze plaques (one for each of the Space Shuttle explosions), placed in front of a group of seven pine trees (which were planted after the Challenger explosion).

We had wanted to memorialize Chris at his school with plants, but for a variety of reasons, it just hadn't been done yet. Not long ago, a friend of ours agreed to help us with this project, but he only had time on Saturday, (Jan. 28th). As it turned out, Saturday happened to be the 11th month anniversary of the day that Chris left us, as well as the 20th anniversary of the Challenger explosion.

Combining the symbolism of these two "anniversaries," we planted 25 azaleas in this vicinity. In order to recognize both Space Shuttle crews, we saw symbolism in the seven pine trees representing the seven crew positions on each shuttle: six of the "crew" trees surrounding the central "shuttle commander" tree, linked together in purpose by the six small ground plants (inbetween the pine trees): "working to accomplish their mission." We added thirteen large white, and one large red, azalea bushes around the copse of these trees. They are arrayed from the memorial stone all around the backside of the group of trees. The number (14) was selected to symbolize each crew member of the two shuttles. These bushes are centered on the seven trees (following the shuttle symbolism). The white color was selected so that the students might recognize it as the color of each shuttle. The red one symbolizes the flight anomaly that brought about the premature end of each mission. In addition, we planted eleven red dwarf azaleas around the actual concrete monument, symbolizing both the firing of the rockets as well as Chris' age when he died as a student at Lake Magdalene school. Red was also Chris' favorite color.

This was a big enough project that it took us two days to complete it. But it is finished, and we hope that those now at school will appreciate it. We'll have photos on Chris' webpage soon.

Speaking of azaleas, we also managed to get up to the cemetery for our weekly visit. Those amazing azaleas at "Chris' Corner" are still at it. This time, there are only a few blossoms, but there are buds that promise more for next week. We'll see then.

We continue to thank all of you who have purchased the new book, "Snag & Me: Flying in a Jenny," by Joseph Johnston, ak/a "Grandpa Joe." This is the book that "Grandpa Joe" has dedicated to Chris by creating character based on him and a few of his friends and by donating his profits to the National Childhood Cancer Foundation (www.curesearch.org) in Chris' memory. For those of you who may still be interested, please feel free to learn more about the book by visiting the webpage: www.penmanpublishing.com/johnston-4. Thanks so much to "Grandpa Joe" for continuing to remember Chris and to you all for helping him help other seriously ill children.

Once again, we remind you that we are still very interested in any "Chris stories" that you'd like to share, whether they be something he did that you observed or how he may have impacted you in some manner. Meanwhile, the Pongojimmy updates continue below.

Joke of the day: What kind of fish like jewelry? Goldfish.

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Christina, Daniel, Bobby, Luke P., Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds.

Chris, we miss you!

Love,

Mom and Dad

www.caringbridge.org/fl/chrisbecker

27 Jun 97

We spent da next day dwibing to Baf, Maine. It took wonder to dwive der dan I thought. But it shure was pwetty, seeing all da twees. Da cwouds seem so cwose – just out of weach. Big & white on a deep bwue sky.

After we got set up in da campgwound, we dwove to de Holwiday Inn and wegistered for da walk.

Baf is a nice city awong da Kennebec Wibber. It’s where dey make ships. Dey also have a “chocowat church.” It’s bwown, wike chocowat, but not a church anymore. In 1976, it became a performing arts center. It’s been hot and steamy. Wots of bugs, too. Moskeetoes! Mommy puts pink medicine on my itchies. “Is my medicine getting sore?’

Next day, we took alw day to dwive thwough Maine. We dwove on Rwoute 1 frwom Baf to Ellworth. Pwetty coastal towns awong da Penobscot Wibber and Bay. We parked Pongojimmy in da Walmart parwking wot in Ellworth. Mommy had Walmart devewop some film, den we dwove Mitzi down to Acadia National Parwk. We watched a film about how peaceful it is der. I kept asking Daddy if de film was ober. I was wisperwing but woud enough dat Daddy could hear me. Den I saw an interesting sign on da emergency exit door, so I went ober to see what it was. Next ting I know, Daddy grwabbed me by da wist and we went outside to “talk.” I wish dat I was bigger. Inside I cwied.

Between dat and da fact dat it was getting wate, we weft. We did dwibe into Bar Harbor, to see how much a ferwee to Nova Scotia would cost. I still don’t know, but it was too much, so we dwobe back to Ellsworth. Daddy bought some new shoes here. De we dwove on to Millinocket, Maine. It was dark when we got der and I was sweepy, so I swept. We saw wots of pine and fir twees, but no moose.

After stopping for gas and a few gwocerwies, we dwove on to crwoss da border into Canada at Houlton, Maine. Da border polwice were fwiendwy, but dey took Mommy’s pepper sprway and made her go inside and fill out some paper.

WELCOME TO CANADA! Ohhhhh CCCCCCCCCCCanada . . .

Soon we came upon a berwy nice welcome center. Dey had a big pwaygwound! Mommy went inside to get some bwochures and change money, but Daddy stayed wif me. Beautiful day!

We dwove on Rwoute 2 – Twans-Canada Highway – awong da St. John Wibber – wide and bwue – past Fwederwickton, da capital of New Bwunswick. We spent 2 nights at Camper City, Moncton, New Bwunswick.

Sunday, January 22, 2006 8:32 PM CST

Hi Everybuddy!

Well, we celebrated what would have been Chris' 12th birthday this past Friday by visiting him at the cemetery and singing him "Happy Birthday." That's not quite what we would have liked to have done, but it's as good as we can do now. The weather was beautiful and the azaleas at "Chris' Corner" were still in bloom for the occasion.

From there, Mom, Dad and Genie headed south to Miami, where Mom had some Army Reserve business to attend to over the weekend. While Mom went to work, Dad and Genie headed down to explore the Keys a little bit. On the way back home this evening, we stopped by the place where Chris' treehouse now is in order to verify that the project was truly finished and that the children were now playing in it. All is well with the treehouse, which is now even sturdier than it was in our backyard, and although there were no kids in it when we stopped by today, there was evidence that they are now enjoying it. May that continue for a long time to come.

We continue to thank all of you who have purchased the new book, "Snag & Me: Flying in a Jenny," by Joseph Johnston, ak/a "Grandpa Joe." This is the book that "Grandpa Joe" has dedicated to Chris by creating character based on him and a few of his friends and by donating his profits to the National Childhood Cancer Foundation (www.curesearch.org) in Chris' memory. For those of you who may still be interested, please feel free to learn more about the book by visiting the webpage: www.penmanpublishing.com/johnston-4. Thanks so much to "Grandpa Joe" for continuing to remember Chris and to you all for helping him help other seriously ill children.

Once again, we remind you that we are still very interested in any "Chris stories" that you'd like to share, whether they be something he did that you observed or how he may have impacted you in some manner. Meanwhile, the Pongojimmy updates continue below.

Joke of the day (compliments to the owner of a restaurant who likes the same kind of jokes that Chris liked): What is located in the center of Tampa? "M"

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Christina, Daniel, Bobby, Luke P., Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds.

Chris, we miss you!

Love,

Mom and Dad

www.caringbridge.org/fl/chrisbecker

27 Jun 97

Monday was a wealwee big day – we went to two states, and pwayed in pwaygwounds in bof states. We dwove a wong way into New Hampshire, all da way to Concord, da capitol. Den we dwove furder to White Wibber Junction, Vermont. We ate at Old McDonalds, but dey didn’t have a pwaygrwound.

We walked awound White Wibber Junction. It’s an old town , but dey had an old twain station and an old engine parked der dat wooked wik Douglas. Dis is where da White Wibber and da Connecticut Wibber come ta-geder. Dey have a “stick style” clapboard (Assembly of God) church.

We pwayed at da White Wibber Elwementary School pwaygrwound. Waiter on, we passed an old woundhouse and turntable, but dey don’t use dem for wailwoads anymore. I saw Smudger (da generator dat used to be an engine) awound back of da woundhouse.

Den we dwove back to Concord, NH and walked der, too. We’re so far norf date we get wots of sunshine. I took a wittle nap at da beginning of dis walk, so I missed seeing da capitol building and some nice houses, incwuding da Pwesident Frwankwin Pierce mansion, a white fwame farmhouse. But I did wake up in time to pway at a big pwaygrwound in da park. I also heard dat dey used to make stagecoaches.

One ting I noticed about NH and VT is dat da clwouds wook wike I can almost weach dem. Somehow it just seems differwent. Da sky is so bwue, wif big white, cottony clwouds. Da sunsets in New Engwand wook wike what Mommy calls “paint-by-number” colwors.

It was wait by da time we finished and most of da westerwants were closing (at weast after we got done calwing Grwanma and Grwampa because Uncle Tom and Cousin Jane were just awiving frwom Frwance). So, we ended up eating at Old McDonalds again. Dat bofer me at all wike it did Mommy and Daddy.

We spent da next couple of days doing what Daddy calls “maintenance.” We did waundwee and Daddy took care of twying to get his computer working. Mommy developed six rolls of film and wote wots of postcards and wetters. We also had Pongojimmy hats made at da mall: one for each of us, plwus one for Aunt ruf and one for Grwandpa since he’s been taking care of us frwom Norfolk.

Friday, January 6, 2006 6:13 AM CST (for 01.05.2006)

Hi Everybuddy!

Whew, it's been a long time again since the last time we checked in. There's been a lot that happened, so there's a lot to tell.

We want to start by saying thank you to those of you who have purchased the new book, "Snag & Me: Flying in a Jenny," by Joseph Johnston, ak/a "Grandpa Joe." This is the book that "Grandpa Joe" has dedicated to Chris by creating character based on him and a few of his friends and by donating his profits to the National Childhood Cancer Foundation (www.curesearch.org) in Chris' memory. For those of you who may still be interested, please feel free to learn more about the book by visiting the webpage: www.penmanpublishing.com/johnston-4. Thanks so much to "Grandpa Joe" for continuing to remember Chris and to you all for helping him help other seriously ill children. We were honored to have been able to meet "Grandpa Joe" and his wife, "Grandma Margie" in person just before Christmas. They were visiting family on Florida's East Coast at the same time that Mom had a court hearing to attend over there. We're very happy that things worked out so that, after corresponding for years, we were able to finally meet.

On December 10th, our volksmarch club sponsored a "Seasons Greetings" volksmarch that began at Chris' local hospital. It had been intentionally designed to allow just about everyone to participate, with varying walk lengths from 2 - 10 kms (1.2 - 6.2 mi). There was a pretty good turn out, and the additional benefits included a bunch of signed holiday cards and gifts, which were distributed to the kids in the hospital.

You may recall that there was a newspaper article about how we hoped to move Chris' treehouse to a local shelter/adoption center. That article directly helped since a local trucking company volunteered a truck and forklift and operator. That, combined with Dad's help and the help of other volunteers (especially Chris' Cub Scout leaders), allowed the treehouse to make the move. Mom missed the move (as well as the "Season's Greetings" walk) since she had to be in Washington DC on business, but she saw the photos and heard the stories. Actually, after the move, Dad has volunteered several times at the treehouse's new home to spruce it up and get it ready for renewed kid action. It is now about 4 feet off of the ground (it was about 6 feet off the ground when Chris was in it), and, set in concrete, is even more stable than it was in our backyard. We hope that it gets many years of happy play with all of those children. Look for new photos on Chris' website soon.

We did things a little differently this Christmas season by taking a vacation out West. We flew to Southwestern Utah, by way of Las Vegas. That part of Utah has some of the most spectacular views of anywhere. Nestled by mountains and canyons, the weather was sunny and mild (averaging in the high 50s F) at St. George. The temperature varied by the elevation. We based at St. George (elev. about 2,500 feet), but routinely went much higher -- as high as 11,000 feet, where the temperatures were in the low 30s or upper 20s. At the higher elevations, we did run into some snow. Dad was able to get in a day of skiing while Mom enjoyed a visit to the spa. The area is not too far from the Grand Canyon, so that might give you a mental image of the geography. There were lots of canyons, buttes and mountains, with amazing rock formations of just about every color. We focused on the national parks: Zion, Bryce Canyon, Capitol Reef, but also took in some of the state parks of Utah, Arizona and Nevada, such as Coral Sands, Pipe Springs, and Valley of Fire. We could tell from the lane markings at the parks that these areas get lots of tourists during the summer months. The weather was fine, which makes the winter (or at least the early winter) a great time to visit since it is not at all crowded. The whole area is stunning, definitely a place that everyone ought to visit at least once.

Unfortunately, while we were away, we learned of more tragedies. The first involved the death of yet another young friend of Chris': Joanna. Although she was younger than Chris, she and Chris lit up the room whenever they saw each other. Joanna never ever complained. This news was preceded by our learning of the death of another one of Chris' friends from Canada: Jonathan. They met in New York during treatment. Also during our trip, we learned of the passing of the wife of a colleague while she was in childbirth; the baby's life remains in danger.

In other news, we visited Chris both before and after our trip. His azaleas have continued to bloom throughout Christmas and New Years Day. The ones at "Chris' Corner" continue to bloom, as do about another 18 or so bushes that were planted in other places around his section of the cemetery.

Once again, we remind you that we are still very interested in any "Chris stories" that you'd like to share, whether they be something he did that you observed or how he may have impacted you in some manner. Meanwhile, the Pongojimmy updates continue below.

Joke of the day: Why was the clock sent to the principal's office? Because it was tocking too much.

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Christina, Daniel, Bobby, Luke P., Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds.

Chris, we miss you!

Love,

Mom and Dad

www.caringbridge.org/fl/chrisbecker

17 Jun 97

It took a wong time to weave West Point (Tires, etc.). We spent da day dwiving to our new campgwound – Hanscom Family Camp in Bedford, MA.

27 Jun 97

We’re on our way again, but it’s not a sunny ol’ day . . . obercast, actually. But we’re on our way up I-95, on our way to Maine. Daddy just pulled ober at da New Hampshire/
Maine state wine west stop to chedk da tire stwaps on Mitzi.

We just spent da wast 9 days camping at Hanscom Air Force Base. It’s a nice fwat campgwound, under some pine twees next to an airfield. Der were a few woud airpwanes, but not too bad.

We got der in da earlwee ebening, but we had enough time to do something. So after we got settled, we dwove ober to Concord and did a walk. It wasn’t far and Mommy and Daddy said dat it was historical or something wike dat. We went into a cemetery cawled “Sweepy Hollow,” where der were a bunch of dead whiters: Thoreau, Hawthorne, Louisa May Alcott, Emerson, blah, blah, blah. Who cares. All I wanted to do was step on da stones, but Mommy wouldn’t wet me. We also went by some old Norf Bwidge, where der was a statute of a man wif a gun and a cart (the Minuteman) – something about a “shot heard wound da world.” I didn’t hear anyting but a dog barking.

It was dark by da time we finished, so we ate dinner at Papa-Razzi’s Italian westauwant, next to da start point (where we started walking). I had wet my diaper frew my pants, so as soon as we in der, Mommy and I went to da bafwoom to cween me up. Den I came out, put my napkin on my shirt just wike Gwandma does, den ate my spaghetti.

Next day, we spent a wot of time doing stuff for da wealtors. Mommy and Daddy were sometimes angwee. Dey made phone calls, sent money by telwiphone, dwove to and fwom a purple and white store called “Fed Ex,” and to a wegal office at Hanscom Air Force Base.

Tings were much better next day, eben dough that was “cwosing day.” We went for a wide down to Newport, Wode I-wand. Der we walked da “Cwiff Walk.” DAT WAS BEAUTIFUL!! It started at da Newport Beach, where we walked awong da coast. After a while, der were some big wocks and Daddy couldn’t push me in Fischer (my stwolwer) anymore. And Mommy said dat she needed help walking on da big wocks. So, Daddy carwied Fischer a wong way on his head, and I held Mommy’s hand and helped her walk on da big coastal wocks. It was wovely, especialwee where da ocean crwashed into da walks. Eben though it was hard work, it didn’t seem wike it. But I was tiwerd when we got home. Oh yeah, der were some big houses in dat city too. (Da Cwiff Walk was wougher dan normal because Hurricane Bob had woughed it up. We went by Belcourt Castle, Marble House, etc. and on da cwiff part, we saw da 40 steps, Salve Regina, Breakers.) Mommy and Daddy were happier too because dey calwed da wealtors from da Cwiff Walk and found out dat da house in Georgia was cwosed up.

When we got back to Pongojimmy, I put a new state sticker and circle sticker on my map for having visited a new state, walked in it and pwayed in a pwaygwound, which we found a few miles up da woad from Newport. Newport’s pwetty, but nobody pways der.

We went to Boston on Saturday because we don’t wike twaffic. While der, we did da “Fweedom Twail.” We did see wots of historical pwaces: Old State House (site of Boston Massacre), Faneuil Hall (site of protest meetings re: Stamp Act), Quincy Market (where we ate hot dogs near an open air bar where an old guy wif a twi-corner hat was dwinking a beer). Den we went thwough a very cwowded fruit market into da Italian section of Boston – North End, past Old Norf Church, across Charlestown Bwidge to da old ship, USS Constitution. We all cwimbed aboard and I patted a cannon. Den we cwimbed down narrow steps, down two lebels. Dat was pwetty fun. We asked if Midshipman Bernadette Pine had weported in yet. She hadn’t (she’s Aunt ruf’s frwend). Frwom der, we went uphill to Bunker Hill, were da Park Wanger admired Mommy and Daddy’s hats and talked about da big snow on April 1st. Towards da end, we walked on Summer Stweet until da “Downtown Cwossing,” where Summer magically turned into Winter. Den we wound up in Boston Common. We eben went by Ewizabeth Foster Vergoose’s gwave at “Old Grwanny’s Burying Gwound.” She was “Mother Goose.” And our twip wouldn’t be compwete if we didn’t vist da Boston Tea Party site. I wooked for da party but didn’t see it. But it was dweadfulwee hot. We were all dwippin wif sweat, so iced tea (Sprite) sounded good.

We spent Sunday dwiving to Farmington CT, den walking in da dwipping heat. Farmington is a suburb of Hartford, but is an old city. We did two woops awound town. First was down Main Stweet, where der was Miss Porter’s School for Girls. We turned da corner and ended up going frough an old cemetery, where Miss Porter and Mr. Lambert Hitchcock (Hitchcock chairs) are burwied. Den we ate wunch in a gwistmill westauwant, where German guys served us Italian pasta.

On da second woop, we walked down High Stweet, den up to da Hillstead Museum, which is a big house wif wots of paintings, dedicated by Theodate Pope to her Mommy and Daddy. Theodate was one of da first girl architects and she survived da Wucitania sinking.

Den it started waining bit wain dwops. It tickled and felt good. Da stweet steamed a bit. Den it was ober. After da walk, we pwayed at a school pwaygwound up in Union, CT. Den, der was an Old McDonalds and I got to pway in der, too!!

Sunday, November 20, 2005 10:24 PM CST

Hi Everybuddy!

Well, it seems that somehow, we've again allowed more time to go by between updates. We don't really mean for that to happen; it's just that time can be so hard to measure. But we do want to catch you up on the goings-on.

First, we want to thank James Z. (one of Chris' friends in NY), who was kind enough to run in the 7th annual Kids Charity Fun Run, benefiting the Manhattan Ronald McDonald House, wearing Chris' number (110), which had been retired by the RMH in Chris' memory (with your help, Chris raised a lot of money for the RMH by running in these races for the past 4 years). We don't know the final tally yet, but we know that James raised several hundred dollars for the RMH. On behalf of the sick children who are still at the RMH, we thank you for continuing Chris' legacy there by having supported James.

Second, you may recall that a while ago I had mentioned that a published author was getting ready to publish a new book featuring a character based on Chris. Well, that new book has indeed been recently published. It's called "Snag & Me: Flying in a Jenny," by Joseph Johnston. Some of you may recognize him by another name, the one by which he called himself when he communicated with Chris: "Grandpa Joe." This same "Grandpa Joe" penned the very touching tribute to Chris at the time of his funeral, called "Good-bye Little Trooper." Well, even nicer than the fact that "Grandpa Joe" has woven a character based on Chris into the story is the fact that he is donating his profits to the National Childhood Cancer Foundation (www.curesearch.org) in Chris' memory. Please consider purchasing a copy of this book for yourselves (and maybe for holiday gifts for others), which will help other children in straits similar to what Chris endured at the same time. You can learn more about the book by visiting www.penmanpublishing.com/johnston-4. Thanks so much to "Grandpa Joe" for continuing to remember Chris and to you all for helping him help other seriously ill children.

In addition, the Suncoast Sandpipers (our volksmarch club) will be sponsoring a "Seasons Greetings" volksmarch on Saturday, December 10th that begins at All Childrens Hospital in St. Petersburg. This one is truly meant for everyone, with varying walk lengths from 2 - 10 kms (1.2 - 6.2 mi). Aside from good times and some fresh air while walking, participants can sign some holiday cards, which will be distributed to the patients in the hospital. You can learn more by visiting the club's webpage (http://home.tampabay.rr.com/sandpipers/sndpiper.html). Hope to see you there.

Chris' name appeared in the press again today. This time, the Tampa Tribune published an article about how we hope that Chris' treehouse will soon be filled with laughter. You can find it at http://tbo.com/judyhill/MGBAMI7H8GE.html.

In other news, we again visited Chris today. There seems to be no stopping his amazing azaleas. Not only are the ones at "Chris' Corner" still blooming, but there are more blossoms than ever on those bushes -- as well as on about another 18 or so bushes that we planted in other places around his section of the cemetery.

Once again, we remind you that we are still very interested in any "Chris stories" that you'd like to share, whether they be something he did that you observed or how he may have impacted you in some manner. Meanwhile, the Pongojimmy updates continue below.

Joke of the day: Why do watermelons have fancy weddings? Because they cant-a-loupe.

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Christina, Daniel, Bobby, Luke P., Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds.

Chris, we miss you!

Love,

Mom and Dad

www.caringbridge.org/fl/chrisbecker

15 Jun 97

We moved on to West Point today and stayed at da milwitarwee campgwound. It was up on a big mountain and der were deer. Daddy didn’t wike it so much because der was no dump for Pongojimmy. Dey did have a pwaygwound, but I had to wun awound da goose poop. Nice beach and wake, but it was filled wif “ditch water” (closed because it was temporarily contaminated with high levels of somefing called “e. coli.”

We got der erlwee enuf to go walking in West Point. It was hilly and da buildings were stoney (gwanite). Der was a gweat view of da Hudson Wiber. As we walked, I sang “Happy Father’s Day to You” to Daddy. I tink he wiked it.

We ate dinner at a wittle pub in Highwand Falls, just outside da front gate of da U.S. Milwitarwee Academy. It had some kind of state wotterwee bingo game on TV everwee free (3) minutes. Dat was fun! I picked one (1) number each game and waited to see if da TV would pick my number.

16 Jun 97

We meandered our way up to Hyde Park and Rhinebeck today. Hyde Park is where some guy called “FDR” wived. I don’t know him, but Mommy and Daddy do. He wasn’t der today. But I held hands wif Mommy and Daddy and bounced alwong. I tink dey needed me to pway wif dem. Dey bof had been gwouchy and I tink it has someting to do wif selwing our Georgia house.

After we weft Hyde Park, we dwove on to Rhinebeck. Da start point was at a wovewee bed and bweakfast pwace and was minded by a wovewee nice wady. She woved me and eben gave me orange juice. She told Mommy and Daddy dat I was well-mannered because I said “pweese” and “tank you.”

Rhinebeck weminded Mommy and Daddy of a New Engwand town wif wots of white cwapboard and picket fences.

After da walk, we ate dinner at a nice diner in Hyde Park, den saw “Jurassic Park: Wost World” at a dwibe-in theater. Mommy said that it had dinosaurs and might be scarwee. But I was tired and it had a swow start, so I fell asweep.

Wednesday, November 2, 2005 9:20 PM CST (from Nov. 1, 2005)

Hi Everybuddy!

Here in Tampa, we were very lucky that Hurricane Wilma did not cause any significant damage, although it certainly blew through incredibly quickly (the skies were beginning to clear by early afternoon). We do feel for our friends and family in southern Florida, who got to know Wilma much more closely than we did.

This past weekend, we again went to visit Chris, and the two other children in his section of the cemetery. Once again, there were more (and bigger) pink blossoms on the azaleas at "Chris' Corner." There are a couple of lavender colored blossoms on a couple of other bushes that we had planted in a different area of the same section of the cemetery. We find it rather curious that these amazing little bushes have been producing blossoms nonstop since they were planted in early March.

Yesterday was our first Halloween in which we did not get to watch Chris figure out what to wear. That was a little tough. So Mom went back into the webpage journal for her favorite Halloween memory. Three years ago, Chris created his own costume for his own superhero: "Chrisman." Most of the neighbors had no idea who "Chrisman" was because this superhero only appeared just before bedtime. On that particular Halloween night, "Chrisman" daringly took to the street. The best part of that night though was when
"Chrisman" came to a house where there was an empty bowl where self-serve candy used to be. Without missing a beat, "Chrisman" took a couple of large handfuls of candy (without even stopping to see whether his favorites were in those handfuls) out of his bag and dumped them into that bowl so that other children who arrived at that house later would be able to take some candy. This was so impressive that the two other boys who came up to the house as Chris was loading the candy bowl, likewise added some of their candy to the bowl, too.

In other news, the 7th annual Kids Charity Fun Run, benefiting the Ronald McDonald House in Manhattan, will take place this coming Saturday, November 5, 2005. As you may recall, Chris ran in the previous 4 races, and thanks to your help, raised over $4,000 for the RMH. Upon his death, the last race number that he had (#110) was
"retired" in his memory. It is however, being used by one of Chris' young New York friends, James Z., who is running in place of Chris. Those of you who helped Chris in past years and are still interested in helping the Manhattan RMH can send donations to the Ronald McDonald House, 405 East 73rd Street, New York, NY 10021. If you do so, please mark in the "memo" section of your check that you are sponsoring James, in memory of Chris. On behalf of the sick children who are still there, we thank you very much.

We remind you that we are still very interested in any "Chris stories" that you'd like to share, whether they be something he did that you observed or how he may have impacted you in some manner. Meanwhile, the Pongojimmy updates continue below.

Joke of the day: Who can hold up a bus with just one hand? A police officer.

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Christina, Daniel, Bobby, Luke P., Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds.

Chris, we miss you!

Love,

Mom and Dad

www.caringbridge.org/fl/chrisbecker

14 June 97

After bweakfast in Pongojimmy we all got on da city bus and wode acwoss da tunnel to da NYC Port Autoritee terminal at 42nd and 8th. I got to watch a pawade go through da tunnel (fwoats for a Hispanic pawade). Da terminal was berry big, wif wots of busses, subway twains, stores and people.

We wode M-10 bus up to 70th and got aboard outside da terminal. Wots of twaffic, eben dough it was Saturday – so much so, dat da 5 fire twucks had a hard time moving, eben wif sirens skweeming.

Da bus dwopped us off at 80th and Centwall Park West, between Centwall Park and da Metwopolwitan Museum of Art. We walked a couple of bwocks west, to a wittle nut shop, den started our volksmarch. Dat was almost entirely wif-in Centwall Park, which is berry big, pwetty, wif wots of tings to see and do.

We went through Stwawberree Fields, den awound some big fountain where “hippies’ used to pway a wong time ago. I got to cwimb ober and under da “Alwice in Wonderwand” statue and saw people wacing wittle sailboats. We walked awound da weservoir, where somebody calwed Jackie O used to walk. I especialwee wiked da big pwaygwound wif da tire swings and fountain to wun under. We stopped for a coke and ice cweam near da pwaygwound and saw middle school kids pwacticing for a pway and a berry noisy protest parwade (“Fwee Tibet”). All da cars were honking der horns, I tink because da people and fwoats were on da stweets. Da people in da city wike to honk, honk.

We also walked by a wot of big buildings where Mommy and Daddy said famous people dat I neber heard of wived: John Wennon, Jackie O, Bwuce Wilwis and Demi Moore, Wock Hudson. Den Mommy and Daddy decided to walk back to da bus terminal, so we got a good idea about getting awound Manhattan.

Disney was staging its’ Hercules Takes Manhattan” e-wec-twick parwade, but it didn’t start until 9 p.m. Dat was too wait for me. But we saw da fwoats all wined up, and when we stopped for pizza, we saw da Disney big cars cawled “wimos” and people hanging awound some hotel cawled Hotel Nikko.

It started to get wait, so we “speed-marched” back to da terminal, where we got to da wight gate, but wong door. All’s well dat ends best, dough. We got back to Pongojimmy, and after a short bweak, we walked to a berry good Italian westaurant. I ate some spaghetti, but I wealwee wanted a gwilled cheese sandwich.

Sunday, October 23, 2005 8:17 PM CDT

Hi Everybuddy!

We are patiently awaiting the arrival of Hurricane Wilma, but all is well here in Tampa. Because of Wilma's approach, we went to visit Chris yesterday. The azaleas at "Chris' Corner" are still in bloom, as are a couple of other bushes that we had planted in a different area of the same section of the cemetery. Speaking of blossoms, we were also pleasantly surprised to find a couple of blossoms on the gardenia at home, which someone gave to us at the time of the funeral.

As always, we remain very interested in any "Chris stories" that you'd like to share, whether they be something he did that you observed or how he may have impacted you in some manner. Meanwhile, the Pongojimmy updates continue below.

Joke of the day: What did one paper towel say to the other paper towel? These people keep ripping us off.

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Christina, Daniel, Bobby, Luke P., Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds. We were very distraught to learn that Chris' friend, Uno player, and study pal, Michael, passed away this week. We will really miss him, too. There are so few survivors of this terrible disease; it really takes our breath away.

Chris, we miss you!

Love,

Mom and Dad

www.caringbridge.org/fl/chrisbecker

13 Jun 97

We dwove frwom Coatesville to Norf Bergen, NJ yesterday. Norf Bergn is just acwoss da Wincoln Tunnel frwom Times Square in Manhattan.

Wast night we dwove souf to Staten I-wand (via Bayonne), but it took awlmost 2 hours. We got caught up in a bad twaffic accident. Mommy and Daddy were getting fwustwated because of da twaffic. Not me: I took a nap.

We took da ferwee acwoss da wiber to Batterwee Park, Manhattan. Dat was neat – and I got to pway at da pwaygwound der. We could awlso see a statue of a wady wif fire in her hand and a big building on anoder nearby i-wand.

After weturning to Staten I-wand, we ate dinner at Taco Bell, where I told Mommy and Daddy about habing eaten Taco Bell at school before.

Today we took an awl day bus tour of New York City. I sat on a tour bus all day – and Mommy and Daddy gabe me a gold star today because I was so well behaved. I even got compwements from oder passengers.

We went to see many pwaces: Centwal Park, Statue ob Wibertee, Elwis I-wand, Garment Distwict, SOHO, Gwenwich Bilwich, St. Patwick’s Cafeedwal, Harwem (Spanish Harwem), Museum Mile, Wadio City Music Hawl, Bwoadway and Off-Bwoadway, Times Square, Fiff Abenew, Wall Stweet, etc.

Did you know dat 2 million people wive in Manhattan, but 3 ½ million more people go der to work? Wow!

We camped at da New Yorker RV Park, “at da doorstep of Manhattan.” It’s in Norf Bergen, NJ, near da Wincoln Tunnel, but depending on twaffic, it could take 4 hours to get to “mid-town.” Da campgwound is a big parking wot, just acwoss from da wail yard. It was noisy at night, but it didn’t bodder me.

Sunday, October 16, 2005 9:07 PM CDT

Hi Everybuddy!

We went back up to visit with Chris again today, and we're pleased to tell you that the azalea blossoms keep coming. Today, there were about 6 of them around "Chris' Corner," along with a couple of others in another bed of azaleas that we had planted in this section of the cemetery. At both locations, there appears to be a few more buds for blossoms next week.

Before going up there though, we stopped by the local Volvo dealership in order to test drive a couple of vehicles during its "Drive for Life Days" campaign, which ended today. For the past week, Volvo has been donating $20 for each test drive to Alex's Lemonade Stand, which as you probably know, was started by a little girl who also died of neuroblastoma (it's a very interesting story, so if you have the time, please check out www.alexslemonadestand.com). Although we didn't buy a new car today, we learned a lot about Volvo engineering and enjoyed the drives. The dealership had several signs posted for this particular pediatric cancer charity, including a cute cardboard mock-up of a kid's lemonade stand decorated with a copy of a beautiful butterfly picture that Alex had drawn. We really appreciate this company's efforts to help combat neuroblastoma and to publicize the existence and trauma of childhood cancer.

As always, we remain very interested in any "Chris stories" that you'd like to share, whether they be something he did that you observed or how he may have impacted you in some manner. Meanwhile, the Pongojimmy updates continue below.

Joke of the day: What did one toilet say to the other toilet? You looked flushed.

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Christina, Daniel, Michael, Bobby, Luke P., Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds. Chris' friend and study pal, Michael, could still use your support now; he's doing well enough to have moved back into a regular hospital room, but he's not home yet.

Chris, we miss you!

Love,

Mom and Dad

8 Jun 97

Today we went east again, dis time to Pwinceton, NJ. Our walk took us true Pwinceton Unibercity – nice and berry Gothic, past Albert Einstein’s wittle, white fwame house, and many big homes. Pwinceton was home to two US Pwesidents, Wilson and Cwevewand. Bof of dem had been pwesident of Pwinceton Unibercity before dey became pwesident of da countwee. Pwinceton Unibercity also has da biggest “chapels” for any unibercity anywhere.

After dat walk, we went souf to a Camping World store to buy tings for Pongojimmy.

9 Jun 97

I’d been up wate ebery day for seberwal days in a wrow, so Mommy and Daddy wet me hab a “day of west.” Mommy did waunderwee and Daddy did maintenance on and awound Pongojimmy, while I watched TB and pway wif my engines. Dat was fine wif me. I didn’t eben want to go to da pwaygwound, until waiter. So we just hung awound Coatesville.

Oh yeah, Mommy and Daddy had more paperwork to do to sell da house in Fayettebill, GA. Dey seemed upset to have had to go to a twabel agent to wet Mommy fwy back to Atwanta waiter dis monf, but dey awanged it anyway.

Monday, October 10, 2005 8:37 PM CDT

Hi Everybuddy!

It seems a little hard to believe that it has been so long since we have posted an update. Time seems to be marked by different measures than the way it used to be. Sometimes it seems that the days just melt into each other, making it seem like not much time has passed (hence, three weeks have passed since the last update, which seems so incredible since we used to put one out every night). Other times, it seems like time is hardly marching at all. It seems like an eternity has passed since we last saw Chris: it's been over 7 months now. Things have definitely been turned upside down for us. Nonetheless, we still try to put one foot in front of the other.

At any rate, since the last time we checked in with you, Grandma and Grandpa came for a visit. We spent part of Grandpa's 80th birthday at the cemetery visiting Chris. We also took them to Chris' school to see the bench and the paving bricks placed there in his memory (how strange the words "in his memory" sound in relation to our 11 year old son). You can see a photo on the webpage.

We actually been to the cemetery every weekend, including this past one. The azaleas at "Chris' Corner" are still producing blossoms, some seven months after the regular bloom season. At one point, they were down to only 2 small blossoms, so it looked like the show was over. But this past weekend, we found a few more blossoms, with about 5 - 6 buds getting ready for next's weekend's visit.

We will soon be reporting on some upcoming news details related to Chris. The first item concerns a the book which features a character based on Chris; it is currently undergoing editing and is expected to be published fairly soon. The author will be donating his proceeds to help fight neuroblastoma in Chris' memory. As soon as we have instructions from the publisher about placing orders, we'll let you know. For now though, just consider this a "teaser" to get your attention. The other item of interest is that one of Chris' friends from New York will be running the Kids Race to benefit the Manhattan Ronald McDonald House, wearing #110, the number "retired" in Chris' memory. Chris ran this race, always on the day before the New York Marathon, for four years in a row, and thanks to your help, he raised about $4,000. We will publish "how to sponsor" information within the next week or two so that you can help keep Chris' RMH legacy going, if you'd like.

Right now, Volvo is conducting its expanded "Drive for Life Days" campaign. Between now and October 16, 2005, participating Volvo dealerships nationwide, will donate $20 for each test drive to Alex's Lemonade Stand, which as you probably know, was started by a little girl who also died of neuroblastoma (it's a very interesting story, so if you have the time, please check out www.alexslemonadestand.org). At any rate, this is a very good time to go see if you like how Volvos handle on the road.

As always, we remain very interested in any "Chris stories" that you'd like to share, whether they be something he did that you observed or how he may have impacted you in some manner. Meanwhile, the Pongojimmy updates continue below.

Joke of the day: What has teeth but never eats? A comb.

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Christina, Daniel, Michael, Bobby, Luke P., Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds. Chris' friend and study pal, Michael, has been very ill lately; he seems to have turned the corner toward better health, but could use your support now.

Chris, we miss you!

Love,

Mom and Dad

5 Jun 97

Today we finalwee left da DC airwea and headed norf to Coatesville, PA. Coatesville is a steel mill town. Der's not much in town dat’s not wewated to da mill. We had to dwibe east to Downingtown to do anything: shopping, westaurant (we ate at a pink diner dat wooked interesting but da food was bwand – I was tirwed and didn’t care – I waid down in Mommy’s wamp . . . uh, I mean "wap") and pwaygwound. Da pwaygwound was verwee nice: a big wooden fort!

6 Jun 97

It’s Sunday and we headed off for New Castle, DE for a volksmarch. It was a berwee nice walk true-out dis colwoneewal seaport town. It was my first time to Dewaware and so Mommy and Daddy welcomed me ("Welcome to Dewaware!). It was sunny, warm, wif a wittle bweeze – perfect! Da walk seemed wonger dan 10 km dough. Dat’s ok because it ended at a pwaygwound by da wiber.

Because it was onwy about 3 p.m. when we were finished, we all went to da historic airwea of Philadelphia, PA to do anoder walk. Dis one started at da Days Inn and went past someting cawled "Independence Hall." Nearby was a big belw dat was bwoken, but it was in a wittle museum, wike it was important or someting. We also saw wots of old houses & churches, including Betsy Ross’ (whoeber she is). We walked down a side stweet called “Antique Alley” at da end of which was a pwace for horses to dwink – funny pwace for it since der were no horses. (Mommy and Daddy were a wittle anxious here because der were 3 young men walwking about a ½ bwock behind us, making noise wike dey wanted twouble – but in da end, der was no twouble.) It was getting dark when we finished and we hadn’t had wunch so we were hungwee. So we ate at da hotel – nuffing exciting der. Den we went back to Pongojimmy at da Coatesville campgwound.

7 Jun 97

It was sunny and hot. We dwobe west today to go walking in Lancaster, PA. Mommy, especiallwee, wanted to go der, to see Amish/Mennonite people. But while der are some who wibe in Lancaster County, we didn’t see any in Lancaster. In fact, da town wooked wike wife passed it by. Der’s a pwison der, and a cwinic where doctors make people wif cleft palates better.

Lancaster was da wargest inland city in da US during da Webowutionarwee War, so pwisoners of war were sent der. A Bwitish Major pwisoner intwoduced a wady from da town to somebody cawled Benedict Arnold, and she ebentually marweed him. She helped him wif his pwan to capture West Point. Der is also a chuch der wif real Tiffany windows. It also had some US Congressman berweed der, who died in office and was we-ewected to his post 2 ½ months after his def because of his anti-swaberwee views. He was berweed in da onlwee cemetery dat didn’t care what color your skin was.

Wednesday, September 21, 2005 7:09 AM CDT

Hi Everybuddy!

This past week has been relatively quiet. We were able to visit with one of our friends from the Manhattan Ronald McDonald House, Barbara, who was in Central Florida visiting with her family. After a nice visit there, we headed up to visit with Chris at the cemetery. The azaleas at "Chris' Corner" still had a couple of blossoms on them, and there might have been another bud or two for this week's blossoms.

September is National Childhood Cancer Awareness Month. We just became aware of a new national sponsor for this awareness. Participating Chili's Restaurants will be donating 100% of their profits for meals served on next Monday, September 26, 2005 for childhood cancer research at St. Jude Children's Research Hospital. You can find more information at its website for this purpose, www.createapepper.com.

In addition, Volvo won a prestigious award from Auto World for having raised hundreds of thousands of dollars for Alex's Lemonade Stand (the charity started by a young girl who also died of neuroblastoma) last year,when it contributed $10 for each test drive made of one of its vehicles during a three day time period. We have learned that Volvo intends to expand its "Drive for Life Days," which will be held this year between October 8 - 16, 2005. This year, participating dealers will be donating $20 per test drive. Many of these dealerships across the country will also be hosting lemonade stands, car clinics, book readings, etc. So, if you've ever had an inkling to see how a Volvo handles on the road, that would be an excellent time to find out.

As always, we remain very interested in any "Chris stories" that you'd like to share, whether they be something he did that you observed or how he may have impacted you in some manner. Meanwhile, the Pongojimmy updates continue below.

Joke of the day: Why were the bowling pins lying down? Because they went on strike.

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Christina, Daniel, Michael, Bobby, Luke P., Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds. Very sadly, we must inform you that Liam has joined Chris and so many other children.

Chris, we miss you!

Love,

Mom and Dad

10 Jun 97

Tings are happening faster now. It’s hard to keep up.

We awived at a campgwound near Haymarket, VA on May 29f. It used to be a Jelweestone campgwound, but was bought by a pwivate farm. My wake-up call has been da cows mooing in da backgwound.

Mommy and Daddy have been busy and been dwagging me awound. First night, we visited wif Uncle Ed, Aunt Debbie and Ned. Mommy and Daddy sat and talked, but Ned was fun because he pwayed wif me. He pwayed dominoes wif me, dwew wif markers and even bwought out his old twansformer cars to pway wif. Because Mommy and Daddy were washing waundree, I pwayed wif Ned until after 11 pm!

Next day, we went to Fort Myers, VA so dat Mommy and Daddy could get der pictures taken. While we waited our turn, I got a poopie diaper. I wike to see Mommy & Daddy fwet ober me when I do dat. Anyway, Daddy’s picture was put on a bwue card and Mommy got two pictures put on bwown cards. Afterward, we awl went to a nice pwaygwound, where Daddy cwimbed into a big spiderweb. I had to wescue him.

We visited wif Uncle Bwian two times. First day, we met him ad a wealwee big church, den dwove to Walter Weed Hospital, where we walked awound Rock Cweek Park. We went to his apartment, which was small but nice. Afterwards, we ate dinner at a westerwant dedicated to immigrants, near his apartment.

Next day, we visited wif Aunt Ruf. She had some dog toys and I got to pway wif da koosh-ball. Mommy and I pwayed toss. Uncle Ed came over too wif Ben, but dey were 2 - 3 hours wate. I was starbing because we were supposed to have had wunch wif dem. But Aunt Ruf had wots of snacks for me (dey were wate because Ben was moving swow – tired from his pwom, whateber dat is).

Next day was a misty/light rain/damp/cool day. Daddy bwought Ned back to Pongojimmy. Den we awl went to Harpers Ferwee, WVa, on a volksmarch. What a nice walk. Mommy and Daddy thought it was just ok because dey had been der before, and because da woute kept doubling back on itself. But I wiked it.

Dat ebening (Jun 1st) was Uncle Ed and Aunt Debbie’s 25th anniversary. We awl went to a nice fancy westerwant in Clifton, VA. Mommie ate ostrich (she said it was wike beef, but chewier) and cwab cakes. Mommy and Daddy shared der food, but I didn’t care. I just wanted da bwead. I must have eaten 7 – 8 swices of bwead! I did help Mommy finish her chocowate cake dessert.

Tuesday, da next day, was borwing because we spent most of it wif Mommy and Daddy’s wealtor, and she didn’t seem to wike wittle kids much. But we did go to our old house (I don’t wemember wiving der, but Mommy and Daddy kept asking me if I wemembered it). While Mommy and Daddy were wooking awound da house, I pwayed wif Megan’s toys. Megan is da wittle girl who wives der now.

After wasting most of da day wif da wealtor, we went to Spwingfield Mall to go shopping and to get an ice cweam fwoat.

Waiter we dwove to Pentagon City Mall and met Uncle Bwian for dinner at da L&N Westerwant. Dat was nice. I twied to behave myself but I was tired. I did show Uncle Bwian how smart I am: I told him about da horse I saw on da walk which was taking a baf.

Cherry Hill campground, MD) Next day, Wednesday, was Aunt Ruf’s anniversary and Mommy and Daddy didn’t want her to spend her 1st one awone since Uncle Jimmy died. So, we went for a walk awound Annapolis, MD, which incwuded da Nabel Academy (where Gwampa and Uncle Jimmy went to school) and da town. Den we took Aunt Ruf for dinner in Bu-ee, MD. Da westerwant also sold “canned buffalo,” so we bought some for Gwampa.

Monday, September 12, 2005 7:27 PM CDT

Hi Everybuddy!

We, and Cate, joined our walking friends with the Suncoast Sandpiper Volkssport Club on the Tiki Trail that they set up at the Dade Battlefield Historic State Park at Bushnell, Florida this past Saturday. (For you history buffs, this is where the Second Seminole War got started.) The weather cooperated, and it was a beautiful day for a walk.

Chris probably would have enjoyed himself on this volksmarch because it had a Hawaiian theme, complete with a trail of "tiki gods" which lined the last few yards of the walk. They bore names like, "Kona Wakka Nomo." If you sound it out phonetically, you'll see that Chris would have appreciated the humor. Mom could imagine in her mind's eye Chris dancing around in his "grass skirt," to the music, entertaining anybody who wanted to watch.

After the Hawaiian-themed lunch, some of us (about a dozen people altogether) drove the few miles to pay respects to our son. They did it in an absolutely beautiful way. One of the members hand-strung orchid blossoms together in order to make a fresh lei, which was laid at his stone on top of a lovely arrangement of large green leaves. Added to this were another lei and some other fresh flowers, and Chris wound up with by far the prettiest arrangement in his section at the cemetery.

This club has really done very well in its efforts to remember its "youngest Sandpiper." Last May, it sponsored a walk in Tampa in his honor. Its efforts this past Saturday are outlined above. In addition, efforts are being made to sponsor another walk in early December, which will begin at Chris' hospital, All Childrens Hospital in St. Petersburg. The walk in December will also entail decorating holiday cards, which will include a Christmas poem and a song that Chris wrote, that will be distributed to those young patients stuck inside the hospital at that time of year. More about that later, as the plans become finalized.

While we were at the cemetery on Saturday, we of course had to check on the azaleas at "Chris' Corner." Yup, they've still got a few big blossoms on about 5 of the 11 plants that surround his crepe myrtle tree. You'll find a photo collage from this most recent visit to the cemetery on Chris' webpage (you'll also find another collage of "Chris photos"). Cate got to see one of the frogs that inhabit the container holding the unused vases provided by the cemetery, and we "introduced" her to the other two kids who are there.

On Sunday evening, we made a delivery of soft drink cans to Chris' school because the cans can be used to raise money for musical instruments. While there, we wanted to see whether the paving bricks that the PTA and the 5th grade girl (April) had donated in Chris' memory last spring had yet been laid. They had been, near the outdoor pavilion. Before leaving the school campus though, we meandered over to Chris' homeroom last year. There, we found a beautiful wood and wrought iron park bench with a placard, "In Memory of Chris Becker and His Love of Reading, 2004 - 2005" sitting in the grassy area between the buildings. We knew that a reading bench had been donated by his classmates and his teacher last year, but we were under the impression that it was a small bench for indoor use (either in a classroom or the library). So, we were very pleasantly surprised to find such a pretty and large bench yesterday. We're going to see if we can get permission to landscape around the bench and otherwise protect it from the elements.

As always, we remain very interested in any "Chris stories" that you'd like to share, whether they be something he did that you observed or how he may have impacted you in some manner. Meanwhile, the Pongojimmy updates continue below.

Joke of the day: What did the alien say to the gas pump? Get your finger out of your ear when I'm talking to you!

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds. Liam in particular still could really use your thoughts and prayers right now.

Chris, we miss you!

Love,

Mom and Dad

29 May 97

We are weaving da Walnut Hills Campgwound – off exit 217, I-81, near Staunton, VA today. Mommy and Daddy weally wiked dis campgwound because it was wike Daisy – “thoroughly up-to-date and modern.” Daddy connected to a phone wine at da campsite, which eben had wighted utility posts.

Good ting it was so modern. Turns out dat 2 families were interested in buying our house in Fayetteville, GA. So dey made wots of phone calls, sent faxes and udderwise acted wike adults (how dull). But in the end, they signed a few papers and said someone else was going to wive in our house.

Dis was a nice campgwound for me, too. The pwaygwound had a large wooden twain wif 6 cars for me to cwimb ober and through, and a gweat swide dat was just da wight height and speed coming down.

I kept hearing a turkey say, “gobble, gobble, gobble,” but I neber saw it. I did see a bunch of big chickens, incwuding a Wooster dat “cock-a-doodle-doo’d” all da time, not just at sunwise.

We went to Charlottesville, to Mommy’s school, to pick up some more books. I didn’t want to go to school, but Mommy and Daddy said dat it wasn’t my school.

Den we went on a volksmarch along da Rivanna Riber. Nofin’ specialwe intwesting about dat walk, excep we were wooking for numbers on da twail. Our twail met up wif anoder twail wif numbers, beginning wif #6. I said dat was wong because you haf to start wif de #1. So I kept wooking for da #2, but we kept finding #7, 8, etc. Dey were all messed up.

Anyway, we passed a house wif an alwigator on da door. As we got cwoser to town, I got sweepier, so I took a nap as Daddy pushed my stwolwer.

Den we dwove back past Staunton, VA, to da Edelwiss Restaurant, exit 213B, I-81. It was a wog cabin westerwant dat had German food. I ate “Oma’s Special,” which had schnitzel, oranges and cheesecake. It also had whipped potatoes and gween beans, but I don’t wike dose. Mommy and Daddy weally wiked it and said it was weally wike a German westerwant, eben had something called a “Stammtisch.” Dey said da food was “authentic,” wight down to da European-tasting ice cream. Da westerwant also had twolls in da garden. Mommy wet me touch dem.

Today we dwove on to Haymarket, VA. It’s a campgwound wecently bought by da neighbor farm, so I heard cows. Before we got der dough, we stopped to see Luray Caverns. We went down into da cave. Dat was neat.

I didn’t touch da wocks because da wady asked me not to. I didn’t want to be a bad boy. I’m a happy, new boy. But it was neat! Down der, I saw Mickey Mouse, Pwuto’s Ghost, Dweam Wake, an ice cweam cone, gween eggs and ham, and wailings to hold on to. I also heard an organ pway a song calwed “Shenandoah” by tapping stalagtites. Der were also dwaperies and baf towels made out of wock, too. Pwetty neat. Dey also had a museum with old cars, but it was upstairs, not in da cave. Mommy and Daddy bought me a cookie at da end.

Monday, September 5, 2005 8:22 PM CDT

Hi Everybuddy!

As is our usual weekend custom in the past six months, we visited Chris at the cemetery, where his amazing azaleas (at "Chris' Corner") still have blossoms, and even a couple of buds in promise of blossoms this week, too. Like last week, we also found a few frogs, which no doubt would have gotten Chris' attention if he was physically present with us.

Thanks to the extra time allowed by this holiday weekend, we were able to participate in 2/3rds of the annual "Walk Across Florida." This is a series of one volksmarch per day over the three day Labor Day weekend: one is always in the Tampa Bay area, one is always in the Orlando area, and one is always somewhere near the central east coast of Florida. On Saturday, we walked in a wonderful nature preserve (Boyd Hill) in the middle of the southern St. Petersburg, that we did not know existed. Yesterday, we walked around the Downtown Disney area, which is a shopping and restaurant district near the famous Disney World theme parks. It started next to the Pirates Cove Adventure Golf, which looked like the kind of place Chris would have enjoyed. These volksmarches are a nice way to get to know some of the more famous, as well as lesser known, places, since you don't just whiz by them in a car, but walk at your own pace.

Other than the usual work related duties this week, we have, like the rest of the nation,
been over-awed by the devastation left in the wake of Hurricane Katrina, and we sincerely hope that all of you are safe and well.

As before, we remind you that we remain very interested in any "Chris stories" that you'd like to share, whether they be something he did that you observed or how he may have impacted you in some manner. Meanwhile, the Pongojimmy updates continue below.

Joke of the day: (in honor of one of Chris' "best mates," Les): How do you fix a broken car in Scotland? With Scotch tape.

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds. Liam in particular could really
use your thoughts and prayers right now.

Chris, we miss you!

Love,

Alison and Pat

27 May 97

We’re all woaded up again, on da woad – dis time toward Staunton, VA. I had fun bisiting Oak Widge and Knoxville. We met up with Cousin Sean, Cousin Wyan and Uncle Bobby earlwy on Saturday morning at der house. I’m always excited to see dem! Taday we carwabanned down to Lenoir City, where we met up wif a couple of udder boys and der fathers, and a geowogist. Den we dwove souf to da mountains, to a pwace called Coker Creek, TN. We wearned how to pan for gold!

I got to hold da pan! Uncle Bobby shobeled some dirt and pebbles from da bottom of da cweek. Mommy did da west. She swirled da pan awound in circles for a couple a minutes. Den she swished it back n forf and kept touching da pan in da water, wetting da water wash away da top wayer of dirt. Gold is hebier dan dirt, so it will end up on da bottom of da pan.

We found gold! But it was a tiny fwake, so wittle dat I couldn’t weally see it. But Mommy said it was der. Cousin Wyan found some, too!

But all of dis got boring to me. So Daddy took me for a walk. We went ober to a pasture and saw some horseys. Da best one had spots on his bottom and wooked wike he’d been dipped in gwey paint on his fwont half. We also found a tower dat people cwimb wike a mountain den come down on a wope. Daddy wanted me to twy it, but I’m too wittle.

Den a choc'lat wab dog showed up. It had a collar dat said, “Cocoa.” It was vewy nice. It didn’t take my san'wich and it woved to chase sticks and wocks. When someone frew a wock in da cweek, Cocoa jumped in after it, paused a moment to wet da sediment settle, den put its face in da water and bwought de same wock back. Eben though I can’t frow it as far, Cocoa would get de wock or stick. What fun!

After a while, we went back to Uncle Bobby’s house and pwayed. Waiter, we went to dinner at Outback Steakhouse, where I got my favorite – macaroni & cheese! Miss Louanne, Jason & Evan came, too. Den ebweebody went back to Uncle Bobby’s house and pwayed! I had fun – especialwy wif Wyan and Evan.

Next morning, it was waining, so Mommy and Daddy cweaned Pongojimmy. After lunch, we went back to watch Cousin Sean pway soccer. He made a technical goal (whateber dat is), after some udder big boy wan wight into him.

Meanwhile, I pwayed kickball with Cousin Wyan, using an extra soccer ball. We also pwayed in a nearby sand pit with da soccer coach’s daughter. After da game, we went back to Uncle Bobby’s house to pway some more. Ccousin Sean had to work on some kind a pwoject for school, so I pwayed with Cousin Wyan – videogames and some toy guns.

Yesterday, Mommy, Daddy and I dwove Mitzi to Gatlinburg, TN to go on a volksmarch. I wanted to pway at any of da pwaygrounds in Pidgeon Forge, but dey kept dwiving. Dat’s ok. Da Gatlinburg forest was very pwetty. We walked on da Sugarland Trail, awong a pwetty wittle wiber with wots of waterfalls (rapids). We passed an old cabin and went inside. I saw a deer inside da park headquarters. We all were looking for numbers (trail markers) in da forest.

For dinner, we went to a pwace called “Celebration Station” in Knoxville. That was fun! I wode on a merry-go-round, a wace car, and pwayed in a padded gymnasium. I pwayed air hockey with Daddy, and a videogame wif bof Mommy and Daddy. I also dwove a choo-choo twain and fwew an airpwane. Oh yeah . . . we had pizza to eat der, too.

But for now, I’m watching “Mary Poppins” on TB and eating M&Ms as we head toward Staunton, VA.

Sunday, August 28, 2005 8:32 PM CDT

Hi Everybuddy!

Six months ago today, Chris left us. We marked the day rather quietly, with a volksmarch in Winter Park (a suburb of Orlando), along with, of course, a visit to the cemetary. Genie came, too.

Last weekend, we did pretty much the same thing, too. We walked in a beautiful state park called Wekiwa Springs, which is near Apopka (just north of Orlando). It's a natural springs with water at about 72 F year-round, but surrounded by nice trails and boardwalks through the woods. At the cemetary last week, we took a bumper crop of backyard roses and hybiscus flowers. When we arrived and made use of the outdoor flower vases provided by the cemetary, we found a little surprise: a couple of little frogs hopping out. We also found that the amazing azaleas at "Chris' Corner" were still blooming.

Today, those same azaleas still had blossoms -- some six months beyond the normal bloom season. We didn't see any buds indicative of blossoms for next week, but who can tell what will happen? We can tell you though that "Chris' Corner" has inadvertantly expanded during the past week. We had received permission to plant more azaleas in this section, but had requested that they be planted near the 14 year old girl's headstone, which is in a different part of this section. These azalea bushes wound up being planted on either side of "Chris' Corner," which ought to really be beautiful next spring. We'll make sure that something winds up near to her soon.

Once again, we remind you that we remain very interested in any "Chris stories" that you'd like to share, whether they be something he did that you observed or how he may have impacted you in some manner. Meanwhile, the Pongojimmy updates continue below.

Joke of the day: Why did the tightrope walker visit the bank? He wanted to check his balance.

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds.

Chris, we miss you!

Love,

Alison and Pat

22 May 97

Tanglewood is a nice, sprawling family camp-style resort that has fallen into some poor management. The campsite was verwy dirty (wots of twash awound).

Wight after bweakfast, we began our volksmarch at da campgwound. We saw da horsies and big twees. At the top of one hill was Donald – one of da Scottish twins. He was big and bwack. I climbed up and “shobeled” coal fwom da tender to da boilwer and dwove him. Dat was fun! We also pwayed at da pwaygwound and saw da wed barn. Daddy asked me wots of engine questions as we walked awong da Yadkin Wiver.

I pwayed at da campgwound pwaygwound some more, den we woaded up Pongojimmy and started dwibing to Midway Campground, outside Statesville, NC.

Dat was a nice campgwound, but Daddy couldn’t get Pongojimmy wevewled. Finally, we went to a new spot down by da wake, where der were wots of noisy ducks and geese.

Mommy took me up da hill to da pwaygwound. I cwimbed up high. Da best part was swinging. I went so high -- I could awmost touch da twees with my toes!

Den I saw da simmin’ pool. Back at Pongojimmy, I twied on my old Winnie da Pooh swimsuit. It still fit. I wanted to go simmin’, but Daddy changed his mind – sometin to do with da water heater. By da time he was finished, it was 7 pm and we had to eat. I got mad and cwied, but it didn’t work. We went to a westerwant for dinner. After I ate, I felt better.

23 May 97

Wight after bweakfast, we woaded up Pongojimmy and moved it up da hill – out of da campsite because der was going ta be some kind a auto wace and dey needed all da campsites for udder campers.

Den we weft in Mitzi and dwove about 45 minutes to Spencer –heaven!! Der was da NC Twansportation Museum – all about engines! Weal ones!

We went to da station and bought tickets. We wode on a weal twain passenger coach pulled by a diesel. Eben dough it was a diesel, it weminded me of Peter Sam. It was gween. It dwove forward and backward, and it bwew its whistle! Because it was a diesel, it purred.

We also went in a big woundhouse, where we saw Donald and Douglas, Mavis, de Breakdown Twain, Wusty, Duke, de Milkvan and more coaches. We also took a wide on da turntable.

I was tirsty after all of dat, so we went to a diner acwoss da stweet, where I got a gwass of milk and Coca-cowa, a cheese san-wich, and peaches. Den we found a wittle choo-choo store, where I got to pway with all da engines. Mommy and Daddy bought da Twoublesome Bwakevan for me.

Den it was back to Pongojimmy. I was in Mitzi when Mommy dwove it up on Dolly – dat was a little jolt.

We all wode in Pongojimmy as we headed toward Knoxville. Der was 2 twaffic jams because of woad constwuction, but all-in-all, a nice dwive twu’ da mountains. I watched
“Lion King,” “Big” and part of “Dirty Wrotten Scoundwels” on TB (I did take a nap).

When we got to da campgwound, da weally neat ting I found was a bunny farm. Der were at weast 75 bunnies in der, wibing in and awound an old log house, surwounded by an e-wecwic fence.

I got to swing and go down da swide. Da men were building a new pwaypark – maybe it’ll be open tomowwoh.

After dinner, Mommy, Daddy and I pwayed dominoes. Mommy gabe me some medicine and a bwue band-aid for my mosquito bite on my arm.

After a couple a stories, it was off to bedtime. I stayed up behind da "force field," but I pwayed with my engines quietly and in da dark for at weast anoder hour.

Thursday, August 18, 2005 7:50 PM CDT

Hi Everybuddy!

It is so quiet around here, without our little boy. This was abundantly clear especially yesterday, on Dad's birthday. As we do on most weekends, we went back up to the cemetary last weekend, loaded with flowers from the yards. While there, yet again, we found a few more azalea blossoms -- and a few more buds that should be blossoming this week -- only at "Chris' Corner" (the crepe myrtle tree and 11 azaleas that we had planted near his stone), more than 5 months beyond the usual flowering season. We're really getting curious as to how long the bloom season is going to last.

As noted in the past, we remain very interested in any "Chris stories" that you'd like to share, whether they be something he did that you observed or how he may have impacted you in some manner. Meanwhile, the Pongojimmy updates continue below.

Joke of the day: Can you use green, pink and yellow all in one sentence? "When the phone goes green, green, I pink it up and say yellow."

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds. We are very sad to report that Michael, one of Chris' heroes, has joined Chris and so many other children.

Chris, we miss you!

Love,

Alison and Pat

21 May 97

I ate Fwuitee Pebbles for bwekfas’. It makes da milk pink.

Den Daddy and Mommy hooked up Mitzi to Dolwy, went to da dump station, then drove into da parking wot of Food Wion – Joyland, a suburb of Durham.

We all got into Mitzi and went into Durham, where we went on a volksmarch awound downtown and Duke University. I wooked around for Duke, but didn’t see him. We did see a big fweight twain, dough! Dat was neat and loud!

After walking, we went to a toy store acwoss da stweet from da parking wot. Dey had Sir Handel!! It’s da end of the “we don’t have Sir Handel” era. But . . . we still don’t have Duncan.

For wunch, I had a yummy but messy PB & J on a booberrwee bagel.

Back to Pongojimmy and on da road again toward Tanglewood campgwound near Winston-Salem, NC.

Monday, August 8, 2005 9:31 PM CDT

Hi Everybuddy!

There really isn't a whole lot to report since the last update. School began a few days ago for Chris' classmates, who are all beginning middle school. We still keep in touch with the family of his best friend, Greg. We can tell you that a published author has created a character in his next book in Chris' memory -- more about that though later as it gets closer to publication time. We don't want to ruin the surprise.

Once again, we again visited the cemetery last weekend. Once again, we found that there were still some pretty azalea blossoms at "Chris' Corner" (the crepe myrtle tree and 11 azaleas that we had planted near his stone), some 5 months beyond the usual flowering season.

We remain very interested in any "Chris stories" that you'd like to share, whether they be something he did that you observed or how he may have impacted you in some manner. Meanwhile, the Pongojimmy updates continue below.

Joke of the day: Here's an interesting quote that we think Chris would have laughed at: "Computers, in the future, may weigh no more than 1.5 tons" -- Popular Mechanics, forecasting the relentless march of science, 1949.

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds. Michael and his family really need your support right now.

Chris, we miss you!

Love,

Alison and Pat

20 May 97

We were suppohwst to go walking in Corolla, NC, the norf-most city on da Outer Banks. It also has a wighthouse and wild horses. But we didn’t do it bacuz it wooked wike rain – again.

By da time Mitzi was woaded up, it wooked a widdle bedder, so we went to Jockey’s Widge instead. It’s a huge beach! We walked barefoot up da sand mountain. I told Mommy that I didn’t have “bear feet,” I had “boy feet.”

After wunch in Pongojimmy, we stawted dwibing toward Raleigh, NC bacuz da wever just couldn’t be counted on. It was a good time for a nap.

We camped at Falls Lake Recreation Park (near Durham, NC). Not many people staying der. Madder a fact, we were da only ones at da pwaygwound. I see-sawed with Mommy and Daddy, slid down da weally big, weally swow swide, went hand-over-hand on da horizontal ladder. My hand swipped once and bacuz Mommy was holding me awound da middle, I fell ober backwards swowly and did a “hand-stand,” den came back up. Dat was fun!

Den we all walked to da beach at da wake. Der was seafowl considering how far we were from da ocean. I frew some wocks in da wader.

Back at da camper, we pwayed dominoes -- Mommy was winning a wot – after dinner. Then baf and bedtime.

Thursday, July 28, 2005 9:08 PM CDT

Hi Everybuddy!

Today is the 5th month anniversary of the day that Chris left us, and today, someone thought it appropriate to remind us of the words of an old, familiar song -- one that takes on a whole new context for us. "The Impossible Dream" follows, after the next installment of the
"Pongojimmy Journal," below.

Last weekend, we again visited the cemetery, where we found that the azaleas at "Chris' Corner" (the crepe myrtle tree and 11 azaleas that we had planted near his stone) were still blooming. They did look like they were nearing the end of this year's surprisingly long run though.

As we've mentioned before, we remain very interested in any "Chris stories" that you'd like to share, whether they be something he did that you observed or how he may have impacted you in some manner.

Joke of the day: Who drives all of his customers away? A taxi driver.

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds. Michael and his family really need your support right now.

Chris, we miss you!

Love,

Alison and Pat

19 May 97

We weft Gwamma and Gwampa’s house today. I said “bye-bye” and “tank you” to dem. But before we weft, I went walking wif Gwandpa up to da wake and back. After dat, I went walking with Gramma awound da outside yard. Out back, Gwamma suddenly gwabbed my arm and yanked me back (why do big people always do that??). Den she started yelwing for Gwampa, Mommy or Daddy – anybody! I didn’t know why and I got scared bacuz she seemed scared.

Den she showed me: it was a big bwack and gway snake on the gwass. Cool – but fwom a distance. I don’t know what to think about dem: dey wook kinda neat, but all of the big people stay back for some weason, so I will too.

It was hot (90 F), so I took a nap in Pongojimmy as Daddy dwove to Norf Carawina. We camped at Colington on da Outer Banks, cwose to some monument where the first airpwane took off. It wooked wike a sailboat to me.

THE IMPOSSIBLE DREAM

To dream the impossible dream
To fight the unbeatable foe
To bear with unbearable sorrow
To run where the brave dare not go
To right the unrightable wrong
To love pure and chaste from afar
To try when your arms are too weary
To reach the unreachable star

This is my quest
To follow that star
No matter how hopeless
No matter how far

To fight for the right
Without question or pause
To be willing to march into Hell
For a heavenly cause

And I know if I'll only be true
To this glorious quest
That my heart will lie peaceful and calm
When I'm laid to my rest

And the world will be better for this
That one man, scorned and covered with scars
Still strove with his last ounce of courage
To reach the unreachable star

Sunday, July 17, 2005 8:24 PM CDT

Hi Everybuddy!

Well, it must be time to send out another update; we didn't realize it had been so long since we last sent on. Things are about the same with us as we just try to take each day as it comes. Both Mom and Dad have had a couple of short business trips, in different directions and at different times. Still, in the meantime, we've had time to have some visitors here recently: Grandma and Grandpa, Uncle Tom and Cousin Jane (visiting from France), Cousin Ryan, and Uncle Brian. This has allowed us to make several more trips to the cemetery than we ordinarily would have. We've kept Chris, as well as the other two children in his section, supplied in flowers from our yard and our neighbors' yard. Chris also has a smiley face on a stick buried just in front of the stone; it allows the smile to be seen but the stick keeps it in place. So far, the groundskeeper hasn't confiscated it (not even in anticipation of Hurricane Dennis), but we'll see how long it stays there. Not to worry though, we have other smiles to bring up there, even if that one should disappear.

We are amazed that the azaleas at "Chris' Corner" (the crepe myrtle tree and 11 azaleas that we had planted near his stone) are still blooming. Here in Central Florida, azaleas bloom in late February/early March, so this is really amazing to still have blooms in mid-July. It's very nice to see, and is one of the things we check on whenever we visit -- how long will it continue to blossom.

We wanted to let you know that we have now learned that, between the two walks in Chris' memory held on May 14th this year, about $82,000 was raised toward neuroblastoma research, of which about $25,000 was specifically earmarked as being in Chris' memory. We are very, very grateful for all of this support, and thank you very much.

As we've mentioned before, we remain very interested in any "Chris stories" that you'd like to share, whether they be something he did that you observed or how he may have impacted you in some manner. We are grateful to those of you who have continued the quest to find some new stories, videos, pictures, etc., about Chris, some of which we had no clue even existed. Someday we hope to have many for people to view on Chris' own webpage on his own Internet domain. Thanks! Don't forget to check below for the next Pongojimmy updates; we've got two of them because it's been so long since we've done an update and because the next one was so short.

Joke of the day: Where do Abominable Snowmen go to dance? To Snow Balls.

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds. Both Michaels especially need your support right now.

Chris, we miss you!

Love,

Alison and Pat

28 Apr 97

It was still waining when I woke up. Der was a neat thing acwross da par-king wot – Mommy said it was a wolwer – coaster. But it was stilw waining. I couldn’t go check it out.

We packed up again and went to Fayetteville, NC. I tought we were going home, but was a different Fayetteville – or maybe a part of town I’ve never been before.

In any event, we went to the sandy par-king wot of Master Tow, the company that made Dolly. We had to buy an extra wheel for her – “just in case.”

I got to walk awound for a few minutes, but that got my shoes all messy. Mommy put me in the front seat in Pongojimmy while they moved Mitzi and Dolly around. What nonsense!

13 May 97

What fun I’ve had here at Gwampa and Gwamma’s house for da last couple of weeks. I start most days awound 7 a.m. – da sun has come up. I cwimb out of da twundle bed upstairs in Gwampa’s office, go down da first fwight of stairws, den push open da first door to da kitchen swowly -- I’m not yet sure dat it’s ok to come down.

Having made it dat far ok, I push open the 2nd door leading downstairs to da famiwy woom, where, invarwiabwy Gwamma and Gwampa are alwready waiting for me. So is Duffy. She barks loud – hurts my ears sometimes.

That’s the best room – my twain table is der, waiting for me. After pwaying for a few minutes, Gwampa takes me upstairs to de kitchen for bweakfas’, usualwe waffles (formerly “wakkles”) or cerweal and an orange or some gwapes. Sometimes I can “con” him into a choc’wat “milkshake” (chocolate milk).

Den Daddy comes down and we all go back down to pway with my engines and watch TV: Thomas, Barney, Sesame Street and Mr. Rogers. Mommy changes my diaper – always asking me if I wanna go potty, but most of da time I say, “ta-mah-woh.”

After dat, we usually go outside and pway on the swide (I know how to be wike “George of the Jungle”). Sometimes I push Mommy on the swing, and sometimes I squirt Gwamma with the squirt bottle.

One day, Daddy brought me a game of picture Dominoes. Wow. I love it! I can beat the pants off of everybody! The best part is “turn them ober!” and “mix ‘em up!”

Sometimes after having played outside, I’d get some "spimpers" in my hands. I don’t know how it happened. Mommy would hold me and Daddy would take a clean pin and dig them out. They said that b’cause I was bwave, I could have any color band-aid I want. I wike the gween ones.

(Side note: During these past two weeks, we’ve been on two volksmarches in Virginia Beach, 1 in Williamsburg, and to the Norfolk Zoo and Discovery Zone.)

Wednesday, June 29, 2005 9:06 PM CDT

Hi Everybuddy!

Not surprisingly, it's been quiet around here. Yesterday marked the 4th month since Chris left us. While Mom was out of town a couple of days ago, Dad made the trek to the cemetery, delivering more of the neighborhood roses up there. As summer comes into full swing, there were enough roses that Chris could share his with the other two children in his section. Chris' tree is full of new buds, so there may be more blossoms the next time we go to visit. Chris' happy face ball was still there. Dad learned that the sprinklers come on at 4 pm sharp.

As usual, we remain very interested in obtaining any "Chris stories" that you'd like to share, whether they be something he did that you observed or how he may have impacted you in some manner. We are grateful to those of you who have continued the quest to find some new stories, videos, pictures, etc., about Chris. We recently found an audiotape of Chris having called Dad at work, and with his very little boy voice, excitedly announcing that he went "potty" for the first time all by himself.

In keeping with our last update, you'll find below the 2nd entry from the "Pongojimmy Journal," which chronicles our cross-country RV trip from Chris' perspective as a 3 year old. As noted previously, it was written to try to capture his speech patterns at the time and what he found interesting as a toddler. As a result, the language style may be a little difficult to understand at first, at least until you get into the mindset of a 3 year old boy who adored Thomas the Tank Engine. These entries were not daily updates and were originally written to be able to help Chris remember this trip when he got older. Still, they do serve to give some idea of what Chris was like as a youngster. (By the way, "Mitzi" was Mom's car, while "Dolly" was the tow dolly that was hooked to the back of Pongojimmy in order to carry "Mitzi." The "force field" was the protective netting that we used to keep Chris from accidentally rolling out from his bed area, but also had quick release in case of emergency. Chris used to name everything back in that time period.)

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds.

Chris, we miss you!

Love,

Alison and Pat

27 Apr 97

It’s still waining, but it’s a wight dwizzle. Mommy and Daddy asked if I wanted to go on a walk to see a waterfall. Sure! Who wouldn’t?

So, we all piled into Mitzi and dwove abowt 30 miwles norf to Caesar’s Head State Park. It sure was a foggy drive. Because it was only a dwizzle, Mommy and Daddy said we could still go walking. “Walking” means that I mostly wide in a stwoller, which Mommy and Daddy take on a long walk called a volksmarch. Daddy usually pushes my stwoller while Mommy figures out which way we should go.

Dis time we went on a wough twail. It was weally wuf. I bounced ober the twee woots and wots of rocks, up and down on the twail.

By the time we got near da riber, da twail got bery wuf, and I had to get out of da stwoller. It was weally waining by then. I cwimbed ober wogs and down a wadder and den we were there – a swinging bwidge ober a small waterfall.

By den, I was cold and wet. Mommy hugged me to help me warm up. When we got back to the stwoller, Mommy and Daddy cobered me up wif a water-wesistant blankie. I felt much better. That was fun!

Dat afternoon, we drove on to a campgwound at Carowinds, NC. By den, it was still waining and dark. I was tired. I went right to sweep as soon as Mommy and Daddy could set up “the force field.”

Monday, June 20, 2005 9:10 PM CDT

Hi Everybuddy!

It was a very quiet Father's Day weekend here; with there being no Chris to help celebrate, spirits were dampened. We did go up and "celebrate" with him and dropped off two beautiful roses from a rose bush given in his memory by a special cousin and carefully nurtured by our neighbor (Mom and Dad just can't do roses). These were the first two roses that this bush has produced. The weather was beautiful so we walked throughout Chris' whole section today to "get to know" more of Chris' new "neighbors." We found yet another child, a thirteen year old girl whom we'll also start looking after. We'll make sure that some azaleas end up near her, too. Most of his new companions were in their seventies and eighties, with a few in their nineties and fifties. Fortunately, Chris always got along well with adults. We checked in on the baby, also. So, in this section, there are three children: eleven year old Chris, a thirteen year-old girl, and an infant girl.

Today, we left something else special near Chris' headstone: a happy face ball. It's about the size of a ping pong ball and fit neatly in a little hole in the ground at the base of the headstone. We're really not supposed to do, that but it is discreet (you can't see it unless you walk up to his headstone) and "sooooo Chris."

We remain very interested in obtaining any "Chris stories" that you'd like to share, whether they be something he did that you observed or how he may have impacted you in some manner. We are grateful to those of you who have continued the quest to find some new stories, videos, pictures, etc., about Chris, some of which we had no clue even existed. Someday we hope to have many for people to view on Chris' own webpage on his own Internet domain. Thanks!

Along those lines, we're also going to start sharing with you some of our memories from happier days. Below you will find a copy of the first entry of a journal that Mom kept on our cross-country trip in our RV, which was dubbed "Pongojimmy." Chris was only 3 years old at the time, so this predates any knowledge of his illness. Although Mom wrote it, it was intentionally written so as to try to capture his speech patterns at the time and what he found interesting as a toddler. As a result, the language style may be a little difficult to understand at first, at least until you get into the mindset of a 3 year old boy who adored Thomas the Tank Engine. These entries were not daily updates and were originally written to be able to help Chris remember this trip when he got older. Still, they do serve to give some idea of what Chris was like as a youngster. (By the way, "Mitzi" was Mom's car, while "Dolly" was the tow dolly that was hooked to the back of Pongojimmy in order to carry "Mitzi"; Chris used to name everything back in that time period.)

Joke of the day: Why did the dog go to the corner when the doorbell rang? It was a Boxer dog.

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds.

Chris, we miss you!

Love,

Alison and Pat

26 Apr 97

Today’s the big day! Today is the day we stahwrt da big trip Mommy and Daddy have been telwing me about.

They’d been carrywing on for weeks now, someding about “gowing on bacation,” and “how much fun it’s going to be.” Sounds good to me. Mommy and Daddy hab been doing nutping but work, work, work, and pwromising to pway, pway, pway – soon. But soon never comes. I don’t get it . . . Why work when you can pway . . . They keep carrywing on about da moving men taking our things away, and getting the house ready (I’m not sure what for).

Anyway, I’m weady to go. Pongojimmy told me that he’s weady to go. Finally Mommy and Daddy said that they’re ready to go. They wook tired, but happy to go.

Seems like it took foreber to go. It’s dwizzlwing outside and I’m stuck inside Pongojimmy. Daddy was mad and trying to do something with da air in da wheels. I don’t know what he means. I couldn’t even see because I’m stuck in da camper because of da wain.

After a while, Mommy turned on a series of Thomas movies, but by then I was bored.

After foreber, Mommy and Daddy said they were putting Mitzi on top of Dolly. Hmmm . . . that souwnds intewesting. But da torture continues . . . I’m not alwowed to watch because it’s waining.

Finally, we were all in our seats and Pongojimmy started to roll. By then, I was tired and bored beyond belief. Despite my best efforts, I slept.

We parked Pongojimmy at Rainbow RV Park in Greenville, SC. After we got settled, Mommy and Daddy decided that we had to wash our clothes. Now that was fun!

While dey were doing dat, I got to push the laundry carts on wheels around! Mommy put the soap and our rain jackets in one cart. That became my engine! I took it over to two other carts and coupled my “engine” to these “silly freight cars.” I coupled and uncoupled these cars, took them down the “main line” and on another “side track.” Mommy said, “no bumping.”

We had dinner at Sow Sun, a Chinese restaurant with a buffet that Mommy and Daddy really liked. I especially liked the big fish near the front door.

Wednesday, June 8, 2005 5:16 PM CDT

Hi Everybuddy!

We are still eagerly awaiting a time when missing life with Chris isn't so painful but aren't sure when that will ever happen. We know that people out there are still checking in on him (and us) and thinking about him, which does help us. As someone once said, "It isn't the duration of life that's important but the difference that the life has made." We know that Chris must have made quite a difference , not only in our own lives but those of others as well, based on those people who keep checking in.

We have just received a copy of Chris' fifth grade yearbook. His picture is notably absent on his class' page but he is at least mentioned. There is a picture of him on a special memorial page at the back of the book which has excerpts of his song, "The Yellow Blues." He was not forgotten there.

We visited Chris' gravesite twice in the past two weeks. One visit was on the day before Memorial Day as our warrior of many campaigns fought in a different kind of war than theirs. That day was for them, but Chris' area did benefit from the attention shown to the other veterans. Again, we were happy to see that someone beside ourselves continues to remember Chris with flowers periodically. There is a new picture on Chris' website that shows his new home and the new azalea beds. Again, we shared some of Chris' flowers with the baby who is lying so near to him, just as Chris would have done. On that visit, we also dropped off a rose from our neighbors, who are also the caretakers of a wonderful rose bush sent and planted in Chris' memory. Soon he will also have a tree planted at his church, hopefully in a location near to where he can hear the choir that he liked so much. The second cemetery visit was right after walking with our volksmarch club in a state park only a few miles from the cemetery. Thanks Alice!

Of a special note is the speech that a cancer survivor named Sebastian gave at the memorial walk in New York last month. It is as special as he is. He is an older friend to Chris' friend Simon. Dad knows that Chris and Sebastian would have been friends, too, had they had a chance to meet. The text is below. Beneath it you will also find the recomposed lyrics to another song dedicated to Chris.

We remain very interested in any "Chris stories" that you'd like to share, whether they be something he did that you observed or how he may have impacted you in some manner. We are grateful to those of you who have continued the quest to find some new stories, videos, pictures, etc., about Chris, some of which we had no clue even existed. Someday we hope to have many for people to view on Chris' own webpage on his own Internet domain. Thanks!

Joke of the day: How did Vikings send secret messages? By Norse Code.

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds.

Chris, we miss you!

Love,

Alison and Pat

Sebastian's Speech:

First of all, thank you. Thanks for everything you've done, and everything you're doing. Because people like you are here today, kids like me are still here. The money you've raised is going to help fund cutting-edge experimental treatments, the same kind that saved my life, the same kind that saved Simon's. Without those treatments, without fundraisers like these, it wouldn't be a matter of the odds being against us, against all these kids, because there wouldn't have been any odds. With them, though, there are odds, and they're getting better every day.

I'm not going to give you numbers and facts, I'm not going to try to win you over to our cause, because you already know why its our cause, why its so important that we fight this fight. What I am gonna to try and do, however, is remind you why, exactly, we're doing this. I'm gonna try to give you something to think about, right around mile 3, something to remind you that that wonderful ache and burn you're gonna have tomorrow is gonna be worth every painful second.

I know why I'm doing this.

I'm doing this so an 18 month old girl isn't up all night, every night, for months on end, crying in pain. I'm doing this so a 6 year-old doesn't have to ask his mom what metastasized and bone marrow mean. I'm doing this so a 7 year-old kid doesn't have to lie awake at night, and wonder, why me? We're doing this so an 8 year-old boy can be outside, rough housing, playing around, being a kid, instead of inside, stuck in a hospital, looking out of a window for weeks and weeks, wishing they could be doing something, anything¸ besides lying in bed. We're doing this so a 10 year-old kid doesn't have to think about death, so they don't have to stare it in the face every single day. We're doing this so an 11 year-old doesn't miss his first middle school dance because he's getting his first round of chemo, so a teenager can be out being stupid with their friends instead of wondering what their friends are doing, thinking about all the fun they're missing.

We're doing this so 12,000 kids a year can be outside living the best years of their lives instead of inside giving the best fight of their lives. We're doing this so 3,500 kids each year can be outside, alive. We're doing this because we know that if we can learn a lesson from these kids, if we can just not give up and if we keep on fighting, that cancer doesn't stand a chance.

Thank you.

Yet another song:

Song: Please Breath
Based on the Lyrics for Song: Breath
Artist/Band: Anna Nalick

Please Breath

8 AM and I call the parents with news
searching for words but they're words that I just cannot choose.
thinking what to say but tears just get into my way.
As we walk through the door we're met by sorrowful eyes
Now we know that the ward has been fully apprised
A favorite son has finally passed on his way.

Cause you can't ever go back
when you're fighting for life, there's so little help for you in your personal strife,
No one can find the rewind button for the world
So we just cradle your hands in our hands.
And plead, please breathe, Oh breathe, please breathe

He turned 11 this year on a lonely birthday
Seeking treatment in a hospital so very far away
Ain't been normal since maybe November of last year
Here in town you can tell he's been down for while
But my God it's so beautiful when the boy smiles
Wanna hold him but now I can't so I only sing about him

Cause you can't ever go back
when you're fighting for life, there's so little help for you in your personal strife,
No one can find the rewind button for the world
So we just cradle your hands in our hands.
And plead, please breathe, Oh breathe, please breathe

We pray there's a light at the end of this tunnel you're in because we know now that you will never come out
And these mistakes we've made
We can't make them again as there is no turning about

8 AM and we're unclear as to just what went wrong
Like so many kids who didn't last long but were all very strong your cancer can never again inflict on you pain.
We're so sad that you have now gone away and that we cannot be with you each day
But please know that we're always thinking about you.

Cause you can't ever go back
when you're fighting for life, there's so little help for you in your personal strife,
No one can find the rewind button for the world
Just nod if you understand... Please breathe,
just breathe, Oh breathe, please breathe
Oh breathe, please breathe
Oh breathe, please breathe

Wednesday, May 25, 2005 9:36 PM CDT

Hi Everybuddy!

It has been a very difficult week, in part because of the anniversaries contained in this week. Today is the sixth anniversary of Chris' initial diagnosis with cancer. Six years ago, we knew that Chris wasn't feeling well, but throughout that day, he was introduced to the Tampa clinic and All Childrens Hospital for a nightmare of which we had never before heard: neuroblastoma. Six years ago was the first of fourteen straight days inpatient, where we learned of this very aggressive cancer and witnessed the fast action by the medical team, who pulled Chris back from what was truly the brink of death right then. Six years ago, as he was being diagnosed, Chris was supposed to be sharing in a celebration with his friends at their graduation from preschool. That was only the beginning.

Over the past five "anniversaries," we have greeted this day with gratitude for Chris having been able to reach each such anniversary, as well as with some apprehension of what the future might hold for him. This anniversary is different. It is only three days before we recognize the third month anniversary of Chris' death. There remains here an enormous aching canyon left in his absence.

But there is also more than that canyon, even though it sometimes seems to be so huge that its opposite rim seems well beyond reach. There is more. There is our love for Chris, which continues unwavering to this day. Now there is a greater awareness of the core meaning of the text, "There are in the end three things that last: faith, hope and love, and the greatest of these is love." Our love remains. We had these three throughout Chris' ordeal as we tried to carry him as far as we could. Indeed, these three continue to this day, as we struggle to keep our eyes fixed on the future, when we hope to see him again. We have to believe that "love never fails."

Nonetheless, this is not at all easy. We can smile, but it simply is not the same without Chris dancing around here. This is not the same home it once was, when the "dogpiles" were so frequent. Although we are healthy, we sometimes feel that we have been "gutted" or that there is a headache which cannot be remedied with aspirin or Tylenol. Sometimes thinking about Chris can cause us to forget to take a breath. And yet it's exactly times like that when we recognize the true strength of Chris' indomitable spirit; he rarely felt this way, no matter what he faced.

There were some nice things this week that helped offset the pain of Chris' loss, which we believe he would have loved and appreciated. One of the fifth graders at Chris' school, April, was assigned to a different classroom than Chris and did not really know him. However, after hearing of Chris' story, April felt touched and wanted to do something as a memorial. She sold some of her personal possessions at a garage sale that she organized in order to raise money to purchase an engraved memorial paving brick. Mom had the pleasure of meeting April this morning to personally thank her for her selflessness. We were quite moved by her efforts and her family's support.

Yesterday, the school held its annual end-of-the-school-year award ceremony to honor students for their achievements. At the award ceremony, there were plenty of surprises. Other than seeing April's brick for Chris, we learned that the school's PTA had also purchased a brick in his memory as well as commissioned an artist to do a watercolor picture of a manatee family, again in Chris' honor. (The school's mascot is a manatee.) The inscription on the frame reads, "In memory of Christopher Becker Lake Magdalene Elementary 2005." We always thought that we couldn't have had Chris in a nicer school. There is a new picture on Chris' website that showcases these events.

Meanwhile, Dad is back involved in the world in that he now working as a consultant with a company of some excellent people. The good news is that he can work at home. The bad news is that he can work at home. For him, home holds many memories, sometimes difficult to face right now. It is the place where he and Chris often played, studied, fought cancer, and were often exiled to for long durations because of Chris' weakened immune system.

We intend to head to Chris' place on Memorial Day to visit our warrior of many campaigns. He was involved in many battles in the nation's almost thirty year proclaimed "War Against Cancer" and is now a casualty of that war. Even before Chris' first year of fighting ended, he became immersed in participating in the vanguard of fighters by his continual involvement in clinical trials of emerging therapies. We believe that these clinical trials allowed Chris to stay alive and maintain a decent quality of life, but he paid a heavy price. We were not able to realize our goal of keeping him healthy and happy long enough for someone to find a cure for neuroblastoma. Over the years, this Congressionally proclaimed "war" has been somewhat lacking in leadership, direction, priority, and/or funding. Chris was one of the many children who die as a result of cancer each year; pediatric cancer research only receives about 1 - 2f the annual cancer research budget, even though the lives saved could last another 70 or so years. It is our hope that research efforts redouble so that these children can have a chance to grow up.

We are still very interested in any "Chris stories" that you'd like to share, whether they be something he did that you observed or how he may have impacted you in some manner. We are grateful to those of you who have continued the quest to find some new stories, videos, pictures, etc. about Chris, some of which we had no clue even existed. Thanks!

Joke of the day: Why was the chicken afraid of the chicken? It was chicken.

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds.

Chris, we miss you!

Love,

Alison and Pat

Wednesday, May 18, 2005 7:36 PM CDT

Hi Everybuddy!

Last weekend was wonderful in that we were able to get together with some of Chris' supporters, both in Tampa and New York, while raising a good deal of money for neuroblastoma research. There are some walk pictures on Chris' website. It would have been more outstanding if Chris were able to see all of this effort. In that regard, it was bittersweet, particularly since this past week marked the first anniversary of the death of one of Chris' best friends, Allie. They were the closest of friends during their treatments in New York.

Both walks were blessed with beautiful weather, even though the New York forecast was for rainy weather. There appeared to be about 100 walkers here in Tampa, many of them were new to the volksmarching experience. Mom has heard from some of them that they liked the experience of simply walking and exploring parts of the city that they had never visited before. Meanwhile, in Central Park, there were probably between 150 to 200 walkers, many of them high school students. Many of the "founders" of the New York walk were present as it was the fifth annual "Kids Walk for Kids with Cancer" an event organized by these students. There were numerous speakers, almost all of whom were kids; many were the walk's founders and its sponsor. Two speakers in particular were very impressive. One was an 8 year old girl who, on her own initiative, has raised funds for this cause for three years. The other particularly impressive speaker was a young cancer survivor (another friend of Chris' friend, Simon). We hope to publish the text of his speech as soon as we receive a copy of it. He is a high school student and a very compelling speaker (and nice guy). It appears that the high school students are coming close to this year's fund raising goal but are not there yet. Donations will be accepted until June. If you would like to help and make a contribution, please send a check in any amount, payable to Hope Street Kids, to Sophie Staples-Vangel, 163 Garfield Place, Brooklyn, NY 11215. Please e-mail Sophie at: sophsv@mac.com if you want more information. Dad can attest to the sincere enthusiasm of these students in their desire to raise funds for research. We will let you know the total amounts raised by both walks as soon as we learn of them.

The Tampa Tribune did run a human interest feature article last Thursday on Chris' legacy of touching so many lives in his short lifetime by trying to capture some of the essence of what made Chris so special. Thank you to all of you who were interviewed for the article.

As we've mentioned before, we remain very interested in any "Chris stories" that you'd like to share, whether they be something he did that you observed or how he may have impacted you in some manner. Some that we've received have brought back some great memories. We are also particularly looking for any video or audio recordings of Chris anyone may have; we have very little in terms of those kinds of recordings and are looking for anything that may still exist. Along those lines though, we were very happy to have discovered an audiotape of Chris singing and joking, obviously in a good mood while at the hospital. We laughed and cried as we listened in on our son's obvious joy and playfulness; it sometimes seemed like he was just in the next room, but then reality set in. If anyone knows of any others, we are very interested in learning of them.

Joke of the day: Why did the boy sleep with a ruler? Because he wanted to check how long he slept.

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds. Please especially remember both Michaels now in your prayers.

Chris, we miss you!

Love,

Alison and Pat

Monday, May 9, 2005 8:30 PM CDT

Hi Everybuddy!

We managed to get through Mother's Day, painful though it was since the reason for the day's celebration in this household could not join us for the "celebration." Mom received a special "Mom" frame that has places for three of Chris' photos (including some cute pictures). Dad and Chris had been looking for something like it for years. Ironically, Dad found the frame just after Chris died.

After Mass (which was difficult in itself since an 8 year old girl who was to have made her First Holy Communion had just passed away in a swimming pool accident), we took a drive up to the cemetery. There, we were somewhat surprised to learn that his section of the cemetery is close to being filled to capacity, perhaps by the end of June. It is beginning to look pretty nice though. Mom thought that the groundskeeper did an excellent job with Chris memorial crepe myrtle and azaleas. In fact, she was pleasantly surprised to find that Chris' azaleas were in bloom (in Florida, they bloom in early March, so this is very late in the season); they are a beautiful deep red. The cemetery administrators have also approved the donation of more azaleas that were made available (thanks). The nursery will be sending 21 more azaleas to be placed in other locations in Section 405, but especially near the gravesite of the infant who is buried near Chris. We also learned that Chris is just a few spaces down from a friend of our neighbors. It is indeed a small world.

We were accompanied to the cemetery by our friend Cate, who also joined us for a movie and then dinner. The movie "Fever Pitch" was fun and dinner was equally good despite Chris not being there making everyone laugh. We can imagine some antics that he might have pulled.

During the weekend, Dad had the bittersweet duty in helping to plant a memorial tree in honor of one of Chris' friends, "Princess Stephanie." It too is a crepe myrtle in her favorite color. Her dad tended to the plant with the utmost of care, so we hope to go visit it when it blooms.

We have no new information concerning the upcoming Tampa Tribune article about Chris and the walk that our volksmarch club is sponsoring in his memory to raise for pediatric cancer research, except that some other people have also been interviewed. It should appear in the Thursday, May 12th northeast edition of the Tribune. We hope that it encourages people to walk this weekend. On that note, Mom and Dad have been distributing some of the flyers that the volksmarch club put together. The weather forecast looks good for both here and in Central Park, New York City. The latter is of particular interest to Dad since he will be leaving for New York on Friday. He will be there to walk with all those kids who have done so much to raise money to fund research for a cure for neuroblastoma. Meanwhile, Mom will be walking on the walk here in Tampa on Saturday.

Those of you who are from the Tampa Bay area, our Volksmarch club (hiking club) will be hosting a walk in Chris' memory. It will be a CureSearch "Reach the Day" walk. CureSearch raises money for the National Children's Cancer Foundation. The walk will take place on May 14, 2005, starting at 9:00 a.m. at the main fountain area in beautiful Old Hyde Park Village (right here in Tampa). There will be a small fee for adults, but kids can walk for free. Parking will be free. We've been told that some of his schoolmates and fellow scouts may be there. Here is the URL for the walk http://home.tampabay.rr.com/sandpipers/sndpiper.html.

For Chris' New York "family," Chris will be a "poster child" for a walk in New York on the same day. The fifth Annual "Kids Walk for Kids with Cancer" an event organized by New York City school kids to help kids with cancer, will take place in Central Park on Saturday, May 14, at 1:00 p.m. Walkers will gather at 12:30 p.m. across the Park Drive from and just north of Tavern on the Green. At 1:00 p.m., there will be a brief program of remarks by student organizers and young cancer survivors, followed at 1:30 p.m. by the 4.5 mile walk around upper Central Park to benefit Hope Street Kids Pediatric Research Program (http://www.hopestreetkids.org/). Proceeds from the walk will go to support an annual research grant at Memorial Sloan-Kettering Cancer Center in New York City (in the past four years these students have raised over $225,000 for pediatric cancer research). If you would like to make a contribution, please send a check in any amount, payable to Hope Street Kids, to Sophie Staples-Vangel, 163 Garfield Place, Brooklyn, NY 11215. Please e-mail Sophie at: sophsv@mac.com if you want more information. If you are near New York City, please come walk in memory of Chris -- and all the others who have fought bravely against insurmountable odds.

Those of you who may have watched the Kentucky Derby this past weekend, you may have noticed that one of the horses was named "Afleet Alex." Although he did not win the Derby, he has won the hearts of neuroblastoma families worldwide, and will be cheered on for his future races. The owner learned of "Alex's Lemonade Stand," a neuroblastoma research fund-raising event started by a little girl named Alex who died last year of this same terrible disease. Before she passed away at the age of 8, then 4 year old Alex wanted to do something to help find a cure for neuroblastoma. Her efforts started with a lemonade stand. That in turn grew into many such lemonade stands, and with the help of corporate sponsorship, her dream of raising $1 million was realized last year, a few months after her death. Fortunately, the lemonade stand efforts are continuing in order to reach a new goal of $5 million. "Afleet Alex" is helping, too. Feel free to read more at www.alexslemonade.com and www.afleetalex.com.

We are still very interested in any "Chris stories" that you'd like to share, whether they be something he did that you observed or how he may have impacted you in some manner. Some that we've received have brought back some great memories. We are also particularly looking for any video or audio recordings of Chris anyone may have; we have very little in terms of those kinds of recordings and are looking for anything that may still exist.

Joke of the day: Doctor: Nurse, how is that little girl doing who swallowed ten quarters last night? Nurse: No change yet.

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds. Michael in particular needs your prayers now.

Chris, we miss you!

Love,

Alison and Pat

Tuesday, May 3, 2005 8:12 PM CDT

Hi Everybuddy!

There have been a lot of things happening in regard to Chris' memory. Between the nursery with which we are dealing and the wonderful administrators and groundskeepers of the Florida National Cemetery, things in "Chris' Corner" are looking brighter. The eleven red azaleas have been placed in a semi circle behind Chris' white crepe myrtle tree. There is a new picture of them in the "photo" section of his website. Next spring, right about the time of year when he died, his "Corner" should be beautiful when all is in bloom. Our next effort will be to donate some more azaleas, to be placed in various places in his cemetery section (405), particularly near the grave of an infant who is not too far away from Chris. Dad will be working with the cemetery staff this week about that.

Several people have dedicated their recent efforts on remembering Chris in one way or another. We know that the Virginia Military Institute's triathlon team put on a good show during a recent competition as they wore Chris pins; Cousin Sean had Chris' name written on his shoulder (like where they write their competitor numbers for the swim component of the triathlon). Also, our friend Becca (a cancer survivor herself) dedicated her efforts to Chris' memory in the local St. Anthony's triathlon. It was her first such event, and we were there to cheer her on. We were quite proud of her. Chris liked to swim and bike, but he wasn't big on running. In addition, there were several other families who, unbeknownst to us, either dedicated their activity in this year's American Cancer Society "Relay for Life" or at least lit a luminary in his honor in the associated nighttime ceremony. We certainly are grateful to everyone who is continuing to keep Chris in their thoughts and deeds.

Last night, Mom and Dad were interviewed by the Tampa Tribune newspaper for an upcoming article about Chris, his impact on people, and the volkmarch walk that our club (Suncoast Sandpipers) will be sponsoring in his memory to raise for pediatric cancer research. The article should appear in the Thursday, May 12th Northeast edition of the Tampa Tribune. She will be contacting some of Chris' supporters
soon to help her assess the impact that Chris had made on people, some of whom had never personally met Chris.

Around our home, Chris' things have almost been migrated back into his room. We still have some photos to find in order to place on the walls of his room to help give some insight at least to some of the things Chris did, accomplished, or that are on display. His room cannot even begin to describe Chris and the impact that he made on the people he touched, but it's a start.

We are still very interested in receiving any "Chris stories" that you'd like to share, whether they be something he did, that you observed or how he may have impacted you in some manner. Some that we've received have brought back some great memories. We are also particularly looking for any video or audio recordings of Chris that anyone may have; we have very little in terms of those kinds of recordings and are looking for anything that may still exist.

As previously mentioned, this month is a particularly special one for remembering Chris this year. Right now, Mom and Dad are trying to figure out whether one of us will represent Chris by walking in Tampa while the other one similarly walks on his behalf in Central Park. We have Chris' extended "family members" reporting in that they will be walking in both locations on May 14th, so it only seems right that at least one of us should be there. We'll see what we can do.

For those of you who are from the Tampa Bay area, our Volksmarch club (hiking club) will be hosting a walk in Chris' memory. It will be a CureSearch "Reach the Day" walk. CureSearch raises money for the National Children's Cancer Foundation. The walk will take place on May 14, 2005, starting at 9:00 a.m. at the main fountain area in beautiful Old Hyde Park Village (right here in Tampa). There will be a small fee for adults, but kids can walk for free. Parking will be free. We've been told that some of his schoolmates and fellow scouts may be there. Here is the URL for the walk http://home.tampabay.rr.com/sandpipers/sndpiper.html. Chris was always fun on a volksmarch, and he, Mom and Dad had some great discussions. Often, Chris was in his rough terrain stroller either because he was very young (he was three weeks old when he participated in his first "walk") or because his stamina was taxed by the extent of his illness and/or the grueling treatment. Nonetheless, Chris "walked" nearly 2000 kilometers (or about 1200 miles, on over 190 walks, in each of the fifty states, as well as in Canada and Mexico. We cannot tell you how many playgrounds he played in during these walks; stopping for play breaks was a family rule. We all had great fun in all types of terrain.

For Chris' New York "family," he will be a "poster child" for a walk in New York on the same day. The fifth Annual "Kids Walk for Kids with Cancer" an event organized by New York City school kids to help kids with cancer, will take place in Central Park on Saturday, May 14, at 1:00 p.m. Walkers will gather at 12:30 p.m. across the Park Drive from and just north of Tavern on the Green. At 1:00 p.m., there will be a brief program of remarks by student organizers and young cancer survivors, followed at 1:30 p.m. by the 4.5 mile walk around upper Central Park to benefit Hope Street Kids Pediatric Research Program (http://www.hopestreetkids.org). Proceeds from the walk will go to support an annual research grant at Memorial Sloan-Kettering Cancer Center in New York City (in the past four years, these students have raised over $225,000 for pediatric cancer research). This year's walkers are coming from the following New York schools: Packer-Collegiate Institute, Trinity School, Spence School, Calhoun School, St. Ann's School, P.S. 107, Lab School, Freehold H.S., as well as students from Chapin School, Collegiate School, Dalton School, Berkeley-Carroll School, Friends Seminary, Stuyvesant High School, La Guardia Performing Arts, and Ridgewood H.S. They consider this a "small" walk (about 200 expected walkers), but those walkers will be full of determination to help children with cancer. If you would like to make a contribution, please send a check in any amount, payable to Hope Street Kids, to Sophie Staples-Vangel, 163 Garfield Place, Brooklyn, NY 11215. Please e-mail Sophie at: sophsv@mac.com if you want more information. If you are near New York City, please come and walk in memory of Chris -- and all the others who have fought bravely against insurmountable odds.

You'll find below a couple of songs that we've modified to "fit" Chris' situation. We think that he personified the first one. It's a small tribute to our now silent lyricist.

Joke of the day: What do planets read? Comet books.

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds.

Chris, we miss you!

Love,

Alison and Pat

Song: He Chose to Dance
Based on the Lyrics for Song: I Hope You Dance
Artist/Band: Lee Ann Womack

He Chose to Dance

He never lost faith when his life was torn asunder.
He chose to beat his cancer but always kept his childlike wonder
Ever careful never to take a single breath for granted
God made sure that he was rarely empty handed
He loved to laugh and play and was forever hopin'.
And whenever one door closed, one more seemed to open
He always gave his fate a fighting chance

and when he got the choice to sit it out or dance

He chose to dance
He chose to dance

Through all the years he always went the distance
Never able to take the path of least resistance
Treatment might mean taking chances but they were worth taking
Hoping for a cure might have been a mistake but it was worth making
He didn't let the chance of death make him bitter
When he might have given up, he'd reconsider
He gave the Lord above more than just a passing glance.

And when he got the choice to sit it out or dance

He chose to dance
(Living life is a choice you make a day at a time)
He chose to dance
(and if you're really strong)
He chose to dance
(You'll be like him)
(and choose to see the good in each day)
He chose to dance
(instead of what went wrong)

He loved to laugh and play and was forever hopin'.
And whenever one door closed, one more seemed to open
He always gave his fate a fighting chance

and when he got the choice to sit it out or dance

He danced
He chose to dance
He chose to dance
(Living life is a choice you make a day at a time)
He chose to dance
(and if you're really strong)
He chose to dance
(You'll be like him)
(and chose to see the good in each day)
He chose to dance
(instead of what went wrong)

(Be like him)
(and choose to see the good in each day)
(instead of what went wrong)

and another one

Song: Chris' Angel Lyrics
Artist: Sarah McLachlan
Based on the Song: Angel Lyrics

You spent half of your lifetime just waiting for a chance
For a cure that'll make you OK
There was always some reason that it's still not here today
And the doctors don't know what to say
You look for a distraction or a beautiful release
But we hoped that you wouldn't go away
And now we're empty and weightless and doubt
that we'll find some peace in the night

In the arms of the Angel far away from here
From this dark, cold hospital room, and the endless suffering that was near
You are pulled from the wreckage of your short life here
Now in the arms of the Angel; may you find some comfort and peace

So tired of the many treatments, and everyone you tried
Never kept your sickness at bay
But you kept on living, kept dancing to the songs
Ever hopeful that there was a way
It didn't make a difference, trying yet one more time
Yet you always tried to believe
That for all of the madness, pain, loneliness, and sadness
Would free you from your disease

In the arms of the Angel far away from here
From this dark, cold hospital room, and the endless suffering that was near
You are pulled from the wreckage of your short life here
Now in the arms of the Angel; may you find some comfort and peace

Now in the arms of the Angel; may you find some comfort and peace

Saturday, April 23, 2005 9:07 PM CDT

Hi Everybuddy!

The administrators of the Florida National Cemetery initially approved our request to place a park bench dedicated to "W.W.II Veterans" in the area affectionately known to us as "Chris' Corner," but then later disapproved it (it had been approved in error) since a bench dedicated to group of people could only be placed along its beautiful memorial trail (not close to Chris). Although disappointed, we understand the decision. We are happy though that we are able to donate eleven red azaleas, which will be placed in the woodline on either side of "Chris' tree" (the crepe myrtle tree). Eleven represents Chris' age when he departed this earthly life and red was his favorite color. We can't wait to see all of this in bloom next spring.

Chris left an enormously huge vacuum that seemingly cannot be filled. It often seems like it rains every day. Many times it feels like a heavy downpour of grief because we miss him so much. Once in a while though, there is a feeling that there must have been some purpose to all of this, even if we can't see it right now. Chris brought so much joy to us and to so many people, and he brought people together from many parts of the country (and others from around the world). There must be a purpose to all of this. It is our shattered hearts that are so heavy with the loneliness of missing our boy. But Chris is safer and happier now than ever; it is we here on earth who feel these pangs. He certainly remains in our thoughts
constantly.

One of Chris' unfinished tasks was completed this week. Over the course of the past year or two, he had nominated one of his nurses for the hospital's Employee of the Month award many times, even though most of those attempts were unsuccessful. The last nomination attempt was successful though. This nurse was appropriately selected as the April 2005 Employee of the Month. We are so happy for her. We are proud of her and all of Chris' caretakers over the years. There must have been a reason that Chris enjoyed most of his hospital and clinic visits. He taught many people, including other patients, their parents and even staff members, that there is joy and fun to be found, even during tough times like bone marrow transplants.

Tomorrow (Sunday, April 24) is a big day. Our (including Chris) friend Rebecca (the "athlete") will be participating in the St. Anthony's triathlon. The weather should be beautiful for her efforts. Supporters are always welcome and encouraged to come cheer her on. She has been training very hard for this triathlon. For those of you who are able and willing to watch Rebecca at this event, please get there very early. The race starts at 7:00 a.m., but Rebecca's wave doesn't start until 8:50 a.m. We will try to post a map of the event on Chris' webpage so that you can come out and cheer her on. One of the many reasons Rebecca has undertaken this triathlon is to honor some really wonderful people who have been so affected by cancer in their lives, particularly one of her friends and our very own Chris Becker, who "taught her much about determination and strength." Rebecca herself is a survivor.

Speaking of triathlons, Chris was also remembered recently by the triathlon team at Virginia Military Institute (VMI), where Chris' cousin Sean attends and is a member of that team. He sent us back pictures of the team wearing smiley face pins and of Sean with the name "Chris" penned on his arm (well, we hope that it's not a tattoo -- but who can tell).

We are still very interested in any "Chris stories" that you'd like to share, whether they be something he did that you observed or how he may have impacted you in some manner. We are also particularly looking for any video or audio recordings of Chris anyone may have; we have very little in terms of those kinds of recordings and are looking for anything that may still exist.

As noted before, please remember that May is a special month for remembering Chris this year. Those of you who are from the Tampa Bay area, our Volksmarch club (hiking club) will be hosting a walk in Chris' memory. It will be a CureSearch "Reach the Day" walk. CureSearch raises money for the National Children's Cancer Foundation. The walk will take place on May 14, 2005, starting at 9:00 a.m. at the main fountain area in beautiful Old Hyde Park Village (right here in Tampa). There will be a small fee for adults, but kids can walk for free. Parking will be free. We've been told that some of his schoolmates and fellow scouts may be there. Here is the URL for the walk: http://home.tampabay.rr.com/sandpipers/sndpiper.html

For Chris' New York "family," Chris will be a "poster child" for a walk in New York on the same day. The fifth Annual "Kids Walk for Kids with Cancer" an event organized by New York City school kids to help kids with cancer, will take place in Central Park on Saturday, May 14, at 1:00 p.m. Walkers will gather at 12:30 p.m. across the Park Drive from and just north of Tavern on the Green. At 1:00 p.m., there will be a brief program of remarks by student organizers and young cancer survivors, followed at 1:30 p.m. by the 4.5 mile walk around upper Central Park to benefit Hope Street Kids Pediatric Research Program (http://www.hopestreetkids.org/). Proceeds from the walk will go to support an annual research grant at Memorial Sloan-Kettering Cancer Center in New York City (in the past four years these students have raised over $225,000 for pediatric cancer research). This year's walkers are coming from the following New York schools: Packer-Collegiate Institute, Trinity School, Spence School, Calhoun School, St. Ann’s School, P.S. 107, Lab School, Freehold H.S., as well as students from Chapin School, Collegiate School, Dalton School, Berkeley-Carroll School, Friends Seminary, Stuyvesant High School, La Guardia Performing Arts, and Ridgewood H.S. They consider this a "small" walk (about 200 expected walkers), but those walkers will be full of determination to help children with cancer. If you would like to make a contribution, please send a check in any amount, payable to “Hope Street Kids,” to Sophie Staples-Vangel, 163 Garfield Place, Brooklyn, NY 11215. Please e-mail Sophie at: sophsv@mac.com if you want more information. If you are near New York City, please come walk in memory of Chris -- and all the others who have “fought bravely against insurmountable odds.”

Joke of the day: How do you get cool music? Put your CDs in the fridge!

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds.

Chris, we miss you!

Love,

Alison and Pat

Monday, April 18, 2005 8:47 PM CDT

Hi Everybuddy!

When asked how is it going, we often feel like replying honestly that today was sad but most have been worse. Yet, things keep moving on. Chris' restyled room is nearly complete and has had its first visitors, including Greg along with his mom and dad. Our house looks much neater than it previously did, what with only Genie as the resident "mess-maker." It actually is beginning to look quite neat, but also pales in its appearance as a "home" without Chris' stuff scattered about in different rooms and without Chris settling in one place or another from time-to-time.

Since our last update, we have requested to place a park bench dedicated to "W.W.II veterans" and eleven azaleas near Chris' gravesite, but so far, there has been no reply from the cemetery. We'll let you know what we learn.

The big news is that on this coming weekend, our friend Rebecca (the "athlete") will be participating in the St. Anthony's triathlon. Supporters are always welcome to cheer her on. She has been training and planning and training. The St. Anthony's triathlon will take place on this Sunday, April 24. For those of you who are able and willing to watch Rebecca at this event, please get there very early. The race starts at 7:00 a.m., but Rebecca's wave doesn't start until 8:50 a.m. We will try to post a map of the event on Chris' webpage so that you can come out and cheer her on. One of the many reasons Rebecca has undertaken this triathlon is to honor some really wonderful people who have been so affected by cancer in their lives, particularly one of her friends and our very own Chris Becker, who "taught her much about determination and strength." Rebecca herself is a survivor.

We are still very interested in any "Chris stories" that you'd like to share, whether they be something he did that you observed or how he may have impacted you in some manner. We are also particularly looking for any video or audio recordings of Chris anyone may have; we have very little in terms of those kinds of recordings and are looking for anything that may still exist.

Please remember that May is a special month for remembering Chris this year. Those of you who are from the Tampa Bay area, our Volksmarch club (hiking club) will be hosting a walk in Chris' memory. It will be a CureSearch "Reach the Day" walk. CureSearch raises money for the National Children's Cancer Foundation. The walk will take place on May 14, 2005, starting at 9:00 a.m. at the main fountain area in beautiful Old Hyde Park Village (right here in Tampa). There will be a small fee for adults, but kids can walk for free. Parking will be free. We've been told that some of his schoolmates and fellow scouts may be there.

For Chris' New York "family," Chris will be a "poster child" for a walk in New York on the same day. The fifth Annual "Kids Walk for Kids with Cancer" an event organized by New York City school kids to help kids with cancer, will take place in Central Park on Saturday, May 14, at 1:00 p.m. Walkers will gather at 12:30 p.m. across the Park Drive from and just north of Tavern on the Green. At 1:00 p.m., there will be a brief program of remarks by student organizers and young cancer survivors, followed at 1:30 p.m. by the 4.5 mile walk around upper Central Park to benefit Hope Street Kids Pediatric Research Program (http://www.hopestreetkids.org/). Proceeds from the walk will go to support an annual research grant at Memorial Sloan-Kettering Cancer Center in New York City (in the past four years these students have raised over $225,000 for pediatric cancer research). This year's walkers are coming from the following New York schools: Packer-Collegiate Institute, Trinity School, Spence School, Calhoun School, St. Ann’s School, P.S. 107, Lab School, Freehold H.S., as well as students from Chapin School, Collegiate School, Dalton School, Berkeley-Carroll School, Friends Seminary, Stuyvesant High School, La Guardia Performing Arts, and Ridgewood H.S. They consider this a "small" walk (about 200 expected walkers), but those walkers will be full of determination to help children with cancer. If you would like to make a contribution, please send a check in any amount, payable to “Hope Street Kids,” to Sophie Staples-Vangel, 163 Garfield Place, Brooklyn, NY 11215. Please e-mail Sophie at: sophsv@mac.com if you want more information. If you are near New York City, please come walk in memory of Chris -- and all the others who have “fought bravely against insurmountable odds.”

Joke of the day: Why do cows have bells? Because their horns don't work!

We were truly saddened to learn that yet another young woman has lost her gallant fight with cancer. A beautiful (on the inside and outside) teenager whom we fondly called "Princess Stephanie" passed on last week. Chris would have been crushed since he thought that world of her. She always treated him with such consideration and the two were often "treatment buddies" at the Tampa Clinic. The world will miss her. We hope that Chris and friends are welcoming her now.

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds.

Chris, we miss you!

Love,

Alison and Pat

Sunday, April 10, 2005 9:01 PM CDT

Hi Everybuddy!

Well, we went on an outing for a few days beginning last weekend; it began up in southeastern Georgia (Jekyll Island) and continued down the eastern coast of Florida. Genie did quite well, keeping up on over fifty kilometers (about 30 miles) of volksmarches. We walked through the entire Jekyll Island, but also visited a nearby island before heading south to St. Augustine and Daytona Beach before reaching Titusville.

We sure missed Chris throughout all of these walks since he had always been there with us on these walks. It's hard to "turn off" the parenting button. We kept seeing things that Chris would have liked (such as a magic shop at Daytona) or joked or quipped about. He had such a quick wit. It was particularly difficult for us at the Kennedy Space Center since Chris loved the place and eventually wanted to go to the space camp. He was so good at video games and had gotten old enough to appreciate the science of space that we're sure that he would have had a good time. We were able to go to a section about the International Space Station that had not been previously been open to the public. Our timing was good enough to be able to see the Space Shuttle Discovery begin to "roll out" of the Vehicle Assembly Building.

We have stopped by the Florida National Cemetery a couple of times recently: once last Friday on our way out of town and once yesterday evening. Chris now has a headstone and the sod has just arrived. A couple of new photos have been added to Chris' webpage, where the cemetery information is. While the sod was brand new, we took the opportunity to bury a few smiley face pins with him: one for each one of us (including Genie, or course). Chris' new crepe myrtle tree has also already been planted, right where we wanted it at the end of Chris' row. We are now requesting to place a bench in honor of World War II veterans generally (in honor of Chris' new neighbors, since benches are reserved only for veterans, not family members) as well as eleven azaleas (with or without the bench) in the same vicinity. We'll let you know whether this request is granted in part or in full after we learn the answer. In the meantime, remember that Chris always enjoyed company, so if you're ever in the neighborhood, please stop by for a visit: Section 405, plot 828 (there is a map on Chris' webpage) at the Florida National Cemetery.

We are still very interested in any "Chris stories" that you'd like to share. We are also particularly looking for any video or audio recordings of Chris anyone may have; we have very little in terms of those kinds of recordings and are looking for anything that may still exist.

May is a special month for remembering Chris this year. Those of you who are from the Tampa Bay area, our Volksmarch club (hiking club) will be hosting a walk in Chris' memory. It will be a CureSearch "Reach the Day" walk. CureSearch raises money for the National Children's Cancer Foundation. The walk will take place on May 14, 2005, starting at 9:00 a.m. at the main fountain area in beautiful Old Hyde Park Village (right here in Tampa). There will be a small fee for adults, but kids can walk for free. Parking will be free. If that's not enough, Chris' New York friends can honor him as well. Chris will be the "poster child" for a walk in New York on the same day. The fifth Annual "Kids Walk for Kids with Cancer" will be held held in New York's Central Park, also on May 14, 2005, to benefit Hope Street Kids Pediatric Research Program (http://www.hopestreetkids.org/). Proceeds from the walk go to support an annual research grant at Memorial Sloan-Kettering Cancer Center in New York City. The walk was started by the sister of one of Chris' friends several years ago, before she was in high school. We'll provide more information in the future.

Joke of the day: (thinking of you, Genie): A dog went to a telegram office, took out a blank form and wrote: “Woof. Woof. Woof. Woof. Woof. Woof. Woof. Woof. Woof.” The clerk examined the paper and politely told the dog: “There are only nine words here. You could send another ‘Woof’ for the same price.” The dog replied, “But that would make no sense at all.”

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, Stephanie, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds.

Chris, we miss you!

Love,

Alison and Pat

Thursday, March 31, 2005 5:33 AM CST

Late entry from Wednesday, March 30, 2005:

Hi Everybuddy!

Chris has been gone for over a month. It has been one of the worst months that we could possibly imagine. All of the dread that we've felt over the preceding years in anticipation of scans pales in comparison with what we feel now that we know that we can't see, play and laugh with him in person every day. His absence is like a huge vacuum, having already sucked the best of what was here. Sometimes it's just hard to take a breath. We just try to keep focus on his new place in heaven, with the hope that we'll be able to join him someday. But for that thought, this heartbreak would be completely unbearable.

Chris' things are slowly getting to where they need to be; many of them will remain here, but others are going to other kids, families, friends, his school, or the clinic and hospital. Ronald (Chris' rough terrain stroller from New York) made its debut at the Tampa clinic, where it will hopefully provide a "good ride" to many more kids. Ronald dutifully carried Chris all around Manhattan for years and for a little while, also in Houston. It is an ideal way for a kid Chris' size to get around when he is "wheelchair phobic." Meanwhile, Chris' room has been repainted and redecorated with a bit of a tropical theme. Many of his mementos are in the process of returning to display in his room, but in new ways. Thus, although it's different, the feeling of Chris is still within his room.

An early morning Easter Sunday Mass was dedicated to Chris; it was particularly special in that Greg and his older brother acted as altar servers. Mom and Dad later joined Greg's family at their home for an Easter brunch. We were happy to see that Greg seemed to be doing pretty well, and was very comfortable wearing one of Chris' favorite t-shirts. We also continued an annual custom of dining with Les and his wife, Ingrid, although it was somewhat quieter than usual since Chris wasn't here to "steal" all of Les' hidden Easter eggs.

In other news, we learned today that our request to provide and dedicate a park bench and azaleas in Chris' honor was denied; that privilege is reserved solely for veterans, not family members. We understand that though. We will, however, be permitted to provide a white crepe myrtle tree, which will be located near Chris' burial site. In fact, it is expected to be delivered to the cemetery tomorrow. As we've mentioned before, Chris new home is in Section 405, plot 828 (there is a map on Chris' webpage) at the Florida National Cemetery. He always loved company, so please don't hesitate to visit.

We enjoyed dining tonight with a couple whom we met at the hospital in New York a few years ago: the parents of one of Chris' younger friends, Cameron. Cameron was a wonderful child who, Chris always thought, was "so cute." Like Chris, Cameron was in New York for neuroblastoma treatment, but was actually from Wisconsin. We truly appreciated being able to visit with them tonight.

We'd like to thank all of the people who have checked in with us and brought food. It has been a real help and pleasure. So, it's been very nice to have you check up on us, and for you to continue to share your favorite "Chris stories." We are also particularly looking for any video or audio recordings of Chris anyone may have. Progress is being made concerning a new website that will be linked to Chris' CaringBridge website; this new one will have a great deal of Chris photos, stories, and songs. It will take some time before it becomes a reality, but we'll keep you posted and do hope that you'll like it when it is ready.

For everyone in the Tampa Bay area (or needs an excuse to come visit here), our Volksmarch club (hiking club) will be hosting a walk in Chris memory. It will be a CureSearch "Reach the Day" walk. CureSearch raises money for the National Children's Cancer Foundation. The walk will take place on May 14, 2005, starting at 9:00 a.m. at the main fountain area in beautiful Old Hyde Park Village (right here in Tampa). There will be a small fee for adults, but kids can walk for free. Parking will be free. Many members of the club came to Chris' visitation, funeral, or burial; they are special folks, just like the rest of his friends.

Joke of the day: How can you keep from getting a sharp pain in your eye when you drink chocolate milk? Take the spoon out of the glass.

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, Stephanie, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds.

Chris, we miss you!

Love,

Alison and Pat

Sunday, March 20, 2005 8:52 PM CST

Hi Everybuddy!

It's been another very difficult week without our boy. Things just don't seem very exciting without getting Chris' slant on things, or hearing his voice (even when singing badly in the shower), or listening to his laughter. We really, really miss him.

There was a lot going on in this week with respect to Chris' things. In keeping with Chris' practice, a good deal of his things have been already/or are in the process of being moved on to family, friends, the clinic and hospital, and his school. His tastes were so diverse that all sorts of people will benefit from his generosity. We think that he'd like what's going on, too.

This past Friday evening, our church's choir performed a superb rendition of "The Passion of Jesus Chris." Through the beautiful music, a narrator and chorus, souls were touched. Chris would have liked it, too. The performance was dedicated to Chris' memory. Thanks so much.

We enjoyed a wonderful visit from one of our New York friends. Her son was often in treatment alongside Chris. One of the high points of her visit was a trip to Mel's Hot Dogs, which she enjoyed immensely. We think that she'll eventually get to do the taste comparison between Mel's and Nathan's Hot Dogs on Coney Island. She also accompanied us to where Chris is buried. He is now totally surrounded by several veterans. The immediate area still hasn't been sodded yet but has been prepared for the sod to be laid (sod is being laid in the row immediately in front of Chris' row). Chris doesn't have a headstone yet, but that will take a few more weeks. We forgot to tell you last week that underneath the personal data information on his headstone will be a personal tribute: "Our kind brave fun-loving son." While in the area, we reconnoitered the location where we'd like a bench and perhaps some azaleas placed in Chris' memory. We have to make the written request first, which may or may not be granted based on whether anyone else had requested that location and where the irrigation lines may be, but we hope to be able to do this. It won't bring Chris back to us, but it may provide a bit of comfort at his new "home." Chris is in Section 405, plot 828 (there is a map on Chris' webpage) at the Florida National Cemetery. He always loved company, so please don't hesitate to visit.

We'd like to thank all of the people who have checked in with us and brought food. It has been a real help and pleasure. There are times when we are doing reasonably ok under the circumstances, but there are other times when Chris' exuberance for life is sorely missed. So, it's been very nice to have you check up on us, and for you to continue to share your favorite "Chris stories."

For everyone in the Tampa Bay area (or needs an excuse to come visit here), our Volksmarch club (hiking club) will be hosting a walk in Chris memory. It will be a CureSearch "Reach the Day" walk. CureSearch raises money for the National Children's Cancer Foundation. It will take place on May 14, 2005, starting at 9:00 a.m. at the main fountain area in beautiful Old Hyde Park Village (right here in Tampa). There will be a small fee for adults, but kids can walk for free. Parking will be free. Many members of the club came to Chris' visitation, funeral, or burial; they are special folks, just like the rest of his friends.

Joke of the day: What do you call 10,000 strawberries squeezing through a doorway? Strawberry jam.

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, Stephanie, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds.

Chris, we miss you!

Love,

Alison and Pat

Monday, March 14, 2005 7:50 PM CST

Hi Everybuddy!

It was a month ago today that Chris and Pat spent their last day at the Tampa clinic before going to the hospital for what ended up being the very last time. We thought that it would be a simple overnight hospital stay, but as usual, were prepared for a longer one. Well, things changed.

It has been very difficult for us these past two weeks, but as oft has been the case over these last nearly six years, many people have come through to help -- sometimes from very unexpected quarters. Our eternal thanks. But we sure do miss our boy. Our world just isn't the same.

We went walking yesterday on a "volksmarch" (10 km walk) not too far from where Chris is buried, so we stopped by for a visit. He is surrounded by several veterans, so we know that he's in good company. The immediate area still hasn't been sodded yet (it will be done in the not too distant future, after several more rows are formed). Chris doesn't have a headstone yet, just a little card encased in plastic that has his name, when he died, and when he was buried and became part of the cemetery's
"family." The soil is almost all sand so we were able to see the deer hoofprints all around and across his grave (we had already been informed that they're known to eat the real flowers left on the gravesites). Chris would have liked that and thought it was funny; he liked animals and he and Dad had been looking for some good tracks of which to make plaster casts for scouting. We drew a happy face in the sand at his gravesite. We hope to be able to provide that section of the cemetery with a bench and perhaps some azaleas in the near future. Chris is in Section 405, plot 828 (we'll post a map soon on Chris' webpage). He always loved company, so please don't hesitate to visit.

Meanwhile, we're working on several major projects. One is to collect and sort through all of the wonderful things that Chris collected over the years, many of which will be moved on to other children shortly. Chris always thought that if you had a toy that you didn't play with anymore, there was always a kid to be found who would love to do so. We're also going through the many photo albums that we have. With the help of some friends, they'll be eventually become available to view on the Internet. There are a lot of pictures as Chris had been able to do quite a bit in his little time with us. Many are from his 1997
"North American Tour." If we're lucky, there will be other things besides photos (such as a journal of that RV road trip from Chris' then 3 year old's perspective) It'll take a little while to put together (many of these photos need to be scanned), but we'll keep y'all posted. Please keep checking back from time to time and watch it grow.

We got some good news that Chris would have been happy about: Mom was recently promoted to the rank of Lieutenant Colonel in the Army Reserve. Mom would have liked to have celebrated with one of Chris' "HKTs" (hug, kiss and tickle). Some other good news is that our friend, Becca, will be participating in the St. Anthony's triathlon on April 24, 2005, which will raise money for the Leukemia and Lymphoma Society. Herself a young breast cancer survivor, Becca will dedicate her efforts in this Olympic length (1500 meter swim, 24.8 mile bike race and 6.2 mile run) triathlon to Chris' memory. Please feel free to visit her webpage about the event (http://www.active.com/donations/fundraise_public.cfm?key=tntscflRBeddow), and feel free to join us on April 24th in St. Petersburg (Vinoy Basin) to cheer her on.

As you may recall, Chris had asked that the jokes continue. So, in his honor, we'll continue his fine tradition anytime that we post an update on the goings-on.

Joke of the day: Why did the king draw straight lines? Because he was the ruler.

Thank you also remembering Chris in your prayers and for his friends who continue to need your prayer support for their health: Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, Stephanie, and all of the young cancer survivors, along with those others, like Chris, who have fought bravely against insurmountable odds.

Chris, we miss you!

Love,

Alison and Pat

Monday, March 7, 2005 7:16 PM CST

Hi Everybuddy!

We concluded the celebration of Chris' life today as he was buried at Florida National Cemetery. Once again, we think that he would have been happily surprised to see the large turnout of "Chris fans" who drove almost an hour north of Tampa to be with us. The weather was spectacularly beautiful: sunny and warm, and the azaleas were blooming. Upon advice from the funeral home, most of us arrived at around 10:30 a.m. so that we'd be in place for the 11 a.m. prayer service. The line of cars was long enough to extend well beyond the long driveway designated for queuing up funeral processions; we were told that because the cemetery employees were concerned that it may extend onto the highway, they opened a second line for the vehicles.

The kind and gentle staff members of this very efficiently operated cemetery ushered us to the shelter where the dignified prayer service took place, officiated by one of the deacons from our parish. Later, after everyone said their good-byes, the immediate family accompanied the deacon to the actual burial site, for a blessing of Chris' actual final resting place. We were there when Chris was lowered into the ground. "It is finished."

This seems like an appropriate time to remember

What Cancer Can't Do

It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot conquer the spirit
It cannot steal eternal life.

- Author Unknown

Although Chris is now at rest, we urge you to stop by his webpage from time to time: to continue sharing your memories of him and to check for occasional future updates. In particular, we anticipate that a series of "Chris photos" will be linked to his webpage in the not too distant future. And if you're ever near Bushnell, Florida, please feel free to stop by for a visit with one of the most-loved boys in the world.

Thank you all once again for all that you've done for Chris, and for us, over the years and especially most recently. Thank you also remembering Chris for your prayers and for his friends who continue to need your prayer support for their health: Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Alison and Pat

Saturday, March 5, 2005 9:36 PM CST

Hi Everybuddy!

Today we continued the celebration of Chris' life at his funeral. We think that he would have been quite pleased to visit with the many people who came to bid him farewell. Some of his friends traveled from distant places in order to be with him here today, including some of his closest friends made during treatment, who arrived accompanied by their parents. He would have been particularly pleased to see Arielle with her mom and baby sister, Kate and her mom, and of course Barbara, and a longtime Chris favorite, Jen. It was breathtaking to see them here.

The weather cooperated: sunny and cool (by Florida standards -- we've heard from those who came from up North that it felt pretty warm to them). The funeral itself, attended by many people, was as uplifting and dignified as a funeral can be. The music was beautifully provided by St. Paul's very talented organist, music director and members of the choir, and seemed to come from heaven itself. For those of you who may be interested in reviewing the liturgical selections, they were: Ecclesiastes 3:1 - 8, 11, 14 -15; Thessalonians 4:13 - 14, 18; and John 11: 32 - 38, 40. The priest did a marvelous job of explaining that Chris' suffering was not in vain and how he will continue to touch us in profound ways.

Our friend, Barbara, whom we met years ago at the Ronald McDonald House in Manhattan, also told us about how Chris had touched her life and those whom Chris met at the RMH. As you may recall, Chris ran in the RMH Charity Fun Run this past November two days before his liver surgery, and once again was responsible for raising a lot of money thanks to his internet friends. His race number was 110. Barbara explained that in Chris' memory, the number 110 is essentially being permanently retired for future such races; it will only be used by a designated runner who will substitute for Chris in all future races.

After the Funeral Mass, there was a reception in the church's family center. That's where we re-created the display of some aspects of Chris' life for the benefit of those who were not able to attend last night's visitation at the funeral home. Chris' beloved Mel's Hot Dogs and Papa John's Pizza was served. All of this together seemed to really pay tribute to the wonderful person that Chris has been for so many people. The courtesy and love of those who came demonstrated how much Chris had touched their lives.

The poem on Chris' memorial card is:

Life is Unchanged

Death is nothing at all. It does not count.
I have only slipped away into the next room.
Nothing has happened. Everything remains
exactly as it was. I am I, and you are you, and
the old life we lived so fondly together is
untouched, unchanged. Whatever we were to
each other, that we are still. Mother. Father.
Son. Friend. Call me by the old familiar name.
Speak no difference into your tone.
Wear no forced air of solemnity or sorrow.
Laugh as we always laughed at the little jokes
that we enjoyed together. Play, smile, think of
me, pray for me. Let my name be ever the
household word it always was. Let it be spoken
without an effort, without the ghost of a
shadow on it. Life means all that it ever
meant. It is the same as it ever was.
There is absolute and unbroken continuity.
What is this death but a negligible accident?
Why should I be out of mind because I am out
of sight? I am but waiting for you, for an
interval, somewhere very near,
just around the corner. All is well.

The conclusion of these farewell activities will take place on Monday (03/07/05) at Florida National Cemetery in Bushnell, Florida. Anyone who is able to attend is welcome to join us. We have been requested to meet at the Reception Center at the cemetery no later than 10:30 a.m. on Monday; the ceremony itself is scheduled for 11 a.m., but it is strongly urged that everyone be there ahead of time. For planning purposes, the cemetery is located about 45 - 60 minutes north of Tampa; driving directions can be found on Chris' webpage on the photo page.

Thank you all once again for all that you've done for Chris, and for us, over the years and especially most recently. Thank you for your prayers and for remembering Chris, his friends: Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Alison and Pat

Friday, March 4, 2005 10:15 PM CST

Hi Everybuddy!

In an attempt to try to honor Chris' memory as best as we could, we tried to celebrate his life this evening at the visitation at the funeral home. We arrived early in order to set up a small tribute that highlighted several phases of Chris' short life. There were a line of tables that showed a little bit about Chris' early years (traveling around North America in an RV with Mom and Dad), his preschool years, the stuff that he regularly took to the hospital including some of his many pranks (such as the glowing eyeball glasses and the infamous "fart machine"), along with his school and scouting memorabilia. In addition, there were a couple of computers set up to display a running cycle of some photos depicting various scenes (happy, sad, painful and joyful) from his life.

There were two rooms assigned in order to handle the large number of his friends who came from far and near to pay their respect. We could not begin to mention everyone who came, but there were many: from his school cafeteria to a young "antibody buddy" from New York to his classmates and teachers to a man who shared his honor at having been able to hold Chris' hand at church, and of course many other family and friends. It is obvious from tonight's gathering and all of the emails and postings on the webpage that Chris touched many many people.

We also had the privilege of meeting several people who have long been on Chris' blood team. They have contributed significantly to Chris' welfare and to many other children at All Children's Hospital since, if Chris didn't need a blood product that was stored and it needed to be used, it went to another child. Thanks for the gift of life all of these years.

Chris' closed casket was in the second room, and was surrounded by quite a number of baskets of flowers. At his head was the most recent photograph taken of Chris, made at school about three weeks before he passed away. Attached to it was the gold ribbon dedicated to him that hung on the National Childhood Cancer Awareness Christmas Tree in Washington, DC this past December. Some of his classmates also brought flowers, which they laid on his casket, while others brought more very poignant handmade cards. In keeping with Chris' tradition, we had happy face pins available for all of his friends who came today.

"Chris stories" were told, and amid the tears, there were also smiles. None of this will bring him back to us. But it affirmed our great honor of having been able to be his parents for a little while. We think that he would have liked this "party."

And so tomorrow, we will go to his funeral, which is scheduled to take place at St. Paul Catholic Church at 11 a.m. (directions are posted in the photo gallery of Chris' webpage). That will be followed by a reception at the church's Family Center. The celebration of his life will continue there.

Thank you all once again for all that you've done for Chris, and for us, over the years and especially most recently. Thank you for your prayers and for remembering Chris, his friends: Kimmie, Yaakov, Brian, Nathaniel, Makmoud, Keeley, Taylor, Michael, Christina, Daniel, Michael, Bobby, Luke P., Liam, Camille, Sammy, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Alison and Pat

Wednesday, March 2, 2005 8:51 PM CST

Hi Everybuddy!

We are continuing to try to honor Chris' memory in the best way that we can in the limited amount of time that we have, which is a very poor substitute for not having our boy with us. He is so very missed already and it is so hard to believe that he is not coming home. At least Chris gave us many wonderful memories. His obituary is scheduled to run in tomorrow's Tampa Tribune and "down" (or Southern Pinellas County) edition of the St. Petersburg Times.

There are no changes to the basic schedule that we published last night, although we did receive confirmation that the burial will take place at 11 a.m. Driving directions are posted on Chris' webpage. The schedule again is:

Friday (03/04/05): Visitation at Blount and Curry Funeral Home between 5 - 9 p.m.;

Saturday (03/04/05): Funeral Mass at St. Paul Catholic Church at 11 a.m., followed by a reception at the church's Family Center

Monday (03/06/05): Burial at Florida National Cemetery in Bushnell at 11 a.m.

We have been busy trying to be able to present a more rounded picture of Chris this weekend. We are gathering some of his things that help provide just a little idea of who he was: from his times in the hospital, at school, at karate class, at Cub Scouts, as a very young boy, and of course a sampling of his pranks. We are also working on an electronic slide show of "Chris photos," which we hope to have available by Friday. We may also be able to link it to his webpage in the near future. Funeral planning is in progress. In addition, we have heard that members of his 5th grade chorus are interested in singing in Chris' honor at some point this weekend. That is still in the process of being arranged (the students are currently in the midst of the "FCAT" or standardized testing -- which by the way, was postponed for a day in order to help them work through their thoughts about Chris' passing), and most likely will occur on Saturday either before or after the funeral.

Chris would have wanted all of his friends to have a happy face pin, so we ordered some of them. (To give you an example of the extent of Chris' reach, these happy face pins were ordered from a company that, thanks to a RMH volunteer who reached out to this company a few months ago, had sent him a box full of smiley face items. Mom placed the new order on Monday, without providing an explanation of why they were needed. But some members of the company remembered Chris' story as they were processing the order, and they sent this new large order to us at no charge -- and threw in some smiley face stickers, just in case we didn't have enough pins.)

We have also been overwhelmed by the outpouring of love that people have obviously had for Chris. We are receiving lots of emails and postings to his webpage, and are very grateful for them. We encourage you to continue sharing your favorite stories or anecdotes about Chris. They mean so much to us.

Thank you all once again for all that you've done for Chris, and for us, over the years and especially most recently.

Love,

Alison and Pat

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

Tuesday, March 1, 2005 10:01 PM CST

Hi Everybuddy!

Things are still very sad and lonely around here, but our family, friends, Chris fans, and the people with whom we are making arrangements for Chris' remembrance and funeral have been great. We thank you all for that. Oh, Genie, too. She doesn't seem to realize yet that Chris is missing, but then the guys have been away from her for about 4 months. When Chris did come home for his brief stay between recent hospitalizations, he didn't really feel up to the regular roughhousing ("dogpiles") that they used to share.

Chris has been moved from the hospital to the Blount & Curry Funeral Home, which is where the visitation will take place on Friday, March 4th (5:00 to 9:00 p.m.). Chris' Funeral Mass will be on Saturday, March 5th at our church, St. Paul's Catholic Church, at 11 a.m. This will be followed by a reception at the church's Family Center, where there will be refreshments that we hope will include Chris' favorite pizza and hot dogs. Chris was not the type of person to mope around, and so we hope to remember him as the fun-loving 11 year old that he was.

In lieu of flowers, please feel free to direct donations either to Chris' medical trust account (Medical Trust Account for Christopher P. Becker, Account: XX5057, Exchange National Bank & Trust, 600 Commercial, P.O. Box 189, Atchison, KS 66002-0189 or you can call 1-913-367-6000) or the Childrens Neuroblastoma Cancer Foundation (https://www.cncf-childcancer.org/donations.aspx or CNCF, P.O. Box 6635, Bloomingdale, IL 60108 or, you can call 1-866-671-2623).

Chris will be laid to rest on Monday, March 7 at the Florida National Cemetery, which is a Veteran's Administration Cemetery. Initially we were not too interested in placing him there because it is located almost an hour from here and he'd be surrounded by a multitude of American warriors (adults). However, after we saw the beautiful and dignified location and gave further consideration of Chris' "close combat" for five years and nine months of treatment against a relentless disease (and several more months before he was diagnosed with neuroblastoma on May 25, 1999) and the fact that Chris has unfortunately led most of his life in an "adult world," we felt at peace about this decision. It is surrounded by a state park (Chris loved parks on our trip around the US in 1997). The cemetery staff is very helpful, and he will be surrounded by some of the finest people America has known. We feel they'll feel the same way about Chris when they get to know him, too.

We would like to ask a personal favor of each of you. We want to compile a collection of your favorite stories or anecdotes about Chris. We have come face-to-face with stories about our son that make us miss him more and more, but also truly help confirm our belief in his goodness. For example, just this past week, Chris received a card from a girl in his fifth grade class who wished him well. She signed her name and then wrote "You may not remember me but I am the girl whose back to her earring you helped find." Another recent anecdote was that during this hospitalization, Chris (as always) wanted to give something out to those who help him. So, he asked us to get some rolls of Smarties for him to give away, and called them "Tickles." This of course was in addition to the smiley faces that he's been giving away for years. So if you can, please post your favorite "Chris stories" on his webpage.

Here are the arrangements as we have them now. Driving directions are noted below. Maps will also be posted in the "Photo" section of his webpage.

Friday (03/04/05): Visitation at Blount and Curry Funeral Home between 5 - 9 p.m.

Saturday (03/04/05): Funeral Mass at St. Paul Catholic Church at 11 a.m., followed by a reception at the church's Family Center.

Monday (03/06/05): Burial at Florida National Cemetery in Bushnell (time yet to be determined, but anticipated to be around 11 a.m.).

Thank you all once again for all that you've done for Chris, and for us, over the years and especially most recently.

Love,

Alison and Pat

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

Blount & Curry Funeral Home
3207 Bearrs Ave.
Tampa, Florida
813-968-2231

DIRECTIONS:

Take I-275 north to Bearss (the last Tampa exit) and head west (left) on Bearss approximately 2 1/2 miles and funeral home will be on the right/north side of the road.

Alternate Route: Go north on Dale Mabry Hwy. and make a right on Bearss (head east) and it will be a 1/4 miles on the left (north) side of the road.

Here's the link for a Yahoo map to the funeral home:
Map to Funeral Home

If it doesn't open for you, then just type in the address through your own Internet service provider.

St. Paul's Catholic Church
12708 Dale Mabry Highway North
Tampa, Florida
813-961-3023
813-960-5808

DIRECTIONS:

Go north on Dale Mabry Hwy. until you come to the intersection of Stall Road. Church is on southbound side of road (opposite US Post Office). Turn left and drive down about 1/2 block in order to enter the parking lot.

Here's the link for a Yahoo map to the funeral home:
Map to Church

If it doesn't open for you, then just type in the address through your own Internet service provider.

Monday, February 28, 2005 6:47 PM CST

We are still in the process of working out the details, but right now it appears that Chris' funeral will most likely take place sometime on Saturday. Hopefully we'll have more details tomorrow. We just thought that you (especially those who will have to travel) would want to have an idea of what's going on.

Love,

Alison and Pat

Monday, February 28, 2005 5:58 AM CST

Hi Everybuddy!

It is with extremely heavy hearts that we wish to inform you all that Chris passed away this morning at about 5:50 a.m. His lungs filled with fluid through the night and he struggled for a while. However, about two hours before he passed, Chris began to settle down and become peaceful. It was absolutely our pleasure to have been afforded the gift of being his parents, and we are very grateful to you all for having supported us through the years.

We will post again with funeral details once we have them in place.

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, Artur, Keith, Stephanie, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Rest in peace, Chris, knowing that you are loved.

Love,

Alison and Pat

Sunday, February 27, 2005 9:07 PM CST

Hi Everybuddy!

Chris had a fairly good night last night with few problems and little vomiting. For the most part, blood was not a big aspect of the nighttime vomit and that distinctive smell of blood was thankfully missing. Dad kept an eye on him throughout the night; Chris' "resting" heart rate was mostly in the upper "150s," normally a range that indicates that he is in pain. Dad finally passed the watch to Mom at 5:30 a.m.

Chris spit up some "old" blood several times, but there was no vomiting or heaving but for once this evening. He slept throughout most of the day and night again. Chris also exhibited more signs of confusion than he has in the past. For example, at one point his leg was hanging down off the edge of the chair in which he was sitting, and some of the excess fluid was beginning to cause it to swell. Mom and Dad helped to prop it up on the chair's foot rest. That movement caused Chris to wake momentarily and state that his "leg is fictitious." There were other confused thoughts (such as trying to determine whether he had to spit up or try to go to the bathroom), but there were also a few moments of clarity. Chris is very very tired and drugged, has some chemical imbalances, and sometimes didn't recognize Mom and Dad all that well (although he knew that we were familiar voices and that he should try to listen to us).

There were some positive signs too. Chris ate more today than he has all week. A couple of times he even asked for "seconds" of Mom's "yummy" milk shakes (she
supplements them with nutritionally enriched powder and Glutamine). Altogether Chris ate about 9 teaspoons of this kind of milkshake, along with 1/2 of a popsicle. Dad is now mixing Chris' pills (now crushed) in a cherry suspension. Chris managed to take one dose each of Actigall and Aldactone in this form, as well as butterscotch-flavored Lactalose (an ammonia neutralizer and laxative). Even in liquid form though, it's not easy. We have to go very slow because of the risk of vomiting, as well as because Chris' confusion and weakness complicate matters. We tried to ask Chris to try to use the syringes filled with these medicines as if they were straws (with the intent for us to "push" the medicine through the syringe rather than Chris having to "suck" through a straw). In trying to respond to such a request, Chris tended to open his mouth wide as if he were going to take a bite; we can't push the medicine in because it would just drool right out if he didn't close his mouth. However, Chris will take medicines poured into his mouth from a spoon as long as a small ice chip were in it, too. Chris took his milkshake via spoon, too. He prefers cold things now, like "ice cold water," ice chips or "ice cream."

Another piece of good news was that Chris' drain continued to work reasonably well throughout the night and day. It needed to be "primed" a few times. After the "priming" at 2 p.m., it seemed that the floodgates opened in the drain; a lot of fluid came out. The total siphoned off during the 24 hour period was 2.82 liters. As a result, Chris required extra IV fluids to help maintain his overall electrolyte and fluid balance, on top of that he was already receiving to compensate for the anticipated 1 liter of fluid loss. In addition, Chris was able to urinate (although his clouded thoughts prevent his full attention to the matter). His bowels sound "hyperactive," as opposed to very little noise yesterday when his abdomen was fuller. We are hopeful that he may be able to have a bowel movement soon, particularly since it is necessary to help reduce his increasing blood ammonia level and maybe clear his thinking somewhat.

We'd like to thank Logan's mom and some of her relatives for finding a brand new IV drug designed to help eliminate ammonia from the blood. This drug only received FDA approval three days ago, and even that is not specifically for the use that Chris needs. Still, it is something that the GI doctors can review and try to obtain tomorrow if they believe that it could be beneficial. Thanks Sheryl!

Chris had some wonderful visits today. A surprise visit came from Greg, his mom, dad and brother. They were on the way to a special scouting event in honor of his brother. Chris did "know" that Greg and his family were there, but he really didn't acknowledge them very much (a small wave and smile). Cate arrived shortly afterwards and helped out throughout the day. Les and Ingrid returned as well. There were other visits from another Cub Scout (make that "Boy Scout") friend, Keith, and his entire family, and from another of Mom's co-workers and her granddaughter, Kayla. In addition, Chris' cousins from Germany (Lisa and Lena) called; understanding that Chris cannot really talk well right now, Lena played the piano for him. That was very special.

Once again, Chris was blessed with holy water from Lourdes. Realizing that this is a very biased statement, we find it so hard to believe that such a cute kid can be so very sick. Sick or not, Chris is very determined and strong in his own way. We were graced by his presence for yet another day. We continue to wait and see how Chris' Miracle Protocol is going to work.

Joke of the Day -- Did you take a bath this morning? No. Is there one missing?

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, Artur, Keith, Stephanie, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Genie!

Love,

Chris, Alison and Pat

Saturday, February 26, 2005 9:28 PM CST

Hi Everybuddy!

Unfortunately, there is not much new to report. Chris had another rough night, vomiting up blood several times throughout the night. In fact, every time he vomits, it seems to be nothing but blood. There are varying quantities, but usually around the 50 ml mark each time. Chris is very very tired. He continued to sleep throughout virtually the entire day. His thinking is beginning to cloud a bit when he is alert. For example, twice today he confused a spoon for a drinking straw. He knows how to use a straw, but he really doesn't have the strength to form a good suction on it. So, he gets his sips of water either by drinking directly out of the cup (with assistance because he's too weak to hold the cup) or by having the water spoon-fed to him. On the plus side, he took in about 5 teaspoonfuls of nutritionally enriched milkshake and about 1/2 of a popsicle. However, there were setbacks in terms of deteriorating liver health. He also had some difficulty trying to figure out the difference between whether he had to have a bowel movement or urinate.

Although Chris slept throughout the day, his pain level seemed to have increased. His pain medication level increased in order to match it, which allowed Chris to remain generally comfortable all day. However, even in his sleep, Chris' heart rate has been gradually increasing.

Chris' drain seemed to work reasonably well, although it needed "priming" several times. Despite the presence of the drain, Chris' belly is growing. It is possible to siphon off fluid manually from Chris' belly with the drain, so that occurred several times today. It's on something of a schedule so that Chris can continue receiving an appropriate amount of IV fluids to prevent overall body dehydration. Chris is thirsty when he is awake but he still can't tolerate more than a couple of sips of water at a time. At 12:30 p.m., Chris had been sound asleep, but he sat bolt upright and in his whispery voice asked if there is water in heaven. Then he laid right back down to sleep. Mom assured him that there's plenty of water in heaven. Actually, Chris was able to handle the water a little bit better today than yesterday, so he was able to drink more today. Still, it was a heartbreaking question.

Chris slept through several visitors today. His teacher came by and dropped off a stack of more lovely "get well now" and "kick cancer" cards from his classmates. He also brought a packet containing the official class photo and Chris' school photo. We were not only happy to receive these, but especially so since the school photo, taken only about 3 weeks ago, is among the best that has ever been taken of Chris. We'll try to see whether the school photographer still has the proofs available so that we can order more copies. Another friend from the Tampa Clinic (Dana and her mom) came to visit, as did Cate, Ingrid and Les, and another member of Mom's office. Later in the evening, the mother, grandmother and aunt of a boy who went through treatment with Chris a few years ago (Logan) came to visit. The aunt had met Chris a couple of times in New York, and became the subject of one of Chris' songs ("Get Your Pants Wet") after she sat down in a puddle when she took Chris and Dad to an aquarium.

Once again, a priest came to pray with Mom and Dad over Chris and to administer a very tiny piece of Holy Eucharist to Chris. He awoke and received Communion dissolved in a bit of water and served to Chris in a spoon. Like yesterday, Chris came very close to vomiting right after that, but he stabilized himself before settling back down to sleep. Chris was also blessed again using holy water from Lourdes.

Chris remains in very delicate condition, but he spent another day with us. The nurses seem to be in absolute awe at his determination. Those who are not directly caring for him come to look at his cards, talk to him about their favorite times with him, and sometimes out in back corners (so other patients don't see them), to cry with us. The impact he has made on people has been phenomenal. Once again, the fact that Chris remained with us yet another day (and was able to tolerate tiny bits of enriched milkshake at a time, and even was able to urinate and have a formed bowel movement) continues to give us hope that we will soon see in which way Chris' miracle will be granted.

Joke of the Day -- (thanks Tori) -- Why did the cookie go to the hospital--it was feeling kinda crummy.

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, Artur, Keith, Stephanie, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, February 25, 2005 8:36 PM CST

Hi Everybuddy!

Chris had a rough night last night. He vomited up blood several times throughout the night; the first few times was "old" blood, but later it was clearly fresh blood. Sometimes the heaving involved was pretty significant and scary. Chris is continuing to weaken, probably in part due to the stress of the vomiting and in part due to the inability to take in food. He slept throughout virtually the entire day. Even when Chris stands up to try to go to the bathroom or transfer to a chair, his legs and arms tremble. Nonetheless, we are happy to report that Chris is still here with us.

Chris' drain seemed to work reasonably well, and by morning the flow rate out of it had reduced significantly. He is receiving IV fluids on a milliliter-for-milliliter basis in order to replace the abdominal fluid with electrolyte-balancing fluids to prevent overall body dehydration. Chris is thirsty but he can't tolerate more than a couple of sips of water at a time. Hopefully the IV fluid replacement will continue to help meet his thirst needs.

We were able, over the course of the entire day, to spoon him a few teaspoonfuls of nutritionally enriched milkshake. A couple of times, it came right back up with some blood, but some of them stayed down in the belly. We're trying to treat this nutritional emergency kind of like a newborn needing to drink a little bit every few hours in the hopes of being able to try to get a few calories into him without overloading his very delicate situation.

It was a somewhat quieter day in terms of visitors: Parker's mom and dad, as well as Cate and Les. Chris awoke when Father Brian came to say a prayer with Mom and Dad, and give Chris a very tiny piece of Holy Eucharist. Chris came very close to vomiting right after that, but he stabilized himself before settling back down to sleeping. At different times through the day, Father Luke and one of the hospital's staff chaplains (not the one responsible for the problem the other day) also stopped by. Chris was also blessed again using holy water from Lourdes.

Yet again, Chris remained in very fragile condition -- fragile enough that neither Mom nor Dad want to be away from him for very long. His level of painkiller was increased, and he took a few extra "hits" on top of that at various times, too. Aside from keeping Chris as comfortable as possible, our top priority is to try to reduce the risk of vomiting, followed closely by attempts to get at least a few calories into his body. As one dear friend pointed out, Chris is walking through a field of landmines. We fully recognize that only a miracle will bring him safely through this field of landmines. The fact that Chris remained with us yet another day (and was able to tolerate tiny bits of enriched milkshake at a time, and even was able to urinate and have a bowel movement) continues to give us hope that we will see in which way Chris' miracle will be granted.

Joke of the Day -- People know what the speed of light is. What is the speed of dark?

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, Artur, Keith, Stephanie, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, February 24, 2005 10:09 PM CST

Hi Everybuddy!

Chris had one of his quietest nights last night. Although he vomited a few times during the early morning hours, they were not to the same severity level in terms of volume or effort as the previous day. As a matter of fact, Chris and Dad sort of "slept in" while Mom headed for the Ronald McDonald House to get cleaned up, and were
"awakened" by a visit from his principal and the school's psychologist (neither of them dropped off any homework for him to do). Chris' alertness level faded in and out during their visit. They were soon joined by another visitor: Parker's mom. Chris and Parker went through treatment together a few years ago.

Chris received a few other visitors as well, but as usual, he slept through most of their visits: Ingrid, Cate and Les, as well as his former principal (she retired last summer) who brought with her some get well wishes from members of the school's staff, too. Later in the evening, there was a surprise visit from Uncle Ed, who is in Tampa on business. Uncle Ed came over and watched what was to be a "World Championship" Risk game, but Chris began getting nauseous and then started vomiting "new" blood. That brought on a postponement of the game and triggered the transfusion of platelets. We really appreciated his visit, too.

From a medical perspective, Chris remained in pretty much the same kind of very fragile condition. We're really hoping to try to avoid the vomiting so as to avoid the very high risk of a vascular "blow out." So far, so good on that regard, but not so for the vomiting in the evening. For a few minutes, Chris heaved pretty hard. That in turn caused some mucous and old blood to come up, which was followed by fresh blood and large clots before he finally finished. That was a very scary few minutes, just as the other such moments have been. Chris also complained of belly pain (which appears to be related to the weight of his abdominal fluid) and throat pain. The doctor ordered an increase in the base rate of painkiller if Chris wants it.

Another major issue today was related to Chris' drain. It worked very well yesterday, but by this morning, it had clogged to the point of not being functional. After checking all the visible points along the drainage line, the best guess was that perhaps the inside part of the drainage catheter may have gotten stuck against part of his intestines (kind of like blockage of one of a straw when you're trying to suck on the other end). The surgical resident thought that the best way to handle this situation was to insert a smaller catheter inside the current catheter, then pull out the larger catheter. The advantages were that the smaller catheter has several holes in it to allow drainage (if one becomes blocked, then the other holes can still allow for drainage) and the smaller one is more flexible than the larger one.

So, that's what happened. The net result was 1.2 liters loss within less than two hours. That rate of loss caused concern for possible new electrolyte imbalances, so the new drain was clamped off for about four hours to allow for replacement hydration and other medications. Once the drain was allowed to flow again, it's still draining very well. In order to try to maintain control over the overall fluid balance, the drain will be clamped after another liter is drained away (already around 800 ml has been collected).

Chris' belly is visibly shrinking again. This seems to cause him some temporary weight-related pain. But Chris also seems to be experiencing some esophageal pain as well as he tries to sleep tonight. This is after he vomited up fresh blood and as he is now receiving another platelet transfusion. As noted above, Chris was able to receive a little more painkiller to try to allow him to rest comfortably through the night.

He was able to eat a couple of popsicles (several hours apart), although unfortunately, he tossed them up. There were moments when he felt halfway decent when considering his weakened condition. One time, Chris wanted to play with his GameBoy; he played Mario Brothers but only for about 5 minutes. Other than that, he generally watched television or listened to a book being read aloud by his teacher, when he wasn't sleeping.

The bottom line is that Chris remains in very fragile condition. We continue to do the best that we can in an attempt to determine the parameters of the Miracle Protocol. We are grateful that we have been granted yet another day with this very special boy. It is our honor to continue to try to care for him.

Chris was blessed again with holy water from Lourdes, and we take comfort in how much love and support he is receiving. Once again, we continue to await further guidance as to the form of Chris' healing.

Joke of the Day -- Why is a wise man the opposite of a wise guy?

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, Artur, Keith, Stephanie, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, February 23, 2005 10:27 PM CST

Hi Everybuddy!

The guys really didn't get much sleep last night, well, not until 5:00 am this morning. Chris had numerous incidents of vomiting up "new" blood. The orchestration of vomiting and running to the bathroom caused several changes of bed linen. Chris also had pain at irregular times in the cycle of his pain management medication, so he received a medicine pump that provides a constant low dose of pain medication but also has a button for transient pain. If that was not enough, Chris' respiration rate lowered so he also began receiving oxygen. At first they tried a nostril type delivery system, but because Chris throws up through his nose and mouth, Dad asked for a mask, which could be more easily cleaned. That was eventually provided.

Chris had a fairly active social day, although he was asleep for a lot of it. His first visitor was Ingrid, who got put right to work. She (unsuccessfully) tried to teach Dad how to make a "proper" hospital bed. Chris' teacher kept stopping by until he was semi-alert, watching a Sinbad movie, which she thought qualified as an educational event under the circumstances. Taylor's Mom and Dad and their new son Logan (who is quite a charming baby), also stopped by. Chris slept through that visit. Not too long after their departure, his school nurse arrived from Chris' school bringing "Get Well" cards from the office staff and his classmates (some were hilarious, while others were unbelievably touching for such youngsters). Cate then arrived, followed eventually by Les. Chris also had a visit from several members of his beloved Tampa Clinic staff, for which he was alert. Eventually as the group thinned Chris (aided by Cate), Les, Mom, and Dad played Chris' card game, "A Series of Unfortunate Events."

Chris is very fragile right now. In fact he is so fragile that he cannot really even be transported nor can he undergo any scans that require dyes, contrasts or isotopes. Anesthesia is not a good option right now. The doctor asked Mom and Dad to accompany her into a conference room, where we had to participate in a discussion about what to do for him if Chris goes into distress. If we wanted Chris to receive higher level care in the Intensive Care Unit, then he needed to be moved there now because any such medical action would have to take place in seconds, not minutes. Even then, of course, there are no guarantees and could further harm him in the process. Because this is really a "no option" option, we very sadly and reluctantly signed a "Do Not Resuscitate" order. If we get a clear signal that the Miracle Protocol may take us in a different direction, then we will revoke that order ASAP. But for now, it is the most peaceful thing that we can do for him.

The primary concern is the extremely high risk of bleeding from what are essentially "varicose veins" or "hemorrhoids" along Chris' abdominal blood vessels. Simple movements could cause them to "blow out," so continued vomiting is highly likely to do so. Therefore, our top priority is to try to prevent more vomiting. Although Chris had a very rough morning, he did better through the day. He received nothing to eat today and very little to drink. The reason for this was to try to reduce the chance of nausea, especially until after the surgical team had a chance to try to place an abdominal drain. It had to be done with local painkiller, assisted by Chris' Dilaudid, because Chris is not likely to wake up from anesthesia right now.

The drain was actually put in place by the surgeon and some of his team right in Chris' room. It's only good for a couple of days' relief due to infection risk and likelihood of clogging up. Ingrid was present to watch the procedure, too. It's made a big difference on Chris' level of alertness, ability to drink fluids and reduction of vomiting. So far, about 1.4 liters of fluid has been drained away. Most notably, it appears to be relieving the pressure near the chest and the upper abdomen.

Chris received some phone calls today from people like Uncle Alex and his school's former principal. We also placed a phone call to Aunt Jackie; Chris' very weak voice was assisted by Mom, Dad, Cate and Les in singing "Happy Birthday" to her.

Medically, things are still very tenuous. Nonetheless, there was a noticeable improvement after the drain was in place. We had hoped that the drain might enable him to move his bowels and urinate better. So far, that benefit is yet to be seen. He did manage to drink some water over the course of a few hours after it was installed. We did an incremental increase in the amount of water he drank. Although he eventually vomited, at least it wasn't "new" blood. Chris was able to drink about 6 ounces of water and sweet lemonade. He was alert for much of the evening, although he did complain periodically of stinging abdominal pain. He is at least generally comfortable for now, and sleeping.

Chris was blessed again with holy water from Lourdes, and we greatly appreciate the tremendous amount of love and prayers that surround him. We are very grateful for yet another day with this lovely gift of a child, and continue to await further guidance from the Great Physician as to the form of Chris' healing.

At Chris' request, the "Joke of the Day" is returning -- Why was the computer injured? Because it slipped a disk.

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, Artur, Keith, Stephanie, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, February 22, 2005 11:41 PM CST

Hi Everybuddy!

Our amazing Chris is still with us, weakened and terribly sick, very thin and malnourished, but not defeated by any means. That alone is a miracle in and of itself. We know that he is too sick to be healed by any human physician at this point. However, we await further guidance from the Great Healer, who has provided a glimmer of hope today, as to whether that healing will take place in heaven or on earth using the current "Miracle Protocol."

In order to control the gastric bleeding, Chris' transfusion points were raised for both platelets and red blood. He received platelets overnight and more heartburn medication via IV in order to try to reduce the risk of vomiting. After having been awakened due to barfing overnight, Chris and Mom listened to Dad reading the last few chapters of "Because of Winn-Dixie" between 3 - 4 a.m.

That platelet effort worked well enough that Chris awoke this morning sufficiently alert to be able to interact with his teacher. She came to read to him. Because he was alert enough at that time and, like all kids, needs to have his mind stimulated, she offered him a chance to participate in one phase of the standardized testing that is currently going on in Florida schools. Chris was too weak to be able to concentrate well enough to do his own reading, so the teacher read the essay to him (it was about the astronaut Sally Ride), along with the accompanying questions. She marked down the answers that he gave. Despite his dire health situation, Chris scored 100% on that section of the FCAT, which is the "real" test that every other 5th grader in Florida public schools is taking this week. The boy is absolutely phenomenal.

In other medical news, the doctor, practicing the art of medicine, now believes that the problem with the kidney is related more to the dehydration that Chris is experiencing as a result of trying to stabilize the fluid retention and electrolyte imbalances. In short, it appears that there really isn't anything wrong with Chris' only kidney once the IV fluids were readjusted. Also, there was less blood and more bile-like material found in most of his many stools today. That's good news because there shouldn't be blood there and, as they say around here, "green is good" in poop (especially when taking the medication to reduce blood ammonia level). The ammonia level continued to drop to the mid 70s (it needs to come below 50 in order to get into the normal range). Most of the other liver function numbers, which have been elevated, have dropped a bit, too. Some of the doctors with whom we have been consulting (both those who have treated Chris at various hospitals, and others who have expertise in neuroblastoma and even one at the National Institute of Health) have indicated that, under Chris' circumstances, this could reflect that Chris' liver failure is serious enough that such "markers" are no longer serving as markers for Chris. It's hard to say at this point if this is true.

Chris was more alert this morning than he was yesterday, which could point to some success gaining some control over liver functions. Other successes include the improved stool production and the fact that this morning's vomiting episodes produced very little blood, and that which was there appeared to be "old blood." Chris was able to nibble at lunch, but by no means enough to provide any significant substinance. Nonetheless, something is better than nothing, and the effort made helps keep the digestive tract somewhat operational. His belly remains very large, but the leg swelling seemed to be somewhat reduced. Chris was only able to urinate three times, without much coming out. However, there is fluid loss being made both in the stools and the vomit.

After lunch, Chris felt some break through abdominal pain and nausea. He was able to mentally keep himself under control while giving the medication time to work. It did, but it put Chris to sleep again for several hours. After being awakened, Chris headed to the bathroom. The moment he sat down on the toilet, Chris began to heave more powerfully than he ever has before. It took several moments for that to come up and out. However, it appeared that such effort caused a bad chain of events inside him because he was subjected to several more episodes of 150 - 300 ml of fresh blood (sometimes with large clots) being expelled through both his nose and mouth. He was not a happy camper about all of that, which also made him feel weaker, hurting and nauseated. He had no choice but to lie back and rest in order to try to gain control over that situation. And so he slept again.

When he was again awakened, we were careful to move him as slowly as we possibly could, in order to avoid making him sick to his stomach and potentially causing him to vomit again. On one level, it was an unsuccessful effort since he did throw up blood again, but on another, it was ok since, at least for a short while, he felt better than he's felt in days, before the drowsiness attached itself to him again. By then though, it was well past a traditional bedtime.

Chris received quite a number of visitors throughout the day. Most of them did not see Chris awake. Although he really slept through it (Chris tried to open his eyes, but couldn't quite do it), Chris received from his Cub Scout Master and his wife the Arrow of Light Award in a modified "Crossing Over" ceremony that advanced him from Cub Scouts into Boy Scouts. The actual ceremony is to take place on Thursday, but obviously due to the current health situation, he will not be able to attend. At the ceremony itself, Chris will become the only pack member to receive another special award for having completed each of the 20 Webelos Scout tasks. There were other visitors from Mom's office, Cate and Les, the hospital's music therapist, the Tampa Clinic's child life therapist, and a boy named Logan (who underwent treatment with Chris a few years ago) and his mom. This was in addition to the many emails, webpage messages and telephone calls, including from Uncle Tom and Cousin Jane from France. But he sure is loved by many.

To those who have asked about the significance of Chris having groggily asking Dad for a pony yesterday, we are not really sure since he has never really cared one way or another about ponies. Mom and Dad initially thought that perhaps, since the television was on at the time, it might have been a reference to a commercial for "My Little Pony" toy. However, it is also very interesting to note that Chris' "fiancee," Allie, who has preceded him to heaven, loved ponies and horses. Considering where Chris is at this point in his life, we really do not know why he asked for a pony; maybe his connection with Allie lives on at a different level. We do know that Chris still has his will to live.

We also know that there are thousands of prayer warriors on Chris' side, judging from the support that we receive directly. We ask that you continue to help us lift Chris up in prayer for the healing based on the "Miracle Protocol" as God sees fit. May all of our prayers together bring Chris to full restoration quickly. In the meantime, Chris will receive both platelets and red blood tonight, along with IV mediations to help settle the 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, Artur, Keith, Stephanie, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, February 21, 2005 9:30 PM CST

Hi Everybuddy!

It was a difficult day for Chris, but not without some bright moments. He has been spitting/vomiting up old blood (and whatever food that we give him) and been excreting the same stuff from the other end. Later in the day, he began vomiting up fresh blood, too. In short, he now has some gastric bleeding. In order to try to reduce that, Chris is receiving now a platelet transfusion to try to bump his count above 75. He is at a high risk of bleeding, even to the point that the required mediport access needle change tonight is of concern. In addition, there is a lot of concern that fluid could accumulate in his lungs.

Chris' ability to take in food, and to a certain extent even drink, is becoming very limited. It is not a problem yet for swallowing, but he is so drowsy that he forgets to chew, thereby raising the risk of aspiration. He sleeps a lot and is generally comfortable. However, the vomiting is wearing him down, especially with the blood which makes him nauseated. It's the only thing that he complained of. In fact, after climbing into bed (we tried to get him up a couple of times today despite his increased drowsiness), but before he could even get himself situated, Chris leaned over the nearest barf bin and threw up fresh blood. What a pro!

Although Chris is still on the oncology ward, we can tell from the comments of the doctor and the general "feel" from the rest of the medical staff (many who have cared for Chris for years) that Chris is at a critical stage. Dad suggested migrating some of the sodium management from those dreaded salt tablets to something IV, which they did. Because of all of the blood in his vomit, several other medicines are now being delivered via IV. That helped Chris' attitude a bit, but the big problem is how Chris' liver processes the medicines. He isn't even getting the benefit of much of the Benedryl and Dilaudid because of his liver's failure to process the medications. His liver is failing to perform several different things that it is supposed to do, from cleaning the blood stream of toxins to making coagulation factors.

Some of today's bright spots were that he was somewhat alert for a visit from Greg and his Dad in the morning. Greg brought a very special handmade card for Chris that truly summarized their friendship. Later in the afternoon, Cate came by with a lovely videotape of that was filmed throughout the area that included many of Chris' friends, supporters, and "haunts." Chris fought hard to remain awake to be able to watch that film and seemed to enjoy it. But he could not remain awake for very long and fell fast asleep. Later in the evening, Cate, Les, and Genie the Wonderdog came by for a visit. Chris was asleep for most of it, and even when he wasn't, he was so groggy that he really couldn't interact too much. Sadly, Chris had just received Dilaudid due to sharp belly pain and didn't really get to goof off with Genie. Still, Genie and the medical staff had a wonderful time, as did Mom and Dad. Extra special permission was granted to allow Genie (who is, after all a trained therapy dog) to come to Chris' room in the oncology ward; we are very grateful to everyone involved in making that happen. Unfortunately, each of these visits were short due to Chris' medical state. Chris' hospital teacher came by to read to him from "Because of Winn-Dixie." He "listened with his eyes closed."

Chris didn't joke around much today, although once around midnight and after having vomited, urinated and all, the guys had a fun discussion and Dad read some from "Because of Winn-Dixie." He comes and goes, and even though he is very weak, his sense of humor is still intact. At one point, Dad asked if Chris wanted anything while Dad made a shopping run. Chris' response: "a pony."

We really appreciate all of the correspondence offering support. Chris is often too out of it to really hold a conversation most of the time though but we do try to catch him up on e-mail and posting to his "Guestbook" when he is somewhat alert. He spoke (well, listened really) on the telephone during very brief conversations with Aunt Jackie, Cousin Ryan, Cousin Sean (who took a risk to make the call from under his desk since he is a cadet and not allowed to make cell phone calls) and Uncle Alex. There were others who checked in but Chris was not up to it at the time.

Medically, things are obviously not good; it is a tremendous challenge just to compensate for the failing liver and only kidney, much less confronting his cancer. In short, Chris' only option would be a "Miracle Protocol." But at least he is generally comfortable for now, and sleeping.

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, Artur, Keith, Stephanie, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, February 20, 2005 10:25 PM CST

Hi Everybuddy!

Chris was more alert today, which made for a better day than he's had virtually all week. In fact, he was wide awake at 5:30 a.m., perfectly lucid and goofing off with Dad. That early morning period opened with Chris awakening suddenly and vomiting what looked like the remains of the previous night's dinner, with some phlegm thrown in to boot. He then made a quick call to the bathroom in order to urinate and have a bowel movement. That was hen "Chris" was "back." The guys talked for about a half hour and then decided to read on in his book, "Because of Winn-Dixie."

After a little snooze break, he woke up when Mom arrived from the Ronald McDonald House. This time he wasn't as alert as he was between 5:30 and 6:30. Upon suggestion, he agreed to continue the game of Monopoly with Mom and Dad which was started yesterday (we left the board set up and in place on a table in his room). He had his pile of money and real estate cards in front of him and generally tried to actively participate. But he got tired so Dad helped him sort his money and figure out how much rent he was collecting as we landed on his spaces (he owns Boardwalk and Park Place). That game remains "in progress" in hopes of a continuation tomorrow. Meanwhile, Chris was simultaneously trying to eat a little something (the game was a distraction in order to encourage eating when assisted by one of us) and taking his morning medicines.

All of that wore him out, so he napped for about an hour or so. By then, Mom had ordered lunch for him, so she woke him up in order to work on that and see if urination or a bowel movement could be coaxed. There was better success in the bowel movement department throughout the day. The medication being used to address the blood ammonia level encourages bowel action. It was mildly successful; the ammonia level was brought down from 104 to 92, but it should be under 50. However, it appears that it, plus the decision to space the doses of Dilaudid further apart (from every 4 hours to every 6 hours) may be responsible for Chris' increased level of alertness (which still was not up to where he typically is). We were happy to be able to enjoy that with him.

Mom asked a priest to come visit Chris today. As arranged with Mom just before he went to meet with Chris, the priest offered Chris Holy Communion and the Anointing of the Sick, which Chris willingly accepted. Although Chris has been through this sacrament before, this priest took some time with Chris to explain what it is about. He also very gently questioned Chris to see if he had any questions about what to expect on his way to heaven, but Chris didn't have any today. The priest will return tomorrow (and is available at any time, should that be necessary) to spend some time with Chris. We don't want to upset Chris, but obviously he may have some questions and we want to be able to address those if he does.

Later in the day, Mom also gently asked Chris whether he wanted to go home or remain in the hospital. Chris said that he wanted to be here in the hospital. That does not surprise us since it is a very familiar surrounding to him, where members of the nursing staff who have been here since his "early days" in treatment have always treated him like royalty. They still do, but a little quieter now to match his much reduced energy level. This hospital is a second home to him. The only other thing on which Chris commented was that he wanted to not have to take the salt pills. To do that at this point though could put him in a greater tailspin than he already is in, so he'll have to take those as long as he is able to take food in by mouth.

As it is now, Chris is already incredibly thin, but with an enormous belly and swollen legs and feet due to the excess fluid that cannot be stored in the abdomen. From the backside, you can easily see every rib and vertebrae in his back, as well as how his shoulder blade connects to his collarbone. There are pressure bruises on his back and hips that match with wrinkles that form on his bed linen (once those bruises appeared, we became more attentive to making sure his bed linen is always pulled tight). The bone scan report indicated that, in addition to the tumors mentioned in the CT report, there are small suspicious spots on his lumbar spine, right knee and right foot (tomorrow, an x-ray will be ordered to verify what those are, in accordance with the radiologist's recommendations, rather than subject Chris to another MRI (which is very noisy). We were told that Chris' liver is irreversibly damaged and is beginning the process of failing. The drowsiness is likely a combination of both the high ammonia level as well as inefficient processing of the Dilaudid and Benedryl by the liver; it is likely to increase as time goes on. In addition, one of the proteins found inside liver cells was greatly elevated in today's blood test, which is apparently indicative of liver cell death. His attending nurse today estimated, based on her years of experience in oncology, that Chris probably only has maybe a couple of days left on this earth. Our little warrior is just worn out.

After allowing a little rest after lunch, we were able to coax Chris out of his room for a bit. Although he walks from his bed to the bathroom and back, Chris wanted a wheelchair in order to be able to visit the sun room. There Mom and then Dad read to him in his book "Because of Winn-Dixie" while Chris enjoyed most of a Slurpee that Dad got for him. For a little bit, Chris' sense of humor shone through as Dad was reading. Every time he said the word "smile" as he read (which was fairly frequently at that point in the book), Chris gave a quick little smile. At first Dad didn't see it because he was reading, but Mom caught it and pointed it out to Dad. We all chuckled over that. Eventually a couple of other families came to the sunroom, but Chris began to tire again and requested to return to his room. After a short rest, he tried to eat a small cookie as a snack as he took his supplements.

During this time, our friends Les and Ingrid came by for a short visit, during which Chris was awake but fighting drowsiness. He was also attempting to eat. Initially, he had some luck but lost most of it towards the end of their visit.

Chris' ability to eat is very poor; the last time he was very thin (but not quite like this) was during and after his second bone marrow transplant in 2001. It seems that our options are very limited in terms of supplemental ways of providing nourishment because his liver is in such bad shape. Not only are the devices used to provide alternative ways of giving nourishment a risk of bleeding and/or infection, but those kinds of nourishments are generally very hard on the liver. As it is, Chris is typically vomiting several times per day, probably because of the decreased ability of his digestive tract to move the food out of the stomach. Over the last couple of days, we're seeing more and thicker mucous come up with the food.

Over the course of the day, Chris had a pretty good amount of contact with some of our friends and family. Of course, we are very grateful for the many emails and postings to Chris' webpage. It is difficult to be able to determine when he's going to be feeling good enough for very short conversations, so there are some people who have called who have not been able to speak with him. We apologize for that but Chris' needs have to come first right now. To the extent that Chris is able to tolerate it, we don't mind close family and friends trying to call, but it really is very dependent on how he is feeling at each moment. We don't want to overtax him. At various points throughout the day, Chris was able to briefly speak with Uncle Eric and Anitra, Cousin Lisa from Germany, as well as Grandma and Grandpa, and Grannylyn and Granddad and Uncle Brian (who is currently visiting at their home). In many of those conversations, Chris' tiny voice was too small to be heard on the other end of the telephone, but at least some connection was made. Chris also called his friend Greg and actually talked to him for a little bit. We are especially proud of the internal strength that Greg possesses as he continues being Chris' best friend right to the end. That's a lot for an 11 year old to have to deal with, but he has done it with tremendous grace.

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, Artur, Keith, Stephanie, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, February 20, 2005 0:48 AM CST

Hi Everybuddy!

Chris had a rather peaceful day today. He spent most of it sleeping. This is probably the result primarily of his even higher blood ammonia level, which can cause drowsiness and confusion. When he is awake, he is alert to his surroundings and in generally in a good mood, but simply cannot fight off the drowsiness for very long.

He was able to get up out of bed whenever he was asked to do so. Mom asked him to move from one location to another about once an hour or two. This was to help keep him awake in order to eat or try to go to the bathroom or even just for the sake of exercise. He walked down to the sunroom in order to listen to a story. Mom was able to snuggle up with him for a little while, even though he was too drowsy for her to read more than 2 pages.

Because he is so sleepy, it takes forever for Chris to nibble on his food, although he did eat a little better today. His inherent discipline allowed him to concentrate (when asked to do so) on not throwing up, which paid off a couple of times. Most of the time when he asked for the barf bin today, it was to spit up some of the thick mucus that coats his mouth and throat, although he did actually vomit once. Nonetheless, he was able to keep virtually all of his food and medications down today.

He made several trips to the bathroom, most of which were for "false alarms" in terms of urges. With the help of medication, Chris was able to both urinate and defecate a few times, both of which are important in trying to remove the toxins that are building up in his body. Chris' medication that is supposed to be reducing the blood ammonia level was stepped up to a higher dosage, so we're hoping to see him awake a little more tomorrow if it works. The ammonia is removed through his "poop" so it's important to keep all bodily functions operating.

Chris was able to remain a little more alert at around 8 p.m., just as he did yesterday. We capitalized on that opportunity to try to feed him a little more as well as to engage his mind in a shortened game of Monopoly. Chris participated as much as much as he could (he had a pile of money and real estate cards, and he occasionally rolled the dice), but eventually he grew sleepy again. Nonetheless, he seemed to enjoy it. He also enjoyed the box of goodies that some of you sent his way (in response to a letter from one of Chris' fans). There was a wide assortment of things to help Chris remember home (the box was originally prepared for delivery to Chris in New York, but he kept moving around).

Chris had a couple of visitors today and received a lot of phone calls and emails. Although he isn't necessarily aware of all such calls and emails yet (we'll continue to tell him about them as his level of alertness allows), we are grateful for them. Just be aware that we may not be able to return phone calls right away. The primary focus is on Chris right now.

We have asked the doctors to work toward trying to stabilize the liver, which is in worse condition than the kidney. If we can get better liver functioning, it is suspected that the kidney would likewise improve because its chief source of problems is the malfunctioning liver. These efforts are being done in the hope of a miracle could occur. But they are being done in a manner that is sensitive to the need to take care to not cause any further distress to our valiant warrior, who has fought so hard for so long.

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, Artur, Keith, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, February 18, 2005 11:12 PM CST

Hi Everybuddy!

This is an update that we wish that we did not have to write. Both Mom and Dad were called into the social worker's office in order to privately meet with the oncologist. This has only happened twice before (upon diagnosis and when the first pronouncement came in January 2000 that Chris was not going to make it), so it is not considered a very good omen. It certainly was not today.

After doing comparisons to the previous scans, the oncologist explained that she does not believe that there is anything more that can be done for Chris, but for keeping him comfortable for the remainder of his life, which is expected to be, at best, a few weeks. The cancer has spread: there are more and larger tumors on and in Chris' liver, and there are multiple tumors on his digestive tract lining. There is heavy bone marrow involvement. This does not count any results that may come in from today's bone scan or next week's MIBG scan. On top of that, Chris' liver and only remaining kidney are showing signs of weakening from the years of treatment plus the current tumor load. That is why his blood ammonia level is high (one of the liver's jobs is to clear it out of the bloodstream). The weakened liver is suspected to be real cause of the fluid accumulation in the belly. The oncologist believes that either or both the liver or kidney are likely to fail before he would succumb to the actual tumor burden. There simply appears to be too many problems that need fixing at the same time. That, unfortunately, is what he needs.

Chris was with his teacher at the time we were getting this news. He remained fairly drowsy throughout the day, including his time with her. However, he fought hard all day to remain as alert as he could. Not long after he got settled back in his room after working with the teacher, Mom and Dad sat down with him and explained this new information to him, and asked him what he wanted to do about it. Chris said that he'd try whatever option we could find for him. A few minutes later, the doctor came in and basically repeated the conversation. Again, Chris asked what options he had. She told him that she had none for him. Mom and Dad reassured him that we would see if we could find anything for him. While the doctor was there, Chris vomited again. This time, he threw up dark brownish material along with some of the water he had drank.

Meanwhile, members of the surgical team came to visit Chris (at our request, since Chris' surgeon is currently on vacation). We discussed the possibility of placing some sort of device in Chris' abdomen to act as a true "tap" in order to help drain away the fluid. The available device is only very temporary and can only stay in place for a couple of days due to risk of infection or plugging up with "gunk" from the fluid collection. So, it was decided that Chris would undergo another traditional "tummy tap." Because he had so very little to eat or drink (he did drink some water), it was ok for him to get into the operating room fairly quickly (it was a light surgical day).

He cried a few tears over the news that he had just heard, but his roommate (a 6 year old) started getting a little noisy. So, Mom and Chris decided to walk to the sunroom in order to play Monopoly, while Dad got to work on the computer and telephone. Chris really wasn't alert enough to concentrate on the game anyway. As far as Mom was concerned, this was really supposed to be time together to be able to talk one-on-one. However, as they worked on trying to set up the game, a new (or at least new to us) hospital chaplain came up and just sat down at our table without saying anything. Chris, who has a soft voice anyway right now, began to whisper about how he wanted a drink of water right then (but couldn't have it due to the then-pending tummy tap procedure). Mom couldn't hear Chris as he whispered, so she leaned in closer in order to be able to hear. That's when the as-yet-unknown hospital chaplain leaned right up to Chris too. Now that was strange. Then she began to tell Chris to "follow the light," just as his gurney arrived to take him to surgery. That began to scare him. Mom shooed this ill-timed chaplain away and reminded Chris that this was just an ordinary tummy tap procedure. He calmed down.

All three of us went down to the "pre-op" room. Since this is a fairly routine procedure, Dad left after meeting the anesthesiologist and the surgical nurse (we had already met the surgeon up in Chris' room) so that he could return to trying to research what he could to help Chris. In the meantime, Chris' friend, Greg, and his mom arrived for a visit, as had been planned yesterday and even confirmed this morning, before we got the "hospice talk" from the oncologist. Unfortunately, although they were here for a while, most of the time, Chris was down in the surgical suite area. Chris did return to his room before they left though, so Chris and Greg did get a chance to visit for a little bit. It is our hope that the boys will be able to get together for a visit soon (but the timing of that depends on whether we can find a treatment option or not elsewhere).

In other news, Chris was generally more comfortable today (thanks to round-the-clock low dose Dilaudid), but for the repeatedly unsuccessful attempts to urinate. He received albumen and Lasix today, but to no avail. We've asked that he receive a higher dose of Lasix tomorrow. (We know the urine is there because it showed up on the bone scan.) He feels the urge, but nothing (or occasionally a little bit) comes out. As the evening passed, Chris' belly continued to grow, even though today's tummy tap drained 3.8 liters (about a gallon) out of his belly. In addition, the anesthesiologist had inserted a "NG" tube into his esophagus and stomach. Before the procedure was over, he suctioned out about 400 cc of blood and other stuff typically found in the stomach out of it. The blood looks just like the brownish stuff that Chris had previously thrown up. It is possible that his esophagus or stomach may have some sort of sores on it/them that are similar to hemorrhoids (but on the inside) which are responsible for the blood, as a result of improper pressure in the liver.

Chris ate what he could after he returned from the OR, and later at dinner. Altogether today he ate about 4 shortbread cookies (mainly to help absorb the medicine in his stomach), a slice of bacon, 4 grapes, 2 cherries, a few handfuls of cashews and a few bites of jello. He was able to get all of his afternoon and evening medicines down, including the new one needed to reduce the blood ammonia level (between last night and this morning, he took it 3 times due to vomiting, but we weren't sure that any of it got to work in him, so tonight's dose may well have been the first one to really go in, thanks to taking this liquid slower).

So, the bottom line is that Chris has fought valiantly for nearly 6 years against this beast of a disease, which typically claims its victims within a year. As strong and cooperative as he's been, Chris is still only human, subject to the failings of the human body. He really needs all of your prayers and good wishes for a miracle now. Thank you for supporting him for so long.

Joke of the day -- Time flies like an arrow. Fruit flies like a banana.

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, Artur, Keith, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, February 17, 2005 11:12 PM CST

Hi Everybuddy!

Today was not quite as tough as yesterday, but we can't say that it was easy either. Chris' belly continued to grow, although the physical limitations of just how far his body can expand seem to be in control of that expansion. By this evening, Chris had grown another 4.2 cm (close to 2 inches) in girth. This was in part due to additional, but necessary hydration matters.

Although Chris is carrying a lot of excess fluid in his belly, the rest of him is prone to experiencing some internal dehydration. The ascites (the collection of the fluid in the abdomen) is pulling fluid from the other areas in the body where it is needed. As it does so, it also pulls certain electrolytes (specifically sodium) into the fluid and away from the rest of the body. That's why Chris has to keep taking the salt pills: to replace that which is leaching into the abdominal fluid. The additional salt that Chris is taking is needed for good internal balance (to prevent seizures, etc.), but salt is dehydrating in and of itself. That pulls fluid out of the places where it is supposed to be. And so the cycle goes. We can't fix the sodium issue without also addressing the abdominal fluid issue, and vice versa. The last we heard, the oncologist had not yet heard from the local surgeon, who was supposed to have consulted with the NY surgeon about what to do about this problem. However, the oncologist did bring in a local pediatric gastrointestinal physician for her opinion about what might be going on inside Chris. Aside from studying Chris' history, she ordered Chris to undergo a Doppler ultrasound of the liver, primarily checking for internal pressure differentials, in the hopes that a clue may be gained.

Chris was regularly scheduled for a CT and a bone scan tomorrow, but there was an opening for a CT scan today. We took advantage of that, so Chris had to become "NPO" (nothing to eat) for a few hours again prior to the scan. All he could have was the CT contrast, which was mixed with Sprite, as well as some water. Actually, Chris handled that remarkably well, considering how heavy the contrast is on the stomach and the fact that Chris has not had a "real meal" in a very long time. He got through 18 oz. of the contrast/Sprite mixture, which is a lot to get into a belly that has no room.

Eventually he was called down to Radiology and directed to a CT scanner. As soon as he laid down on the scanner bed and the procedure was about to begin, Chris suddenly became green around the gills so to speak. Things were immediately halted while Chris tossed up what little there was in his belly. The scan continued without any other problems. Chris was very happy to hear that, for this scan, he did not have to tilt his head way back, as he sometimes does. Right now, his neck and shoulders are pretty sore, so he really didn't believe that he was going to be able to comply. Fortunately, that was not a requirement today.

The Ultrasound Department is right around the corner from the CT scanners, so that was his next stop. He did fine with that, too, even though the technician necessarily had to push the instrument into various places on and around his abdomen in order to get the pictures she needed for the Doppler ultrasound. She was new to Chris and was unaware of his history. That turned out to provide her with a good quiz on how well she knew her anatomy. She was very intent on her work, only asking Mom the occasional question: "how much of the liver was surgically removed? Was the gallbladder removed? What about the left kidney?" Mom thought the technician passed the test; she found the spaces where the missing body parts are supposed to be.

We do not have any scan results yet; the doctors are waiting for comparison with previous scans. It seems clear that there is still disease, but without reference points from the previous scans (performed at other hospitals), it is difficult to provide information about the extent of disease. We do know that the bone marrow aspirates and biopsies have demonstrated heavy infiltration of neuroblastoma into the places where the bone marrow is supposed to be. However, we do not as yet have a copy of the report, so we don't know what "heavy" means.

We also know that Chris' blood ammonia level was up fairly high today (84). High ammonia levels are indicative of a "sick" liver, which isn't able to clear it out of the blood fast enough. Interestingly though, we have heard (but not seen reports) that the other usual liver function tests were normal or only slightly elevated. The high ammonia level can cause confusion and sleepiness. That effect was noted on Chris, and could have been responsible for some of the edginess that he felt yesterday as well (while the ammonia level must have been climbing). Chris remained a little hypersensitive today, although not quite as bad as yesterday. He was often chatty in a somewhat nonsensical sort of way, and he constantly tried to fight the drowsiness. His head wobbled and his eyes fluttered frequently, even as he was mid-sentence speaking. His voice was uneven, frequently dropping to a whisper and sometimes trailing off. Then suddenly, Chris would awaken himself with a shudder and try to figure out whether he was in "Dreamland" or reality. Nonetheless, he simply could not seem to fall asleep, except ever so briefly during the CT scan, and finally for an hour's nap at around 6 p.m.

Mom woke him up at 7 p.m. since Dad had brought "outside" macaroni and cheese and cashews for dinner (along with some other potential snacks for later). She had a difficult time rousing him, reminding her of the poppies scene in "The Wizard of Oz." Eventually a friend from Mom's office arrived. That was good because Chris tried to wake himself by explaining to her how a handheld electronic device worked to download music from a CD player. Dad worked Chris enough to get him to the most alert stage he had been in all day as they ate dinner together. When alert this evening, Chris had enough energy to show a little of his sense of humor with his "angel nurse," to whom he was again assigned tonight. Chris also chatted with Cate for a little while, who again seems to have pretty good instincts on when to call. (It's difficult to tell when is best with Chris because there is always so much going on. Although there were others who called, there just wasn't enough time for Chris to wake up enough to talk tonight. We'll try to look for opportunities, based on how Chris is feeling.)

Earlier in the day, Chris was visited by one of the Child Life therapists. He was chatty and drowsy at that time, but he gave her an earful about how there should be more events and considerations for 11 year olds. What got him started on this subject was the fact that he was rejected from consideration for a clinical study by an outside group (presumably a social work one?) in which the subjects have to play video games. Chris wanted to "compete" in that one, but there are age restrictions: no one can participate unless they are over 13 years of age. Chris found that to be discriminatory, especially since he thinks he can hold his own against just about any 13 + year older around. The net result of his conversation with the Child Life therapist was a suggestion that they start an "in-house" video game competition (which Chris described in agonizing detail, right down to which wires to use to hook the machines together so that the competition could be real), ideally over at the Tampa clinic -- although Chris is willing to go anywhere to participate in it. The Child Life therapist patiently listened to Chris and seemed to consider looking into the feasibility of the idea. She told him that she'd get back to him about it.

In other news, Chris was out of his room for virtually all morning. His impetus was to remove himself from the baby who was his roommate (he really is a sweet baby), but Mom agreed because Chris was willing to walk (not ride in a wheelchair like he did yesterday) down the hall. He was too hypersensitive today to visit the playroom, but he did go down to the sun room for at least 3 hours. That's where he and Mom sat, as Chris worked on drinking his CT contrast, and they tried to play one of the trading card games. Mom was happy that the pain was under control enough to allow Chris to walk down there. He's not exactly super steady on his feet, but that probably had more to do with the drowsiness than anything else. Chris' pain medication was evened up to 1 mg of Dilaudid every 4 hours around the clock (along with the Benedryl chaser, to help deal with the itchiness that IV Dilaudid causes). That was better because it allowed Chris to have a little bit better range of motion, even though he still felt pain (achiness) particularly in his neck and shoulders. Throughout the day, Chris had to contend with the irritability again, as well as drowsiness.

The nurses who have known him the longest have taken note of it, but are hoping that he'll be feeling a little better tomorrow. That's because Chris is supposed to begin taking a new medicine to help bring down the blood ammonia level. He tried twice to take it tonight, apparently he needs a little food in his belly first. He tossed it up twice (the real issue is that the medication is too "heavy" for an empty stomach and Chris' stomach has no room in it, but Chris thought it was because of the water that he drank as a "chaser"). Tomorrow, Chris will try it again, but with crackers or simple cookies, in hopes that they may help the stomach absorb it. Today, Chris was only able to eat a few grapes, cherries and cashews. But he did better on the macaroni and cheese. He tried a chocolate milkshake, and liked it, but only had a few "bites." It was too hard for him to drink it with a straw, so Mom dumped it into a bowl so that Chris could eat it like regular ice cream. That was too soupy for his tastes. Tomorrow, Mom may teach him the subtle art of making "ice cream soup," in the hopes that it may be a better consistency. Chris has something else to which to look forward: his friend, Greg, has a day off school tomorrow. He and his mom intend to try to come for a visit. Hopefully that will help keep him a little more alert; he misses his buddy.

Joke of the day -- (Tongue twister) -- How much caramel can a canny cannibal cram in a camel, if a canny cannibal can cram caramel in a camel?

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, Artur, Keith, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, February 16, 2005 11:18 PM CST

Hi Everybuddy!

This has been a very tough day on Chris. After yesterday's tummy tap procedure, it was assumed by most folks here that Chris would be discharged today, assuming that his electrolytes and food consumption remained reasonably stable. Unfortunately, no one consulted Chris' body for this assumption.

Chris' electrolytes did remain reasonably stable (with the use of his salt pills, and by morning, taking Chris off of maintenance IV fluids). However, there were other significant problems.

The first is that, only one day after the tummy tap, Chris' belly is again nearly as large as it was before the tummy tap. During yesterday's procedure, about 3.4 liters of fluid was drained from his body before the bone marrow procedure was done. All by itself, that is a tremendous amount of fluid to come out of an 11 year old body. We had heard that right after that fluid was drained, Chris' belly was concave. As part of the bone marrow aspiration procedure, Chris was rotated from lying on his back to lying on his frontside (so that the back of his hips could be accessed in order to remove bone marrow samples). We heard today that by the time he was rolled over again onto his back, Chris' belly was no longer concave, but rather flat. By the time we saw him awake and in the gurney on the way from the postoperative suite to his room, Chris' belly was slightly rounded, but not alarming to us. Well, by the time this morning rolled around, Chris had gained another 4 or so centimeters in girth (about 2 inches). By this evening, there was yet another 4 cm in this rapidly forming expansion of his abdomen. The expansion was so quick that the bandage used to cover the tummy tap puncture site was stretched tight enough to begin tearing at Chris' skin enough to cause some seepage at the edge of the bandage.

We don't really know what's causing this rapid fluid accumulation. The lymphatic leak theory was only raised yesterday, and it remains just a theory. If it is true, it is very difficult to fix because it is so difficult to detect the source of the leakage and because it would require direct observation by the surgeon (meaning, Chris would have to be opened up). We have not yet heard back from the surgeon, who was going to check with the NY surgeon. We believe that something might have happened over the weekend, when Chris began to experience faster-than-usual fluid accumulation in his abdomen, but we don't know what that "something" was. We'd really like to know what's going on in Chris' body. Placing a device in Chris' belly to act very loosely like a beer tap in order to help deal with this situation comes with risks, primarily from potential infection but also from possible bleeding given the state of Chris' platelet situation (he doesn't have too many of them, even without being in chemo treatment, and those he has may not be "high quality platelets," meaning they are probably not quite as "sticky" as healthy platelets).

The next big issue is that Chris is experiencing painful achiness at various locations in his body: jaws, back of neck, both shoulders, legs, etc. The pain is intense enough that Chris has quite a bit of difficulty in lifting his cup of water, or pulling the bedtray closer to him, or even walking from his bed to the bathroom. He was extremely agitated throughout most (but not all) of the day. His current roommate is an infant, who is actually a rather quiet baby. But almost every time the baby squealed (which really wasn't that often, but Chris didn't think so), Chris startled or otherwise was overly sensitive to the noise. He acted out by silently shaking his fist in the direction of the baby (the curtain was drawn between the beds, so the baby's mother did not know). Chris continues taking Dilaudid (and Benedryl to help control the hives that he sometimes gets with Dilaudid) by IV throughout the day. That in turn made Chris feel fairly drowsy all day long, which he fought off for the most part, but that too frustrated Chris because he was not alert enough to play more sophisticated trading card games.

There was also some discussion today of switching Chris to a longer-acting pain medication solution. Although that has not yet gone into effect, the thought is that it would reduce the number of pills that Chris has to take at home and help even out the amount of relief that Chris experiences, since any medication needs time to be digested and processed by the body as it's getting geared up, then there is the time when it is wearing off. During both of those phases, less than full strength relief is felt. Right now, we're sorting out whether this pain is really going to be constant or not, and which pain relief option is best for Chris.

The leading theory for the pain is that it could be "bone marrow pain." We know from yesterday's bone marrow aspirates that there is still neuroblastoma in the marrow. The biopsy results are not back yet, so we don't have an idea as to how much disease is crowding out the marrow in his case. Nonetheless, bone marrow is in the middle of the bones, especially the large bones. If neuroblastoma is filling up the space in the bone where the bone marrow is supposed to be, then that can cause pain. Another possible explanation for the pain was that it could be related to the swelling that's going on inside Chris, especially in his legs -- which at one point were not able to support him to be able to walk to the bathroom -- which remain swollen with excess fluid. That is not a leading theory because Chris is experiencing pain where there is no swelling and because the Dilaudid is able to reduce the pain to a manageable level.

In addition to pain killers, Chris received albumen to help pull the fluid away from his tissues and Lasix to help get him urinate it out of his body. Prior to the Lasix, Chris felt the urge to urinate a couple of times, but nothing came out. After the Lasix, Chris was able to relieve himself of what are probably "normal" amounts but not enough to provide relief from the ever expanding abdomen. The original idea was to discharge Chris after he finished with Lasix and a blood test to make sure that the sodium level was reasonable decent. However, the rapidly expanding belly is a serious issue that was cause to leave Chris in place.

Chris did not have a completely miserable day though. He was able to eat a little bit today (in no particular order): extra rich ice cream, part of a Rice Krispies treat, 1/2 hot-dog, 1/2 slice of cinnamon toast, 1/4 of a large dish of jell, etc. (At this point, calories are more important that the nutritional quality, although if we can get that at the same time . . . we have to get some food -- any food -- down into his belly whenever the opportunity presents itself.) Our friend Cate had extremely good timing when she called to check up on Chris. He was "buzzing" on his medications and was extremely chatty at that moment. So he talked to her for a pretty long time. Chris was also visited by his hospital teacher (she actually came to spend time with him twice) and a child life therapist, who was there primarily to observe Chris (who was trying to teach Mom how to play a new trading card game) in order to assess whether Chris may need more hands on help from her department. (The nurses who have been taking care of Chris for over 5 1/2 years and know him pretty well were concerned about Chris' mental condition today because it was so "out of sorts" for him, even when compared to his transplant days. They thought that maybe the child life department might be able to be of some more targeted assistance.) Later in the evening, Les came by to visit Chris and try his hand at one of the trading card games. They didn't get too far into the game, but it looked like it was going to be a "draw" at the time they had to quit for the evening. Both hoped that more time would be available for a "real" game next week.

After a very trying day, we also felt encouragement from especially Chris' night time nurse. This is the first time that he's taking care of Chris. So, when he came by to check up on Chris for the first time tonight, among other things, he whispered to Chris -- in a loud enough voice that Mom and Dad could hear -- that he had neuroblastoma when he was young. So, aside from the "been there, done that" camaraderie brought by that sort of comment, which to the best of our knowledge Chris has never heard before (Chris did take an instant liking to this very nice man), there was a renewed sense of hope imparted on Mom and Dad.

Chris is facing incredibly tough odds right now, just as he's done before. There are differences though: his body is under incredible strain right now, along with the long term strain it has already had to endure. That in turn puts further limitations upon the very limited range of options that Chris is likely to have (a new assessment of those options will be made after the scans are completed on Friday and into next week). But as one nurse observed today, Chris has made a liar out of every dire prediction that has been thrown in his direction so far. Each time things looked grim, "something" appeared on his horizon, just in the nick of time. So here we are again, at yet another difficult crossroad, when we were met by an angel of a nurse tonight who, simply by being alive and attending to Chris' medical needs, reminds us that there is always cause for hope. So, we'll continue to look for the next "something" on the horizon.

Joke of the day -- (thanks Michelle) -- What do you get when you cross a dunce with the god of love? A stupid cupid, of course!

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, Artur, Keith, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, February 15, 2005 9:04 PM CST

Hi Everybuddy!

The guys had a very exciting night last night. Chris tossed his cookies throughout the night, and when he didn't have any cookies left, he just basically dumped stomach fluid. He also didn't urinate much. Dad tried to let him sleep in late this morning since he could neither eat nor drink. Even that wasn't meant to be.

There was some concern about Chris' sodium level before the tummy tap, so he got a bolus of saline with extra sodium in it before heading downstairs to the surgical suite. Chris also linked up with some "old friends:" his favorite nurse, his teacher (they talked books), and the "Lady of Scans" (she does his MIBG scan and runs interference for Chris).

Down in the surgical suite, Chris met with more of his medical crew, who have known him for quite a while; they joked around a bit before things got serious. Chris had a serious bout of cramps (his belly was swollen to the point of being what appeared to be rock solid and pushing up toward his chest -- it also was likely responsible for his swollen legs), but held off on asking for any pain management medication, knowing that he was to get some anesthesia soon.

Chris was in the OR for quite a while, but there was a lot to do. A record-setting 3.5 liters of fluid was removed from his abdomen. After that, bone marrow aspirates were performed at the usual four locations on his hips. After the tummy tap, the surgeon came out to talk with us; he said that he would speak with the New York surgeon to see what his thoughts were about whether it was time to investigate different ways of removing Chris' abdominal fluid problem.

After waiting a little over 3 hours, Mom and Dad finally met Chris, who was alert as he was being wheeled out of the recovery room and munching on a red popsicle. Hmm. He was in very good humor (for a little while anyway -- he was pretty easily irritated by nurses pestering him, baby crying, etc.; that situation improved as Chris was able to eat). Back at the room, he began working on figuring out how his Valentine's gift (an electronic music device) works, then he and Mom started a practice game in advance of Chris and Les' upcoming card game competition.

Chris eventually ate a quarter of peanut butter and grape jelly sandwich, about 8 or so grapes and a couple of chips. Later, Dad returned to the hospital with some pizza, of which Chris ate about a quarter. Considering how he hasn't been able to eat recently this was a pretty credible eating effort, which also included some ice cream.

Chris evening was full, too. He received more platelets, then some red blood, then some night time Lasix (bummer) and then more red blood. No one was fond of him getting Lasix at night, particularly since last night wasn't conducive to sleeping.

Medically, Chris' belly has really shrunk (almost 10 cm). So far, he hasn't had any vomiting or nausea. He has burped a few times and he tried to urinate a couple of times before the Lasix was to begin, but nothing came out. The surgeon hypothesized that there could be a microscopic lymph system leak responsible for the abdominal fluid collection. If so, they are difficult to detect, although direct observation could be attempted at some point using a dye to try to identify the source of the leak. These types of leaks can heal by themselves but it sometimes can take a very long time. He also thought that it is possible that Chris' sodium might be leaching into the abdominal fluid, which is why he can't seem to get ahead of that problem. All of this is food for thought as we and the doctors continue to do an analysis of what to do next for him. We'll see . . . For now though, Chris is resting comfortably, awaiting the Lasix.

Joke of the day -- (thanks Michelle) -- What do you get when you cross a dunce with the god of love? A stupid cupid, of course!

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, Artur, Keith, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, February 14, 2005 9:49 PM CST

Hi Everybuddy!

Happy Valentine's Day to you all. We hope that you each enjoyed the day in some manner or another. Chris knew last night that today was going to be a rough one, so he asked to "do" Valentine's Day (meaning gifts and cards) then. We happily obliged. He was right; last night was a better time to "do" it as he and Dad enjoyed the hospitality of the Tampa Clinic all day and are now in-patient at All Children's Hospital tonight.

Chris felt exhausted when he went to sleep last night. However, he promptly awoke at about 2:30 a.m. as he vomited what little there was in his belly at that hour. It was mostly mucous. Then again in the 7:00 a.m. hour, Chris again vomited, after having only taken a bite or two of food. This time the vomiting continued for about ten minutes. That's a very long time to be retching. Most of what was coming up was mucous. A couple of times, Chris felt like he was choking on the stuff, and at one point, Mom thought he was going to pass out. Somehow, he got through it all, although obviously weakened. After waiting a few minutes, Chris was able to eat two saltine crackers for breakfast -- just enough to help dissolve the medicines that he had to take.

It was a good thing that Mondays are a regular clinic appointment day; that's right where the guys headed (they by-passed the school completely today). They drew a variety of blood tests today and the guys turned in a urine sample. Chris also had an EKG and Echocardiogram. He also vomited periodically (even a few bites of a Mel's Hot Dog) and Dad thinks that is when the doctor got serious about admitting Chris to the hospital tonight. Chris also received platelets today in anticipation of tomorrow's surgical procedure (he was 25 and he needed to be above 50). Chris spent most of the time either sleeping or watching movies. The chid life therapist also sat with him a bit to see if he needed/wanted someone to talk to (you know, other than Dad or Mom).

Shortly after Dad arrived with Chris' Mel's Hot Dogs, so did our friend Les. Chris promptly vomited (OK, it was no reflection on Les' being there). Les than proceeded to keep both Chris and the medical staff amused. What Les didn't know it but Dad did was that he and Dad use to work with the brother of one of the nurses so Chris thought that was cool. Shortly after the transfusion ended but before Chris could be released, Mom came by sporting a new neck brace thingy for a problem she's having. It was Chris' turn to dish out some sympathy. Mom left before the guys were released to put the finishing touches on the hospital bags that are mostly always packed and ready to go.

After the platelet transfusion and the mandatory waiting period, the guys headed right home to Mom. As Chris is on clear fluids and will be eventually NPO up until tomorrow's tummy tap, they didn't even stop for a bite to eat. Chris packed his "toy bag" and then the guys left the girls on their own at the house. Chris watched a movie on the trip across the bay to the hospital.

Admission and all at the hospital went well and Chris made it to his room to meet his roommate: Chris. We'll have to keep a watch on the comings and goings of medicines with two Chris' in a room.

Before we close this update, we wanted to share with you a bit of an email Valentine message that we received from another parent of a child facing Neuroblastoma. That child is currently recovering from a bone marrow transplant. It really puts things into perspective, as one parent wistfully explains why he can't do the traditional kind of Valentine activities this year:

"But that's not our reality right now. Ours is the crushing weight of the day to day to existence of clinic visits, endless medications, and a struggle just to get through the day. Its wearing a procedure mask and sleeping apart so that you don't get the same cold I have that would keep you apart from [our son]. It is scans and treatment and the horror of what might be.

Yet I feel little of the weight. As [our son] barfs up his NG tube and you phone the oncologist on call to find out what to do about the cyclosporine that lies in a puddle on the dining room table, I don't feel misery and sadness for what we have given up.

Instead, I feel a sense of wonder. For under everything is a solid foundation of love between you and me. That's what gives me strength. Sure the romantic side is a little rusty. Its hard to find a baby sitter skilled in the medical arts and harder still to forget whatever it is we are escaping from. But I know these things will pass.

What endures is the warmth from your smile and the sense when you lay in my arms that everything is right the world. And that is as stronger now than it was 25 years ago. You are strength and beauty and wonder and love.

So what can Hallmark or Purdy’s or FTD add to that?"

Joke of the day -- (thanks Uncle Tom) -- I tried to get my bicycle to stand up...but it was two tired.

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, Artur, Keith, Stephanie, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Happy Valentine's Day!

Good night Mom and Genie!

Love,

Chris, Alison and Pat

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

Sunday, February 13, 2005 10:13 PM CST

Hi Everybuddy!

It was a mom and son kind of day as Dad needed to catch-up on some things that didn't fair so well while he and Chris were away. Mom went to wake him up this morning, but she found him quietly sitting on the sofa in the den with a barf bin in his lap. Chris told her that the vomit was coming so she might as well let it happen before starting breakfast. He was right, and he handled it in his usual professional manner. Afterwards, Chris moved on to another breakfast of garlic bread and grapes (could it be a Greek thing?) and managed to keep it all. The next stop was church, where Chris needed for some medicine for pain at his "invisible scar," located at the bottom of the abdominal fluid load that he is now carrying. (Chris' belly is pretty big right now.)

The two then headed off to do what many American families sometimes do: shop at the mall. Well, they thought about going there directly from church, but they had to drive by the comic bookstore and well, of course they had to stop . . .. They eventually made it to the mall. Mom's goal was to share some time together with less of the time pressures that he feels during the week, as well as to shop, eat and exercise. (Although we participated in the six mile walk yesterday, Chris spent most of the walk riding in "Ronald" the stroller, which did as a superb job getting him through the scrubby woods near the beach as it did through the concrete jungle of New York City.)

Chris managed to drink part of a Slurpee and eat only half of a hot dog (no, not a Mel's) and part of a dumpling. It took a while for Chris to eat this though because he kept looking like one more bite might put him over the edge for vomiting. Eventually he finished and was ready to walk around. Chris and Mom slowly walked through about 3/4 of this mall, during which at some point Chris needed a Benedryl for some abdominal pain. While meandering, they visited two of Chris' favorite shopping haunts: a jewelry kiosk and a game store. He likes the jewelry kiosk because of the lady who works there and he collects the Italian charms. He bought a surfer anklet today though. At the game store, he got the final game packs for "The Simpson's" playing card game (get ready, Uncle Tom and Cousin Jane, for a challenge game whenever Chris sees you again.)

Finally, Chris could go no more, so he and Mom headed home. Once there, Chris and Mom settled in for a bit and worked on filling out Valentines for his classmates, until Dad got them motivated to go to dinner and grocery shopping. Our success in getting him to eat a good size dinner failed, but at least he kept it all in. Not surprisingly, Chris didn't really want to go to the supermarket but managed to get through it all. His mission was to find breakfast and snack foods. He went off on his own to do it and was reasonably successful. The true test will be graded as the week progresses.

Chris spoke to a lot of people today. First was Greg, who had something to do this morning and by the time he was finished, Chris was getting tired from walking around the mall. Later, Chris received Valentine's phone calls from Grannylyn and Granddad, and just a little later from Grandma and Grandpa.

Medically, Chris' belly has really grown again, especially over these past few days. Based on this experience, Chris may have to return to the once a week tummy taps. Chris is still more sensitive than he normally is; it doesn't take much to bring out the tears. Chris recognizes that he just doesn't feel like himself, which frustrates him, but he doesn't know what to do about it. The enlarged belly caused him anxiety in New York. An instability in his electrolytes can cause a similar effect. In any event, we'll check with the doctor tomorrow to see what, if anything can be done to help Chris feel better.

Joke of the day -- (thanks Uncle Tom) -- I wanted to learn how to make ice-cream, so I started attending sundae 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, Irmel, Donald, Andrew, Artur, Keith, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, February 12, 2005 10:11 PM CST

Hi Everybuddy!

It was almost what most families would call a normal weekend day. Most of it was spent walking on a ten kilometer walk at nearby Fort DeSoto State Park, a fort that used to guard the deep draft shipping entrance into Tampa Bay. We started the day early since we needed about an hour to get there and we were going to meet with Les and his wife Ingrid for the walk. Dad got us up early enough for our 7:30 a.m. departure to the park. We were trying to get there early before part of the park closed to incoming traffic to allow for the running of a biathlon. We didn't quite make it though.

We arrived shortly after the sheriff's department prematurely closed the road network that led to the start point of our walk (apparently unaware that there was more than one event going on at the same time as the biathlon) and were forced to park a mile and a half from where the volksmarch started. Fortunately, Les and Ingrid arrived only moments after we did and were able to park next to our van. After reassembling "Ronald" the stroller (for its first use ever in Florida), we headed off. Genie the Wonderdog also participated in the walk, and spent most of the time either hanging out with Les or Mom. The weather was beautiful but cool, and the route was very scenic as it wound through the old coastal artillery battery location, a forest trail and a walk on the beach. Once we got to the end of the volksmarch route, Genie and Dad ran back to our camper in order to bring it back to where the rest of us were so that we all could get to our respective cars.

We all decided to have lunch together. Chris asked to go to either the Outback Steakhouse or Dairy Queen (now there's a range of choices). Since we didn't know where a Dairy Queen was at that end of Pinellas County, but we knew that the Outback was a little more "parent-friendly," we opted for that. Unfortunately, it was closed until mid-afternoon, so we ended up at a Boston Market, where both Les and Ingrid subtly inspired Chris to eat as well as he could. Genie got some meaty leftovers, so she wasn't left out either.

On the way home, we made a stop at a bookstore, where Chris bought a couple of humor books. We also stopped at another store, where Chris bought some game cards for Les so they could compete in their next challenge: a Japanese card game. Les is pretty sure he's going to be the champion for that game, too. Chris has some serious doubts about that.

Chris and Mom started a "Harry Potter" movie marathon this evening, but couldn't even get through the first movie; both of them fell asleep. Chris tried to eat some pizza and take his medicines at the beginning of the film. He failed (vomited), but then came through on a second effort and an re-dose of medications. Chris said that he gets a sharp pain sensation in his throat immediately before he vomits. This time, Mom heard the "rumble" in what seemed like a half-second before the eruption. Mom wonders whether this could be heartburn. Chris already takes one heartburn medication first thing in the morning, but maybe that's a medication that can be readjusted or changed. We'll see what we can figure out with the doctor on Monday.

In other news, Chris also received a blessing using water that had been sent to him from Lourdes, France.

Medically, Chris' belly has gotten bigger even more and we're hoping that waiting until this Tuesday wasn't a bad idea. Once we got home this afternoon, Chris carried our coats from the van into the house. Just as he bent slightly to put them down, he cried out in intense pain at what he calls his "invisible scar." It is at the bottom of his belly, where the greatest part of the abdominal fluid weight is carried, and the pain is similar to what some pregnant women feel as the pregnancy advances close to term. He felt that pain a couple of other times, but not quite as intense as when he set down the coats. He also had some "itchy-like" abdominal pain tonight, which was helped by some Benedryl. In addition, Chris has been weepy lately (and he sometimes hyperventilates when he's crying), somewhat reminiscent (but perhaps a bit less intense) of what he was experiencing in New York. Chris' situation is so complex that it is difficult to tell whether he's just tired from having been out all day, worn down from disease or from treatment and current medications, a combination of some or all, or something else altogether. No matter what the cause, Chris seems to still need help with his coping skills. Mom is already in progress trying to get some counseling set up for him here in Florida.

Joke of the day -- (thanks Uncle Tom) -- A Doberman pincer told his puppy a bedtime story. The story goes "Once upon a Time. The End." The puppy says "Daddy, why such a short tale?"

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, Artur, Keith, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, February 11, 2005 9:35 PM CST

Hi Everybuddy!

Chris had a long clinic day as the doctor decided to "tank him up" with platelets before the weekend got under way. His platelets were at 22, which is just a little above the transfusion point, but Chris had those "dark areas" under the eyes and a fair number of bruises here and there. It was a good call and it was able to be done right after school. He still had success at eating (and maintaining) his breakfast of garlic bread and grapes. After a short tour at school to perform his safety patrol duties, Chris and Dad took off for the Tampa clinic.

At the clinic, Chris got his first crack at a new kind of "freezy spray" (they stopped using the older brand because it was flammable). The new one stung but then again, it appears that we may have sprayed it a bit too long. If the next attempt at using it (Monday) doesn't work, we'll be forced to go back to using Emla cream. Chris had both a routine blood test and "full panel" drawn this morning. Today's blood results were: white blood cells rose to 4.6 (normal: 4.0 - 12.0), hemoglobin dropped to 10.0 (normal: 11.5 - 14.5), platelets were 22 (normal: 150 - 450), while the ANC rose to 2700 (normal: 1400 - 7400). Chris was cleared to return to school and invited back for platelets. In the afternoon, Dad was told that Chris' potassium was still good but his sodium had dropped to 125. So Chris was told to go back to 2 salt pills three times a day (that news brought on a tear or two).

Chris' belly has gotten bigger: he went from 73.5 cm on Wednesday to 74.2 cm today. He'll be going in Tuesday for a "tummy tap." Dad also proposed that the scheduled bone marrow aspirates be done while he is "out" on Tuesday due to the "tummy tap," in order to save wear and tear on Chris. Although this sort of combination has been done at the other hospitals to which Chris has been, for some reason Dad was told that it would be a problem (like surgeons and oncologist don't mingle). The oncologist thought it was a good idea when she heard about it; she got it lined up for this Tuesday. Chris' schedule next week is shaping up as follows: an EKG and echocardiogram on Monday, a "tummy tap" and bone marrow aspirates on Tuesday, a CT scan and bone scan on Friday, and a MIBG scan the next Wednesday. Texas Children's Hospital came through with a CD of Chris' electronic data from his last CT scan done there on January 19th. Chris did not need any additional pain medications at school today.

After the first clinic visit this morning, Dad dropped off Chris at his reading teacher's classroom. They had just started "snack time," but Chris hadn't wanted to stop at the store on the way to school to get one, so he did without and read. School went well. Because he had finished several things that the rest of his class still needed time to complete, he spent much of the day reading "for fun." Chris performed his patrol duties, then he and Dad headed for the second clinic visit. This visit was to transfuse platelets. It went without incident and Chris watched the movie "Spy Kids 3D."

Once free of the clinic, the guys had to work on some shopping errands. One stop was to an education store, but both guys were surprised to learn that it closes at 6 p.m. each weekday, so they failed on their mission there. When Mom called, Chris asked if we could stay home and eat but that it be Papa Johns pizza. We agreed. Chris tried to eat pizza (he picked at the cheese on only one slice) while watching the movie "Young Frankenstein." He didn't quite get it though -- dinner that is. All went well until right at the end of dinner. He then had one of those "no notice" vomiting capers; he's had a number of them recently. We're not sure what's going on -- whether this could be related to the medications or something more ominous. Chris has always been a pro at managing such things before. We'll mention these episodes to the doctor on Monday. Upon returning home this evening, Chris was able to speak with Uncle Alex.

Medically, Chris had a fairly decent day save for losing dinner in a quite dramatic fashion.

Joke of the day -- (thanks Uncle Tom) -- NASA recently sent a number of Holsteins into orbit for experimental purposes. They called it the herd shot round the world.

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, Artur, Keith, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, February 10, 2005 9:30 PM CST

Hi Everybuddy!

Today was much like a replay of Tuesday: Chris had a "normal" day. Chris continued on with his garlic bread and grapes breakfast and managed to keep it all down. His next step was a "pony express" drop-off at school, meaning Dad just dropped him off in front like most kids do, since there were no medical issues to which to attend. He managed to go half of a day without calling in for some help, but finally had to ask for some medication to deal with upper arm and knee pain; he received a Tylenol (he had already received 1 mg of Dilaudid).

In the early afternoon, Chris' doctor from Texas called Dad. She has been in contact with the local doctor, and she wanted to check in personally to learn how Chris was doing as well as to let us know that she will be sending some things to the local medical team here and requesting information after next week's scans.

When Dad picked up Chris after school, he asked if Chris wanted to go for a snack. Chris asked to go to Mel's Hot Dogs. The guys went there, where Chris ate one hot dog and took his afternoon medicines. He had also eaten a chicken filet sandwich earlier for his school lunch. Chris mentioned that he had some free time at school, where he worked on the "basics" of his string games. He said that it was like going to "string school" or "cotton college." He learned a new maneuver called, "Scissors." After completing the afternoon errands, he and Dad returned home. Once home, Chris did his homework. He then opted to watch TV for a bit until Mom got home. We decided to go to a place for dinner that we hadn't been to since before leaving in October. Chris ate a few mini-corndogs, but lost his dinner just as we were leaving. During dinner though, Chris learned that a recent launch from Cape Canaveral had been dedicated to his dear friend, Allie (he had seen the very meaningful emblem a week or so ago, but didn't realize that it had already launched). Chris commented that it's sad when his girlfriend left earth twice without saying good-bye (meaning both her untimely death and the launch). He still misses her.

Once home, we all watched the end of the movie Chris had been watching earlier today, "The Mask." He likes Jim Carrey. Chris is looking forward to seeing the newest "Mask" movie soon.

Medically, Chris had a fair day, but for vomiting dinner and the pain flare-up at school and at bedtime.

Joke of the day -- (thanks Uncle Tom) -- What do you get when you cross a pit bull with a collie? A dog that bites your leg off and runs for help.

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, Artur, Keith, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, February 9, 2005 9:54 PM CST

Hi Everybuddy!

Chris had close to a normal school day. He had to go to the clinic but didn't need to make any calls for any pain medications. He started today with a breakfast of garlic bread and grapes. Amazingly, he held it all in. After a short tour at school to perform his safety patrol duties, Chris and Dad took off for the Tampa clinic. Chris' goal at the clinic was to try to get a reduction of some of his medications. He also wanted to talk about pain management; almost seeming as if to help make the point, Chris' arm began to hurt and he got a rash on his right wrist while waiting in the playroom.

Today's blood draw was just for a routine blood test. Today's blood results were: white blood cells rose to 4.6 (normal: 4.0 - 12.0), hemoglobin rose to 11.2 (normal: 11.5 - 14.5), platelets were 34 (normal: 150 - 450), while the ANC rose to 2700 (normal: 1400 - 7400). Chris was cleared to return to school and he didn't require any transfusions. Dad also received some lab test results from the other day. The doctor stopped Chris' potassium tablets and cut back on his salt tablets (as an experiment to see how well Chris can handle it). She also told Chris that he must make a good effort eating in order to make up for the difference in salt intake. Chris' belly has gotten bigger; he went from 71 cm on Monday to 73.5 cm today. Nonetheless, Chris asked to hold off on this week's scheduled tummy tap and opted for one next Tuesday. The doctor also decided to start him on a pain medicine; he'll be taking 1/2 of a Dilaudid twice a day. The new pain centers, including the new one behind his right knee (after dinner, another new one just below his right thumb, which due to timing, the doctor didn't know about) persuaded the oncologist to get the scans done as early as possible, hopefully throughout early next week. As it stands now, he has a clinic visit and two heart tests scheduled for Monday, and a tummy tap on Tuesday.

After the clinic visit, Chris asked to stop at a store to pickup a snack for the newly re-instituted snack time for fifth graders. Dad was more than happy to comply; it's somewhat unnerving to be able to easily see and feel Chris' spine. He's really skinny but with a big belly. Dad dropped Chris off at his classroom (it seems rare that they are actually there).

After school, the guys headed right home. Chris wanted to chill out, eat a snack with his medication, do his homework and then watch a movie. Dad was putting in a new network component so that Chris' computer could be more reliably connected to the Internet. Meanwhile Chris watched an old movie, "Top Secret." He thought that it was hysterical. The guys then headed out for dinner, but then decided to go back home and cook. It was nothing great: hot dogs, macaroni and cheese, garlic bread, and grapes, but Chris ate well enough and enjoyed the reduced amount of medications. Unfortunately, he needed to add another medication at dinner: the pain management one. Chris has pain back behind his knee but also below his right thumb. We'll be glad when we can see the upcoming scan results. Chris also spoke with Grandma and Grandpa, but missed out on a call from Uncle Alex. He also spoke with his homebound teacher.

Medically, Chris had a fairly decent day despite the two new pain centers. This generally is not a good thing for his disease but it could also be attributed to the vaccine being at work. We're definitely on the lookout for "plan B" though.

Joke of the day -- (thanks Uncle Tom) -- A sandwich walks into a bar. The barman says, "Sorry, we don't serve food in here."

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, Artur, Keith, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, February 8, 2005 9:29 PM CST

Hi Everybuddy!

Chris had a normal day, but only normal in a "Chris" sort of sense. After an interesting wake up by Genie (she dropped her stuffed ball on him and then laid in his legs), Chris opted for a breakfast of macaroni and cheese, sausage, and grapes. He unfortunately did not keep it for too long. His next step was a drop-off (and leave) at school (no clinic visits today). Sadly, he didn't manage even a half of a day without calling in for some help. Chris is now experiencing some fairly intense but periodic pain in his left upper arm and the left side of his buttocks and thigh. He believes that they are muscular pains but he doesn't really know for sure. Mom handled that call from the nurse (Dad must have been in a "no service" area at the time that call came in) and authorized the nurse to give Chris a Tylenol. Dad then headed over to the school after a few minutes to see whether the Tylenol was going to be sufficient. It was.

Dad then called the clinic to see what progress they were making with respect to scheduling Chris' next series of scans. That turned out to be an empty hole, so it will be discussed with the doctor tomorrow along with Chris' new pain centers and his desire for a change in medication. There is too much happening inside Chris right now to wait too long for scans.

When Dad picked up Chris after school, he asked if Chris wanted to go to a bookstore (duh -- of course!). They stopped by one of course, where Chris picked up the "graduate" version of string games book. When he got to the checkout counter, the clerk there just happened to be a string game aficionado. She demonstrated some such games and Chris did likewise. There are some things in this book that neither of them knew (unbelievably, there was no one in line behind Chris at the bookstore -- very rare indeed).

Once home, Chris took a break and ate a snack so that he could take his afternoon medicines. He then did his homework and then finished watching a Batman movie. Just as that ended, our friend Les called and said that he was coming over to beat Chris at -- something, anything. When he arrived, they decided on tabletop soccer. After a full length game, Les edged Chris out by a three point lead (a pretty close game). Since he had time for a bit of another game, they played again. This time, Chris rallied for the win. Genie was trying to "cheer" for Chris, but when she jumped up to sit beside him, she only managed to keep knocking his arm. Les' visit was a short one, but Chris had a great time (hopefully Les did too). Mom arrived just before Les had to go to coach rugby and be interviewed by a local TV station. Before he left, we gave him a belated Christmas gift and sang "Jingle Bells" while doing so. It was poorly sung, but Chris felt that he got back at Les, who sang some weird "Go Scotland" song every time he scored a goal during the first soccer game. It was a fair trade as Les sort of sounded like an out of tune bagpipe (and that's being generous).

In an effort to "fatten" Chris up again, Mom called in from her office and had Chris decide what to do for dinner. Although Dad was ready to cook, Chris opted for Mexican food. Sadly, although he kept what he ate (with the help of Zofran), he didn't eat all that much. If he doesn't get some improvement soon, we're soon going to have to resort to special drinks or the like. At least he doesn't appear to be losing weight (it's hard to tell exactly though because of the fluctuating abdominal fluid levels).

Once home, everyone rallied on getting the trash out and then goofed off. Chris started working on one of his "how to" books. This one book teaches one how to play the recorder. Chris and Dad performed one duet, during which it was obvious that all recorders (and ok, recorder musicians) aren't created equal. Chris' new recorder had a much more mellow sound. It's a start though.

Medically, Chris had a fair day but for vomiting breakfast and two pain flare-ups, particularly in his left upper arm. We are eager to get on with testing and, unlike last summer, Chris won't wait for things to "fall into place." We're still searching for Chris' next options, should they be required.

Joke of the day -- (thanks Uncle Tom) -- Did you know that people tend to tell worse puns as they get older? That's why we call them groan-ups.

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, Artur, Keith, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, February 7, 2005 9:27 PM CST

Hi Everybuddy!

It was an interesting school day for Chris: he came and went and then came back again only to leave again (almost a school with drive-thru service). On top of that, his homeroom teacher wasn't there today, so the guys didn't know to where they were to return from the clinic. Chris started his day with a few bites of a waffle and a few grapes for breakfast, and he managed to keep it in him. Chris' patrol duty went well. While Dad was signing him out to go to the clinic, he learned that Chris' teacher wasn't going to be in today. Since there was no substitute teacher available, Chris' class was divided among the other fifth grade classes.

The Tampa clinic staff were their usual efficient selves; things went pretty well in terms of getting in and being seen. All sorts of blood samples were drawn today, including special blood draws and a routine blood test. Today's blood results were: white blood cells dropped to 3.6 (normal: 4.0 - 12.0), hemoglobin dropped to 10.7 (normal: 11.5 - 14.5), platelets dropped to 16 (normal: 150 - 450), while the ANC dropped to 2300 (normal: 1400 - 7400). Chris received an invitation to come back to the clinic in the early afternoon for a platelet transfusion. For some reason, they wanted him back by 1:30 p.m., which meant that he'd have to go back to school only to leave school again before the end of this school day.

After leaving the clinic (the first time), the guys headed straight to school, where Chris and Dad hunted for his class. They found one of his classmates, a girl who is one of Chris' "guardian angels." She told Chris that he and she were assigned to a certain teacher. On the way there, Chris stopped at his reading and writing teacher's classroom; that teacher said that she was "keeping Chris" and told the girl and her escort to pass that on to the teacher to whom Chris had been assigned. It reminded Dad of some of the things that some of the hospital teachers have said or done with Chris. Chris really likes that teacher, so it was fine with him. Sadly, he only was there for three hours before Dad had to pick him up to return to the clinic for the transfusion.

After school, the guys headed over to a store so that Dad could get a repair part. Chris shopped around but didn't see anything of interest to him so they headed home. Chris originally wanted to access the Internet on his computer. However, the way his computer is connected to our home network wasn't working, so he and Dad worked on some other things and Chris helped Dad repair something. Chris then started watching a Batman movie. Mom arrived a little while later. Chris made an appeal to go to a new Dairy Queen for dinner. Mom and Dad agreed as there was a shopping errand to perform, although to be honest, they weren't thrilled with the prospect of a DQ dinner. They were happily surprised to find that DQ is quite unlike any DQ we've ever seen: the menu is much wider, and the interior was more like a Starbucks Coffeehouse than a DQ. It was pleasant. After dinner, we took care of the shopping errand.

Medically, Chris had a decent day, although taking his many pills is really getting Chris down. He is particularly "over" taking salt tablets, although he knows that he still must. He told Mom that he is so tired of taking all of the medications that he rather just die. Well, she talked him out of that by telling him that there is probably a less drastic solution that that one. This time, Chris was clearly complaining about his pills -- especially the salt pills -- despite his choice of words. He has a point, so we're rethinking what we give him and will ask the doctor to do so, too. She had a variety of blood tests drawn today so maybe on Wednesday we can deal with this issue. He really dreads those salt tablets. In fact, Chris said that he really thinks that he will be able to eat better when he's not taking the salt pills. He mentioned feeling "different" again, but this time it was clearly in the context of how terrible the salt pills make him feel. Chris thinks that if he can stop taking the salt pills, that he'll be able to maintain his sodium level naturally (through diet) within about a week; he knows that he's going to need some time for his belly to readjust. He even thinks that he might be able to help his belly swelling if he can "be left alone" (by which he meant reduce his medications). Maybe on Wednesday the oncologist will be able to help us figure out how to let Chris take a little more control over these aspects of his life.

Joke of the day -- (thanks Uncle Tom) -- What do you get when you cross a potato with an onion? A potato with watery eyes.

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, Artur, Keith, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, February 6, 2005 9:13 PM CST

Hi Everybuddy!

Chris quietly mentioned to Mom at church this morning that the inside of his body feels "different." After verifying that Chris wasn't complaining of any particular pain, Mom tried not to visibly react to his statement. We are concerned that this is ominous though since some kids can "tell" when things aren't going well. Chris' statement could also be something as simple as his belly is swelling again (which is true) or he's been having a difficult time since November. Chris did not react as if he feels that his body is failing him though, so we'll just have to wait and see.

Chris was already awake and playing a video game when Dad went to awaken him this morning. Not even Genie heard him (he sometimes plays with the sound on "mute."). Chris had a good breakfast today and managed to keep it down. All went well and was quite "normal," but for Chris wanting to walk slowly into church from the parking lot. During that walk, Chris also expressed some frustration at wanting to do things at his former pace but being unable to do so. After Mass, Chris said that he felt better, at least from an emotional perspective, and that although he wasn't particularly hungry, he'd rather go to Pizza Hut for lunch.

Mom took him to Pizza Hut. Chris had barely entered the door at Pizza Hut when he was welcomed to a chorus of "Welcome back Chris!" from the employees who have known him over the years. (We hope that's because they miss them rather than that their sales have been down since he's been gone for so long.) They took his drink order and started making a custom Personal Pan Pizza for him before we could even get seated, and he was allowed to visit the pizza buffet. Chris wanted a couple of slices of dessert pizza (basically apple pie made on a pizza rather than a pie shell), so he ate most of those while waiting for the Personal Pan Pizza to be baked. (We have been bending the rules, just as we did after his transplants, to allow Chris to eat just about anything that he thinks might "stay down" in order to give him a chance to gain some weight.) Chris ate a few bites of the Personal Pan Pizza, but he just couldn't do it, even though his heart was in it. It had nothing to do with being "full," although it could have been the salt pills. It might have been something else too because Chris rather quickly started feeling nauseated and was cramping. Although he tried to fight it with Zofran and some other medications, things just "went south." Chris lost his lunch as discretely as he could manage it. With cheeks bulging and a mouth full, Chris simply got up from the table and walked to the garbage can behind the soft drink dispensing area. Mom, who followed him up there in order to make sure he was ok and to clean him up, doesn't think that any of the patrons noticed what had happened. After cleaning himself and thanking any saying good bye to the employees, he and Mom left. They walked slowly to the nearby craft store, where Chris wanted to walk around. He tried, but he felt weak, so he and Mom returned to the car. Chris felt better afterwards and came home to a "second" mini lunch, which he managed to keep down.

Chris then put the finishing touches on his special school project on Indiana. It was completed but his printer started acting up. Dad spent a good deal of time trying to troubleshoot the problem but with no luck. Dad moved the project to another computer which is attached to another printer and finally got the thing printed. Chris will hand it in tomorrow. Whew!

Good news came to Chris as he learned that Greg could come over to play this afternoon. After visiting a park with his family, Greg came over and joined Chris for an afternoon of fun: inside and mostly involving video games. One game involved a Sony EyeToy that puts the player "into" the game (you see yourself on the screen or control what's going on in the game with your body movements). Their favorite video game today involved skateboarding and Dad was the big challenger. Although he gave the boys a run for their money, they eventually outscored the old guy. It involved a lot of body movement and is very good exercise.

Once Greg left and Mom had returned from shopping, we gave Chris a variety of choices for dinner. He decided to go out to Red Lobster. It and the rest of our community was deserted as it seems everyone was staying in to watch the Super Bowl. Chris picked through his shrimp dinner unfortunately. He did eat some ice cream once home though.

Medically, Chris had fair day save for losing his lunch. We had rather wished that his insides didn't "feel different," but one can only hope that it's the vaccine in action. He had no pain today but did have some cramps during lunch and dinner.

Joke of the day -- (thanks Uncle Tom) -- What do you get when you cross a movie with a swimming pool? A dive-in theater.

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, Artur, Keith, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, February 5, 2005 8:13 PM CST

Hi Everybuddy!

Chris had a nice day today, but he unfortunately didn't get to link up with his friend Greg. His day started early enough, just a little later than a normal school day. Still, he wasn't feeling all that well so he called Greg to see if they could meet after Greg's sports events rather than before it. He did make it through breakfast without losing it though. Once finished breakfast, Chris played on his computer before he began putting the finishing touches on his report on the State of Indiana (the home of the first train robbery and first successful goldfish farm)! All that's left to do is package it and present it to his class. Earlier he made a wooden race car, and for extra credit, designed and made his own Indiana T-shirt.

Dad and Chris also started work on sorting through what seems like hundreds of t-shirts that Chris has acquired, his other clothes, and the repacking of the hospital boxes. Dad had to leave e for a bit to do a shopping errand before one store closed. Unfortunately, Dad's afternoon plans were derailed when the car that he was driving got a flat tire. Dad headed off to get the tire fixed while Chris went back to playing video games with Mom and Genie occasionally watching. Genie sits on the couch and actually watches Chris play (ok, sometimes she snoozes, but so does Mom sometimes).

Dad had some time to kill while waiting for the tire problem to be resolved, so he walked over to a nearby mall and found the last book in the Edge Chronicle series for Chris. Meanwhile, Mom and Chris traded in a bunch of old video games that he no longer plays at a local shop. They decided to join Dad at the mall, who, while wandering around the mall, found some Batman movies that Chris has been wanting to see. Once Chris knew about them, he wanted to set up a movie night (complete with tickets) for later in the evening.

While Dad went to pick up the car, Mom and Chris made a quick sortie to a nearby toy store, where Chris bought a couple of trading card packs for those down times at the hospital. Once reunited, the gang headed to a nearby restaurant where Chris had some shrimp. He slowly muddled through his meal and medications. The server realized that Chris was taking medicines for more than a head cold. She eventually decided to reward Chris for working through dinner and his medications by bringing him an unsolicited and free fresh, warm brownie with vanilla ice cream. Mom and Dad were very happy to see Chris do a real job on the ice cream (Mom helped with the brownie). Chris told Mom that her brownie was getting on his ice cream! He decided that the server deserved a happy face pin (and she did)! She looked genuinely happy to receive one and put it on instantly.

After dinner, the gang headed home where Chris went to work setting up the "theater" (or, as he spelled it, "theiter") while Mom and Dad did some chores. Chris made a ticket for each of us and designated a place on the bed to sit (including Genie who carried hers under her collar). Chris picked the movie "Batman Forever" for tonight's feature.

Medically, Chris had another decent day and fought off a little nausea without losing any of his meals. Chris continues to look very thin and tired looking, sort of like after transplant. He had no pain today but did have a few cramps during dinner. Another interesting thing lately: Chris' hands are back to being "warm" and he is more cold tolerant again.

Joke of the day -- (thanks Uncle Tom) -- Gravity - It's not just a good idea, it's the law.

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, Artur, Keith, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, February 4, 2005 9:57 PM CST

Hi Everybuddy!

It was a pretty "normal" school day for Chris. He did his morning thing but hit one speed bump: he lost some of his breakfast. Not to be deterred, he finished breakfast before he and Dad headed off to school where he went to his patrol post and Dad went to sign him out of class. Chris showed up seconds later followed by Mom, who was bringing in some snacks for Chris' class "Fun Day Friday" festivities.

The Tampa clinic staff apparently weren't expecting us, but Dad felt that Chris needed to get a routine blood test and we were a bit concerned about Chris' headaches. He's only complained of about four throughout his whole life, and three of them have been within the last three weeks. After some leading questions from the oncologist, we established that Chris' headaches coincided with his "tummy taps." Dad knew that for two of the headaches, but Chris remembered that the third headache was also after a "tummy tap." The headaches are suspected to be caused by a drop in fluid pressure, which can cause a headache similar to those caused by dehydration. Having said that, she also added a head scan to the upcoming series of scans.

One reason for today's clinic visit was to see about Chris' platelet level. He had some significant bruising where they had adhered some monitoring terminals on his shoulder yesterday. Even though Chris had received a platelet transfusion two days ago, it had already dropped to 29. Chris didn't require a platelet transfusion today though. Today's blood results were: white blood cells were 4.0 (normal: 4.0 - 12.0), hemoglobin dropped to 11.7 (normal: 11.5 - 14.5), platelets dropped to 29 (normal: 150 - 450), while the ANC was 2400 (normal: 1400 - 7400).

After leaving the clinic, the guys headed straight to school, where Chris linked up with his class at his reading and writing teacher's classroom. She has the students reading some neat things, and gave Chris some "fun" homework to catch up for the two evenings that he's had. He also got some makeup homework from his math teacher. Chris had a good time, even without it being a Fun Day Friday.

Something happened that hasn't happened in quite a while: Chris was actually at school for his class picture. It was a little confusing because there was a "class picture" earlier in the year, but Chris was away doing "medical stuff" for that earlier picture. The primary purpose of today's photo shoot was to get a group photo of each classroom. Chris liked the fact that today both an individual picture and a group class picture were taken in front of a beach scene backdrop.

After school, the guys headed straight for home. Chris wanted to relax and play a video game and get his homework done, in case he and Greg could get together. They may have a chance on Saturday morning or so. Chris got his homework done just as Mom arrived home (she left her office a little early in order to try to miss the traffic hassles in downtown caused by security requirements for the President's arrival for a town hall meeting this evening). We decided to head to a movie that we've been putting off due to being in two different locations (Tampa and Houston). We saw the movie "Racing Stripes," which we enjoyed. It's not an Oscar contender kind of a movie, but it was light and funny. Mom appreciated how well they made the set in South Africa look like the horse farms of Kentucky. After the movie, Chris requested to go to dinner at -- Mel's Hot Dogs. If he'll eat it, we'll go; so we did. Chris didn't finish his two hot dogs but made a credible attempt. We really want him to gain some weight as he looks skinnier than he did when he came out of transplant in 2001.

On the drive to and from both the movie theater and the restaurant, Chris went fast asleep. We hope that its due to effort of getting reintegrated into "normal life" rather than it being a symptom of his disease. In any event, he clearly needed his rest.

Medically, Chris had a decent day though and only lost a portion of his breakfast. He had no pain today. Dad got a call from school indicating that Chris' hearing felt "different" to him again. Dad asked the nurse to give Chris one of his Sudafeds, which shortly remedied the problem. We will discuss this with the oncologist as this is the fourth occurrence of this problem.

Joke of the day -- (thanks Uncle Tom) -- My first job was working in an orange juice factory, but I got canned...couldn't concentrate.

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, Artur, Keith, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, February 3, 2005 9:15 PM CST

Hi Everybuddy!

Chris and Dad spent a very long and tedious day at the hospital today, which was frustrating because it was our "home" hospital (it has been a while since Chris has been there though). Dad woke Chris up early as they had to beat rush hour traffic to get to the outpatient surgical suite in time. Chris had to be NPO (no food or water) so all he had when he awoke was three medications with about two tablespoons of water. Traffic wasn't as bad as Dad had anticipated and they made it to the hospital in plenty of time. Chris finished watching a movie while enroute.

Getting through admissions was no big deal, but then they got into the surgical area. Much to Dad's surprise, the nurse assigned to Chris noted every one of the
"reactions" that Chris has ever had to over his entire clinical history on Chris' red allergy wristband. (Dad lists them on a handout for the medical staff, but they are not reactions that warrant an "allergy band -- well, anywhere including this hospital, until this morning). Dad only hopes that they weren't entered into Chris' online medical record since such notations can be difficult to remove. Save for that speed bump, things progressed well and Chris was actually taken in for the "tummy tap" a little early. The surgeon willingly took a specimen tube from Dad and filled it with abdominal fluid for testing at Texas Children's Hospital. However, it was more of a big deal than Dad anticipated. The surgeon came to the waiting area after an inordinately long time (based on Chris' other seven "tummy taps"). He told Dad that all went well and he took out 2.5 liters of cloudy-looking fluid (the equivalent of 1 1/4 two liter bottles of soda). Since the fluid was cloudy, the surgeon sent it in for testing. To Dad's amazement, he didn't see or hear from Chris for another hour and a half. Normally, Dad is permitted to be with Chris as soon as he wakes up in recovery. After a few queries, Dad learned that Chris was indeed awake and would be back in a bit. It took longer.

When Chris was wheeled into his room, he looked very much slimmer. Because he lost so much fluid, they had given him some albumin. He was a little uncomfortable since he lost so much waistline (he also lost six pounds based on yesterday's weigh-in). He was doing well and they let him eat lunch after an hour. He ordered some sausage, a hot dog, and some barbecue potato chips. He didn't care for the sausage or hot dog but he ate most of his potato chips. Chris also started taking his missed medications and supplements.

At that time, Chris started developing a little pain and nausea. Dad waited a bit to ensure it wasn't just from eating a bit and taking the medications. It increased in severity and Dad let the nurse know. She spoke with Chris and basically took a wait and see approach. It continued to worsen so Dad asked for some pain medication for Chris. None had been ordered for him and the nurse came in thinking that he just ate too much (since he had been out for the procedure). That normally doesn't bother Chris but today while the discussion was going on, he got a bit frustrated (as did Dad). He vomited. After about fifteen minutes, the pain did subside. Now, did he vomit because he didn't get the pain medication or did the pain go away because he vomited? We'll never know.

Dad and the nurse were not having a good time as blood still needed to be drawn from Chris and shipped to Texas today. She wouldn't draw the blood nor would she let the guys go across the street to the oncology clinic so that they could draw the blood and get it to the blood lab in time for shipment. It was frustrating and apparently no doctors were around to give her guidance. Dad was about to take Chris out against medical advice or whatever when the anesthesiologist arrived and authorized Chris' release. It was the most frustrating day that we've ever had in our own hospital.

The nurses at the St. Pete clinic showed some resolve and agility; two nurses went to work drawing the blood, preparing it for shipment, and getting across the street to the hospital's blood lab. (These nurses have been working with Chris for almost six years.) The abdominal fluid was also put in the shipping device after Dad carved the shipping styrofoam up a bit to provide it a secure place in the shipper. They did a great job in short order. After that, both Dad and Chris breathed a sigh of relief because they didn't think that they'd make it despite telling everyone in surgery what the requirement was for today. All-in-all, it was just added frustration. Chris does look a little slimmer but losing that much waistline and weight will take some adjustment.

Chris wanted just to head back to Tampa. Enroute they called Mom and decided to meet her at a restaurant. He and Dad picked up a new type of thermometer at a drug store along the way. While there, Chris found a new book on how to play the recorder. At the restaurant, they met Mom. Chris normally loves its grilled cheese sandwiches. Tonight though, he picked at his food and medications. Once home, he managed to finish his medications with a few bites of brownie. All-in-all, not much of a day for trying to gain back a lot of lost weight (since the surgery in November).

Medically, Chris had a decent day though. He got nauseated and eventually vomited after the "tummy tap" procedure but Dad thinks it was because a proper pain management plan was not in place. Chris was much more active after the procedure than he was later in the evening. Just before bedtime, Chris was moving slow. He was tired but had no fever. Chris mentioned some abdominal pain after the procedure but it diminished quite a bit after he vomited. Despite the platelet infusion yesterday, he developed bruises around where the sensors were place near his shoulder.

Joke of the day -- (a Chris original) -- Mom mused about why the Lakers were named the Lakers. Dad suggested that maybe people from LA were called "Lakers." Mom wondered if they might have been named for a nearby big lake nearby perhaps formed by a dam. Chris, who had his head down because he wasn't feeling particularly well at the time, then suggested that the team could have been called the "Dam-its." (No offense to our basketball fan friends.)

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, Artur, Keith, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, February 2, 2005 9:12 PM CST

Hi Everybuddy!

It was a short school day and a long clinic one. After the usual "morning stuff," Dad dropped Chris off at school. Dad then went to our usual Tampa clinic before heading back to school to pick up Chris, who he had an appointment with his local surgeon to see if he felt that Chris needed a "tummy tap." Chris was basically in class for an hour, just enough time to catch up with his classmates in his reading class. He is reading a "really cool" book about the pioneers and the Native Americans (a variety of tribes). Dad let Chris' teachers know that he probably wouldn't be back after he departed today.

Dad was happy to find that late rush hour traffic wasn't an impediment to getting to the hospital; Chris either read a book or watched a movie on the way over to St. Petersburg. When the guys arrived at the surgeon's office, quite a few of the people there remembered him despite not having been there in about three years. Chris had a good time and participated in the discussion with the surgeon, who agreed that Chris needs to have a "tummy tap" tomorrow. There was some concern about Chris' platelet level, but Dad had an appointment for a routine blood test all worked out at the St. Petersburg clinic. Prior to the full operation of the Tampa clinic, Chris was routinely seen at the St. Petersburg clinic. So, upon his return there today, he greeted at the much expanded St. Petersburg clinic like a missing hero. The place is now three times bigger than the last time he was there. While waiting in the waiting room, the guys blundered into one of our favorite families, whose daughter Christina has been getting treatment for quite a while, too. it was a happy reunion, and joint plans were made to go to the upcoming Strawberry Festival.

Once called into the back, one of our "old nurses" (young but has been treating Chris for numerous years) ran the blood test. Chris' platelet level was below what the surgeon specified, so not surprisingly, Chris needed a platelet transfusion. The guys ran into a "speed bump" about insurance, but Dad was pretty sure that it was an internal problem within the hospital. Once that was resolved, the platelets were ordered (thanks blood team yet again). Since there was some time to kill, Chris and Dad went out to lunch and had a picnic in the back of the camper while watching the movie, "Recess: Summer Vacation." Chris said it was like the "old days." Considering that half his life has been spent fighting cancer, it made sense to Dad.

Once back at the St. Pete clinic, things went quite well. Dad learned that Chris has lost enough weight to warrant using a shorter needle to access his mediport. (His weight has been misleadingly high due to the amount of abdominal fluid that Chris carries around; he is very skinny overall.) The directed donor platelets went in like a charm with no difficulties, unlike his last transfusion of platelets mixed from more than one donor in Texas. Chris' mediport remains accessed for tomorrow's "tummy tap."

Chris made the request to stop by "his bookstore." It is a seventy year old family owned bookstore that has interesting books (like a Tom Swift adventure book). He was looking for one particular book from the Edge Chronicles, which he found, along with another book about how to shoot marbles.

The drive back to Tampa in afternoon rush hour traffic was slow but somehow the camper managed to glide through most of it. Chris passed the time watching one of his favorite movies (having already finished his book): "Matillda." He really likes that movie although he didn't think as highly of the book. On the way back, Mom called about dinner and made a suggestion that was magic to his ears: Red Lobster. It's been one of the places that he's been talking about for several months and he finally got there tonight. He started on his new book while waiting for dinner to arrive, but once the food arrived, Chris ate all of his popcorn shrimp.

Medically, Chris' energy level was good and his appetite is very slowly improving. Chris remains weaker than he was before left home in October. He climbed into the camper a little easier than he has all week, but it's obvious that the recent trip to New York really took a lot out of him (even the senior oncologist in St. Pete noticed that). His tummy girth has stayed about the same, but the surgeon thinks that he can make things better for Chris. So he decided to proceed with the "tummy tap." This surgeon has actually performed most of the big surgeries for Chris, who feels comfortable with him, too. He is an old friend of Chris' surgeon in New York; it was obvious to Dad that the two of them had spoken about Chris before our meeting. Chris did not mention any arm pain today.

Joke of the day -- What do you call a robot that always takes the longest route round? R2 detour.

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, Artur, Keith, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Happy Groundhog Day!

Love,

Chris, Alison and Pat

Tuesday, February 1, 2005 9:47 PM CST

Hi Everybuddy!

It was a nice day for Chris even though it was a "terrible Tuesday." At the beginning of the day, we weren't sure how much Chris would be able to participate in his usual Tuesday activities. Chris was glad just to be back in town to experience them again. Chris had a normal day at school from start to finish. It was also a pizza kind of day: Chris had pizza for breakfast, "dunch," and a quesadilla for dinner (he had a chicken sandwich for lunch though). He managed to keep all of that food in him today, too.

When Dad picked him up after school, Chris let him know what his homework was and once home, began to do it while watching a new movie. He had to do it in a short period of time since he had to eat (in order to take his afternoon medications), and do his homework quickly in order to make it to his religious eduction class on time. He did it with minutes to spare.

Chris likes "God school," where he can meet up with his buddy Greg. When Dad asked about what Chris might have missed during his long absence, it turned out to be nothing that he hasn't studied before either in directly in "God school" or while working on Cub Scouting religious awards. Since that class was a half hour later than it used to be, Chris and Dad barely had time to make it to the scout meeting (where he also was able to visit with Greg and Keith). That meeting was mostly focused on the information needed for the upcoming "bridge over" into Boy Scouts and earning the Arrow of Light award. Chris volunteered to lead a song that serves as a memory aid for the scout law but sung to "Yankee Doodle." The "old" Chris was back, at least for a few minutes: he enjoyed hamming it up. The song itself is a good tool, too. Chris got tired towards the end of the meeting as it was his first full day at school and "terrible Tuesday" in quite some time.

Once home for the night, Chris helped put out the trash, then sat down with Mom while she checked his homework. We attempted to do the first "official" dog pile since we've been back. Chris played with Genie but he was just too tired by then to do a traditional "dog pile." Genie didn't mind; she was still the center of attention and was perfectly happy.

Medically, Chris' energy level was fair and his appetite improved. His tummy is just a little bit bigger but not as big as during the "old days" of twice weekly tummy taps. We'll see what the local surgeon says about it tomorrow. Chris had a little arm pain with no specific cause. It could be when he was resting his head on it after the scout meeting, the vaccine doing its thing, cancer doing its thing, or who knows. Later in the evening, Chris thought that the pain felt more like a muscular ache perhaps due to the heavy backpack. He might have a point on that. He hasn't carried a backpack in a while, and right now, there's a lot of stuff in it since he's returning to school after having been gone so long. In addition, he's much thinner and bonier than he used to be so the backpack doesn't fit him the way that it did before. Yet he can't really tighten the straps due to his enlarged belly. This evening, Chris thought that maybe he used that arm more to help stabilize the pack. Dad's been helping with the backpack too, so hopefully this little ache will remain little and soon go away.

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

Love,

Chris, Alison and Pat

Monday, January 31, 2005 9:39 PM CST

Hi Everybuddy!

Chris had a really cool day: everywhere he went, people freely expressed their happiness that he was back home. After the usual morning stuff, he headed for school to perform his patrol duty. Because he had been gone for so long, it had been changed, so Chris ended up waiting for Dad in the library while Dad worked on doing the paperwork necessary to reenroll Chris in school (he was automatically disenrolled when he was enrolled in the New York school district by the hospital). Chris won't get a report card for this semester when his classmates do within the next few weeks. Enough of his classmates saw Chris this morning to start spreading the news that he's back!

After the guys linked up in the library this morning, they headed for the Tampa clinic for a routine blood test and another blood draw. Chris was welcomed royally at the clinic, where there was even a banner that welcomed him back! Clinic staff members sang "Happy Birthday" to Chris and presented him with a bag that had a Christmas and birthday gifts and other neat things. Chris was speechless! He did get to joke around a bit and was a bit sorry that he forgot his magic tricks. The nurse he normally torments accessed his mediport and drew several samples of blood. Chris didn't require any transfusions, although he will probably need platelets if the surgeon decides to do a "tummy tap" on Thursday. Chris and the nurse joked about a bit before the doctor came in to exam him and get briefed on what has been happening to him. Dad and Chris filled her in and had some good discussions. She intends to order some scans in the near future to get a baseline where Chris is now. She is intends to "stay the course" of the clinical trial unless it jeopardizes Chris' health; we wholly agree with her. She has some chemo-related ideas about what to do if things start to get worse for Chris. It will be a rough call that we hope will not need to be made. Dad then worked on several clinic options in case the surgeon does or does not decide to do the "tummy tap" and from which clinic to get blood support. It sounds like an "easy" thing, but is actually more complicated. Chris and Dad will be heading across the bay to St. Petersburg a few times this week though.

Once free of the clinic this morning, Chris wanted to head right back to school. Upon arrival, his classmates were no longer in their regular classroom; they had moved to the art classroom. When Dad opened the door to the art classroom, all of Chris' classmates stopped what they were doing and welcomed him, regardless of whether or not that's what the teacher had in mind (which she did). It was a very nice reception.

When Dad picked Chris up from school this afternoon, they worked a bit with the teacher. They were both happy to have learn that despite the 3 1/2 month absence, Chris remains either right on track with his class or ahead of them in a few areas. We are very grateful for Chris' teachers in New York and Texas for that! Dad had to take Chris out for a "dunch" as Chris couldn't receive some of the medications and supplements that he was to get at the appropriate time while he was at school. The school nurse is great about things, but there are just too many medications for the noon timeframe. So after school, Chris asked to go to his beloved Mel's Hot Dogs. Dad didn't object in the least (Chris is still very skinny despite having a belly full of fluid). At Mel's, Chris was again greeted famously, and Mel even came over and sat with him from time-to-time. Chris loves his stories and we got caught up on his family. Chris had a cool time.

After eating most of two hot dogs, the guys made a stop at a hardware store to get some parts to repair some things that didn't bear up during the 96 days away from home. Chris got very tired walking around (which wasn't too much). When Dad asked why he was so tired, Chris told him that he had played kickball today. Even though he had a designated runner, kicking took a bit out of him and he even managed a double while "at bat." Chris still has a long way to go in terms of building strength and stamina. One day at a time though.

After Mel's, the guys then headed home and just arrived as the neighbor's daughter was leaving to head back to college. He wanted to say "Hi and Good-bye" before she left. The two have some nice conversations. Once inside our home, Chris took a look at his new Boy Scout Handbook and then started on his math homework, which he finished in short order. He then continued on trying to solve his computerized Nancy Drew Mystery. Mom got home a bit later; she went back to his room to watch him work on "his case." Soon after, Les came over for a visit. He and Chris started a verbally animated fussball game on Chris' new fussball table. Les told Chris that he has never lost in fussball (he actually did play professional soccer a long, long, long time ago). At the half, Chris was in the lead, but the game fell apart as dinner had arrived. After dinner, Les watched Chris work on "his case."

Medically, Chris did not have any problems today save for a little nausea after dinner. He also got tired while walking around the hardware store.

Joke of the day -- Knock, knock. Who's there? Les. Les who? Les have some pizza.

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, Artur, Keith, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, January 30, 2005 9:58 PM CST

Hi Everybuddy!

It was a "Mom and Son" kind of day as Dad spent most of the morning putting Chris' new computer together and into our family's computer network. Dad also loaded a new program that is a favorite for Chris -- a Nancy Drew detective game. They just don't make any Hardy Boy games.

Chris and Mom got things going today as a tired Dad fell back to sleep. Chris and Mom had a nice breakfast together and then Dad bid them both adieu as Chris headed out for church and the beginnings of his long awaited "Unbirthday Party." It was apparent to Mom that the church's choir had not forgotten Chris. Several members wished him well, and one was waiting for him with gifts.

Mom and Chris picked up Greg after church and headed for Chuck E. Cheese for a couple of hours of fun. The boys did have fun, too, especially when they cooperated to win an arcade style video game in which they had to fight bad guys while "riding" on a rollercoaster. Chris ate moderately well, but unfortunately he lost his lunch a few minutes after he finished. His stomach just doesn't seem be able to hold much. That was the first time that Greg got to see first hand some of the "stuff" that Chris has to endure as a cancer patient. Greg was cool about it, and helped Mom block Chris from view of other patrons there. Always the professional about such things, Chris handled the situation well by making use of the empty drinking cups at the table. Right after the incident was over, Chris felt better. The boys just laughed it off as "one of those things" and moved on. Chris looked very tired at Chuck E. Cheese, so they decided to go home, even though they only used about half of their tokens. Those tokens will be waiting for their next Chuck E. Cheese adventure, so that's not a problem.

Once home, Chris and Greg came back to check out Chris' new computer. By then, Dad had everything up and running, even the detective game. After a bit of sleuthing, the guys headed out to the den to play a video game with Dad. Not too long after that started, another of Chris' friends, Keith, arrived and took Dad's place. Keith had also recently been in the hospital on his own birthday and was still in a wheelchair and in traction. That doesn't slow him down a bit. The three boys had a great time with the video game until Mom stopped it to do the birthday cake thing and the piñata. The piñata had ribbons to pull on the bottom, one of which was supposed to release a trap door when pulled. Despite the three blindfolded boys' best efforts, the trap door didn't open to release the candy, when even the last ribbon was pulled. Not a problem. The guys then tried kicking it, like in karate, and finally had their way with it. Keith managed some powerful kicks despite being encumbered with the wheelchair.

Mom had a special treat with the birthday brownie (brownies at Chris' request): magic candles. Keith caught on quickly, but Chris kept trying to blow them out until Mom let him in on the secret. He had fun though. Once through with the brownies, the boys went back to the video game and then on to a new tabletop soccer (or "Fussball") game. Shortly after that, Greg had to depart, and not too long after that, Keith's family arrived.

It's a big family and they even had their dog with them. Genie was in high heaven as the two dogs got along quite well (although not as well as Genie and Hooch get along). All of the kids fell right into playing. Chris tried three of his new magic tricks on them. Although he had the hype just about right, he forgot how to do the tricks. That in itself was funny, although he thought less of it than the others in the audience. It was fun.

After the party wound down, Chris asked to stay home and have some macaroni and cheese, grapes, and a hot dog for dinner. In hopes of trying to get some food in his belly, we did so. He ate fairly well then, but not quite as much as he might ordinarily.

Chris closed the day out with Mom and Dad's help in getting things ready to return to his school tomorrow. He keeps telling Dad that he's going to introduce himself to his classmates as an "exchange student." It could be fun and is more close to the truth than not. Chris was in better spirits today and quite happy about his birthday party. It wasn't until bedtime, when he was very tired, that Chris began to feel a little weepy. He was worried about whether he is going to be able to keep up with others at school and with his after-school schedule all week. As before, Mom tried to calm him down by asking him not to think too far out into the future. If he's tired now, then he should sleep tonight, then take tomorrow as it comes. We'll take this week as it comes. There is no doubt Chris is much weaker than he was the last time he was in his regular class. However, they all know that he's been in the hospital for a long time, so we don't think the transition will be as bad as Chris thought it might be at bedtime. His biggest concern was what may happen after school since he anticipates that he'll probably be very tired. Mom told Chris to just take it as it comes. If he's too tired to do his usual after school activities this week, then maybe we can postpone them. But he may find that he's not as tired as he thinks he might be. So, we'll just find out tomorrow how tomorrow will go.

Medically, Chris did well, except for losing lunch. He did have a little "heart" pain but no pain medications were needed. Other than overall fatigue, he was fine.

Joke of the day -- (thanks Uncle Tom) -- "If we aren't supposed to eat animals, why are they made of meat?"

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, Artur, Keith, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, January 29, 2005 10:32 PM CST

Hi Everybuddy!

Chris and Dad were both very happy to be home, although they spent the day in somewhat different ways. Upon awaking, Dad got started on the big job of unpacking, washing and reorganizing what returned home along with him last night, as well as doing the computer maintenance. Mom split her time between helping Dad with those household chores and playing and hanging out with Chris. He spent most of his time relaxing around the house and playing with some of the new games he received for Christmas but wasn't able to play with before (especially the Gamecube games, since he only had access to Playstation 2).

Chris wanted to hang around the house today, even though he knew that "pirates" were "invading" the city in this year's Gasparilla Parade. That was just too much, considering that he just arrived home last night from a very difficult and long journey. In the afternoon though, Chris asked Mom to drive him around the neighborhood to a couple of shops that he missed, including the comic book store. He walked a bit, tired and rested momentarily, and kept going. Although he is still very thin (but for his swollen belly) and weak, Chris seemed stronger than he was the last time Mom saw him a couple of weeks ago. His walking is slow but steadier, but he still has trouble with climbing -- such as in and out of our camper/van.

Chris was in better spirits today, happy to be home and looking forward to goofing off tomorrow at his belated birthday party. It will be a very low key affair, at Chris' request, and will be more like an "ordinary" weekend -- but Chris hasn't had an ordinary weekend in about 3 1/2 months. That's what he wants. That's fine with Mom and Dad too because it allows Chris to have fun without having to worry too much about his currently somewhat weakened condition. He's looking forward to tomorrow's goof off time.

Medically, Chris did well, except for losing breakfast. At bedtime, he also mentioned having felt a mild pain on the crown of his head that was fleeting. He also mentioned having felt a similar pain at his "heart" earlier in the day but didn't think it was significant enough to mention. No pain medications were needed today.

Joke of the day -- (thanks Uncle Tom) -- A day without sunshine is like -- night.

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, Artur, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, January 28, 2005 11:39 PM CST

Hi Everybuddy!

Well, the much awaited day has arrived: Chris and Dad are finally home. Not only that, but Chris was greeted at the airport with some banners and balloons held by his friend Greg and his family, Cate, Mom, and the Bock family (Chris remembers celebrating at an office Christmas party a year ago at their house). Now that's coming home!

It was a day of "firsts," too. The first time Chris has been in Florida since he's turned 11 years old and the first time in 2005. The first time "Ronald" the stroller has been in Florida (and Chris has used him for five years). It is also the first time that all of the family and all of our "stuff" has been together. For a minor eternity, Dad's Cousin Bruce let us store Ronald and a box of "things" we needed only while staying at the Ronald McDonald House in his apartment on Manhattan. That helped our stays there immeasurably (thanks Bruce).

The guys had put a good dent into packing yesterday, so today was finessing the remaining stuff into the luggage that we had. After waking up, showering, and then breakfast, Chris headed off to school. Dad stayed back and finished packing and began cleaning the room in earnest. Chris got back just in time to help move some of the furniture around so Dad could vacuum underneath the stuff. Dad picked Chris up from school and his unusually efficient teachers already had a report card for him. It is filled with "A's" and one "B." They pulled Dad aside and told him that they're really going to miss him as he was a "serious" student yet was lots of fun. The teachers there were pretty serious, too and they had one of the best classroom environments he's seen on the road.

The Houston Ronald McDonald House is very "structured and procedure oriented," so it was a slow and deliberate process getting through outprocessing. When the cab showed up though, they realized that Dad wasn't kidding about wanting to get checked out and they hustled to do so. All-in-all, the RMH in Houston was a good place to stay.

The cab ride to the airport was uneventful save for some traffic that our skilled cabbie safely got around. Southwest Airlines did an excellent job getting them checked in, but in adhering to apparent tradition, both Chris and Dad got the complete security check. As it was a bit early for the flight, the guys ate dinner at the airport. The flight went well and both Chris and Dad read Hardy Boys books.

Once the guys got off the tram at Tampa's main terminal building, they received quite a surprise: a full welcoming committee. We are very grateful for all who came to welcome them home. After some lengthy hellos, we, assisted by Greg's family, collected up all of the bags at baggage claims and moved them to our camper. Chris was happy to have his buddy there for that process. Greg was funny as he insisted on moving the heaviest handtruck of luggage all the way through the airport terminal back to the camper.

Once home, we let Genie go wild, unpacked things (mostly birthday gifts for Chris that had arrived in Florida) and some things from his class at school. Dad got the car unloaded and began the unpacking, cleaning, and repacking process. Chris wandered around and got reacquainted with home.

Medically, Chris had a great day except for his ears going weird during school. One ear begins to "hear" differently from the other. Dad gives him a Sudafed and the problem goes away a few minutes later.

Joke of the day -- (thanks Uncle Tom) -- Why are there so many Smiths in the phone book? They all have phones.

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, Artur, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, January 27, 2005 10:57 PM CST

Hi Everybuddy!

Chris had to report to the hospital at 8 a.m. this morning. Dad took him over there "NPO" (meaning nothing to eat or drink), just in case there would be a decision to do a "tummy tap" today. The ultimate decision was to not do it. That means that Chris has to remain relatively stable until at least next Thursday, which is the next anticipated opportunity for a "tummy tap."

While we do not have complete information from today's blood tests, Dad was aware that Chris' platelet level was at 39, the bilirubin was down to 0.9 and the sodium was a little low at 131. Because of tomorrow's anticipated flight home, the doctor ordered a platelet transfusion in order to try to boost it up above 50. Despite Dad's recommendation that Chris receive "single donor platelets" (meaning that the entire bag of platelets to be transfused come from only one donor), Chris received "mixed platelets" (meaning that the transfused platelets had been combined from more than one donor). As typically happens when receiving mixed platelets, Chris broke out in hives and at one point even vomited. In fact, Chris' mediport had to de-accessed then re-accessed. He did not receive all of those platelets, but he did get enough to bump him up to 69 (a post-transfusion platelet check was done), which is good enough to get him home on a plane.

Other than that, Chris felt pretty good today. He passed part of the time of this 9 hour hospital day by watching more DVD movies. His wish for Papa Johns Pizza was granted, too. Because Chris was at the hospital for so long, he could not attend the "school" at the RMH. Meanwhile, Mom fielded a telephone call from someone who works for New York City Schools, who was trying to make sure that Chris had properly been disenrolled from its system (as opposed to being a truant) and had checked in with his home school. Mom explained that, no, Chris is not yet back in his home school, but yes, we're looking out for his education. Actually, Mom appreciated that the system cared enough to make to try to make sure that Chris' educational needs were being met, even if he was never a New York resident.

But for the transfusion related issues, there was no pain today. Chris is looking forward to returning home tomorrow night for the first time since just before Halloween last year. In some ways, it's almost as if he's not sure that it's really going to happen. But right now, it appears that "all systems are go." We're all wondering how Genie is going to react. We'll let you know. (Because the guys will be arriving home fairly late, it is possible that tomorrow's update may actually be sent on Saturday. We'll play that one by ear.)

Joke of the Day -- (from Grandma and Grandpa's friend) -- What a guy does in a boat: Heroes.

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, Artur, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Wednesday, January 26, 2005 10:14 PM CST

Hi Everybuddy!

Chris woke up a little slower than he has in the past; maybe he's starting to adjust to being in the Central Time Zone. In any event, he was able to eat a nice bowl of cereal before heading to "school" this morning.

He didn't have to spend all day with the teacher though. He and Dad were able to spend the afternoon at the zoo. It's a lot bigger than they realized, so they were able to only cover about one quarter of it. Of what they saw though, Chris enjoyed the sea lion show the best. Dad has been encouraging Chris to walk in order to try to build up the strength that he's lost as a result of being in the hospital for so long. Today Chris walked about 1 1/4 miles, so that's pretty good under the circumstances.

Dad also walked Chris around a shopping area, where Chris got the added benefit of finding "Snood" for GameBoy Advanced. Until now, Chris thought that game was only a computer game; now he can play it anywhere. While they were out, the guys went to a local barbershop. However, they received no service and other customers were taken even though they came in after Chris and Dad had been waiting for a while. So, the guys left without getting haircuts. (Chris had been experimenting with letting his hair grow a little longer, but then decided that he didn't like the feel of the longer hair on his neck.)

Other than the above, the guys drove around the area a little more before eventually settling into their room again for a DVD movie night, using Chris' portable DVD player. Tonight they watched "Sky Captain."

Chris felt fine pretty much all day, but for a little pain in his left leg during the late afternoon. No medication was needed. He is due to return to the hospital tomorrow for the final post-vaccine check up required in Houston (the rest will take place in Tampa), as well as to see if he needs platelets or a "tummy tap" before they fly home on Friday night. Speaking of flying home, it sounds like there may be a small welcome home reception for them at the airport on Friday night. (If anybody else is in Tampa and might be interested in attending, just let Mom know so she can pass on the travel info.)

Joke of the Day -- (for Chris, in anticipation of his return home) -- Why did the boy study in the airplane? Because he wanted a higher education.

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, Artur, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, January 25, 2005 10:35 PM CST

Hi Everybuddy!

Chris didn't have to report into the hospital at all today. He started his day by singing in the shower before enjoying another "breakfast brownie." He later lost his breakfast, but it was good while it lasted.

Chris spent the bulk of his time in the "school" set up at the RMH. Dad had to fill out a bunch of papers to enroll Chris in the local school system. There were two teachers available, and today there were only four students there all day (rotating in and out of class is the norm for seriously ill children), one of which was Chris. He thought it was "boring," but he also seemed to be enjoying it as well. Chris mostly worked on math, but also did some phonics and a little bit of writing. The minimum educational requirement under these conditions is four hours per week. Having a full six hour day today, Chris tried halfheartedly to convince Mom and Dad that he didn't need to go back to school this week. Nice try . . . Other than that, Chris spent his time reading and especially playing his Zelda GameBoy game.

Once again, Chris was in good spirits throughout the day right until the very end of his later-than-usual phone call to Mom, when he started sounding a little sad about not being in Florida yet (he knows that airline tickets are in hand now though). In other medical news, Chris felt some pain in his right groin area, but no medication was needed. In addition, his girth has grown from 71.5 cm to 73.5 cm. We're not sure that he can make it through to next Thursday (his first scheduled "tummy tap" in Florida), so Dad will check in with the doctor about this.

Joke of the Day -- Why can you never swindle a snake? You can't pull its leg.

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, Artur, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, January 24, 2005 10:32 PM CST

Hi Everybuddy!

Chris didn't have to be back at Texas Childrens Hospital until about 10 a.m., so he had time to really enjoy the delicious "breakfast brownies." But once he got there, Chris' mediport was accessed so that blood could be drawn for certain blood tests. The blood test results were decent enough to not require any transfusions (platelets were at around 36). Blood was also drawn for Chris' participation in another clinical trial designed only to try to figure out why some children have such a difficult time in responding to treatment while others do not. Aside from that blood sample (which will be used for a genetic study), there will be no other action directly involving Chris for that trial. We do hope that some valuable information can be gathered.

Chris' sodium level was at 135, which is the low end of the normal range, and he will keep taking the salt pills. The potassium was low, so Chris will have to continue taking one of those big pills per day. Chris' abdomen did not grow much at all (his girth measured 71.5 cm around) and there is a possibility that he may not need a "tummy tap" this week if he is able to sustain this.

Other than that, Chris had a fairly quiet day, but he spent it in good spirits. He played the Zelda videogame for a long time. Later, he accompanied Dad to a local steakhouse, where Chris ate shrimp (whatever works).

At bedtime, Chris called Mom and read another chapter of the Hardy Boys book to Mom, before she started reading the 3rd chapter of the 6th "Series of Unfortunate Events" book (she couldn't finish it because it was getting late, but they'll finish it tomorrow).

Joke of the Day -- (Chris experience today) -- After having been enrolled in the New York City School District while in the hospital for so long up north (and hoping to return to his own school very soon), it was now time for Chris to enroll in the Houston School District so that he can have access to the teacher who comes to the RMH. The RMH setting is more like a regular school, with more formal hours of 8:30 - 2:30 and a lunch break. Chris will only attend that "school" for a couple of days, nonetheless, the importance was not lost on him. Upon hearing that he has to go to school at the RMH, Chris quipped that he should register as an exchange student.

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, Artur, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Sunday, January 23, 2005 9:50 PM CST

Hi Everybuddy!

Chris continued his 3 day hospital-free weekend with a fairly low-key day today. He woke up pretty early again (maybe his internal clock has not adjusted to the Central Time Zone) and enjoyed some delicious pancake cookies for breakfast. After watching "Quarterman" DVD and relaxing around the RMH for a while, the guys headed out for Target again, where Chris ate (you guessed it) pizza for lunch. The big activity for the day was watching a very funny (two thumbs up from both Chris and Dad) movie at the theater, "Are We There Yet?" Then they explored more of the Houston area by car before settling in for some KFC popcorn chicken for dinner.

Chris called Mom this evening a little earlier than usual, so there was time for him to read the next (2nd) chapter of the Hardy Boys book to Mom, before she read the 2nd chapter of the 6th "Series of Unfortunate Events" book (they had started on it a couple of nights ago). Once again, Chris did a wonderful job of reading aloud. He told Mom that he had a good time all weekend. He'll have to get back to some "business" tomorrow when he returns to the hospital for at least a blood test and evaluation, as well as do some more schoolwork. Chris specifically asked Mom to find out what schoolwork his classmates are working on right now so that he knows where he is relative to them.

Joke of the Day -- Doctor, doctor, I can't stop sneezing. Don't worry, that's much ah-choo about 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, Artur, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Saturday, January 22, 2005 10:42 PM CST

Hi Everybuddy!

Chris is continuing to enjoy his 3 day hospital-free weekend. After breakfast, he and Dad met up with some friends who moved to Texas while Chris was just a baby. That was a wonderful reunion, especially for Dad. All four of them headed out in the direction of the Space Museum at NASA's Johnson Space Center. On the way, they stopped for lunch at Burger King, at Chris' request. Once that was over, Chris really enjoyed the Space Museum, especially at the mock up of the Space Shuttle Columbia, which he
"landed" with a perfect score. Chris wound up with a cool t-shirt and hat that say, "Failure is Not an Option."

On the way back to Houston, Chris got a "hankering" for Red Lobster for dinner. There was such a restaurant, but it was accidentally passed along the highway. That gave everyone a chance to try a new and different restaurant further on up the road, which they enjoyed.

After returning to the RMH, the guys called home, where Mom and Cate were busy teasing Chris by trying to make him guess which one of us was on the phone with him; they kept handing the phone back and forth to each other for a few minutes. He thought it was funny. Cate told Chris about how she and Mom went to dinner, and while waiting for a table, Greg and his family showed up at the same restaurant (so they all enjoyed dinner together); they tried to call the guys in order to pass the phone around then so everyone could say hello, but the guys were obviously having too much fun doing other things at the time.

Chris asked to read a story to Mom, for a change. Chris read the entire 10 page first chapter of one of his new Hardy Boys books aloud to Mom. He truly did an outstanding job, having only stumbled on a couple of words throughout the entire reading. Mom really enjoyed that. Afterward, Chris and Dad were going to watch the "Princess Diaries 2" DVD as a "Guys Night in at the RMH" tonight. That's a fun way to end a fun day.

Once again, Chris was in a good mood all day and enjoyed his "day off."

Joke of the Day -- (thanks Uncle Tom) -- Is the nose the scenter of the face?

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, Artur, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Friday, January 21, 2005 10:28 PM CST

Hi Everybuddy!

Chris awoke early on his own, even though he had no particular place to be at any particular time. Chris worked on his homework while Dad worked on the laundry. They basically enjoyed a "goof off day."

They drove all over the place looking for a Burger King (apparently Chris' lunch choice of the day). Eventually they wound up at the Natural History Museum. Chris especially liked the section about Native American cultures. They also visited a bookstore that had two Hardy Boys books that Chris had not read before (he has most of that series already), so he was happy about finding that.

Later they drove south in the direction of the space center (no time to visit there today). The guys did find the local shopping area though. Dad was especially happy to have found a Walmart so that he could get the appropriate pegs to add to "Ronald's" (the stroller) wheel in order to allow Chris to more comfortably rest his legs, since he's grown since "Ronald" was acquired. Chris was also happy to have been able to spend about 2 hours in a Chuck E. Cheese, unwinding in a fun way. Another fun thing was getting a very nice phone call from his Tampa clinic nurses, who sang "Happy Birthday" to Chris and told him to hurry home.

Chris was in a good mood all day and enjoyed his "day off."

Joke of the Day -- (thanks Uncle Tom) -- Doctor, doctor, I get heartburn every time I eat birthday cake. "Next time, take off the candles."

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, Artur, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Thursday, January 20, 2005 11:19 PM CST

Hi Everybuddy!

Chris started his birthday early since he had been asked to report in at 7:30 this morning. So, he was able to eat a little bit of breakfast (about 1/4 of a bowl of cereal, while Mom sang Happy Birthday over the telephone) before heading over there. As it turned out, nothing happened until 8:30 a.m. (classic case of "hurry up and wait") Once things got going though, Chris got "hooked up" then blood was drawn and a urine sample was taken.

His birthday was not forgotten though. Yesterday, the child life therapists threw a birthday party for Chris. Today, the oncology department gave Chris another party, one complete with a large remote controlled airplane and 8 magic tricks. There was also a huge chocolate-chocolate birthday cake, around which the staff sang "Happy Birthday" to him. Chris "blew out" the pretend candles (real candles are not allowed in areas where oxygen is present, such as where Chris was today).

Afterwards, it was time to get back to business. The doctor reviewed the informed consent documentation with Dad and Chris. During this review, it was learned that Chris is only the 2nd patient to receive this particular version of the neuroblastoma vaccine (one of Chris' friends was the first, and he received it not too long ago). Because this is very early in the testing phase, Chris' dose is at the lowest level at which the vaccine will be tested. He is not eligible to come back for any other doses in the future. At one point, the doctor left the room, and Dad and Chris talked about whether or not to proceed. After a few minutes, both Dad and Chris (who is now old enough to give his approval or disapproval) signed the informed consent forms.

Then the vaccine (made from Chris' own blood sample that had been provided a few months ago) was thawed out and infused into Chris in two very small doses. A doctor was required to push the substance out of the syringes (there were 2) into Chris' mediport. It smelled like Chris' stem cells smelled during his transplants back in 2001: somewhat garlicky, due to the preservative used.

The guys were prepared to have to deal with antibody treatment-like pain (as discussed in the informed consent documentation), but Chris did not seem to have any adverse reaction to it at all. He was supposed to have stayed there for 4 hours so that medical support could be provided if necessary. Chris felt completely normal all day, so he was technically released after about 3 hours (and a few blood draws made in order to assist the research). Before they left though, Dad asked whether any of the blood specimen had been used to determine Chris' routine blood levels. The answer was no, so another vial of blood was drawn for that purpose (particularly important to check platelet and other levels since Chris has been given a 3 day reprieve from medical attention). After another 40 or so minutes, Dad learned that the platelets were up to 62 (thanks to the transfusion a couple of days ago). So, it appears that Chris really is "good to go" for a long weekend.

At some point during the waiting period, Chris received his 3rd birthday party. This one was sponsored by the surgical team. Chris received a huge canvas bag filled to the brim with premium All-Star baseball memorabilia. There was another birthday cake, more singing and more "blowing out" the imaginary candles.

All-in-all, Chris had an excellent birthday, especially considering that he's been away from home for so long. Aside from all of the above, Chris also talked to and was sung to by both sets of grandparents, and others. At his request, Chris enjoyed dinner at the Olive Garden, where he ate about 1 cup of spaghetti and some garlic bread. He had a headache then though. Chris doesn't usually get headaches, so maybe this was a symptom fro the vaccine. It has been duly noted for discussion with the doctor later.

Chris will be allowed to sleep in a little bit later tomorrow since he's got the day off from a medical perspective. He doesn't necessarily have the day off from schoolwork though. There is a teacher at the RMH, so Dad will make an appointment with her for Chris. After that though, the guys intend to do some leisure exploration over the weekend.

In other medical news, Dad learned that yesterday's CT scan results indicated that the neuroblastoma has spread in to numerous small tumors on Chris' liver and diaphragm. In addition, there are a couple of spots on his lung and some swelling around the lung, although those did not appear to be neuroblastoma (perhaps they are related to last week's pneumonia??). The scan only covered the abdomen, so we don't have a current status of what's going on in his legs. This news was not unexpected, considering how much time went by without systemic treatment against the disease. We can only hope that the Thalidomide, followed by the vaccine, will be able to do serious battle against the disease. The good news though is that Chris felt just fine and was happy all day today. He was tired by bedtime though.

Joke of the Day -- (thanks Uncle Tom) -- Did you like the dictionary I gave you for your birthday? Sure, it's a great present but I just can't find the words to thank you 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, Donald, Andrew, Artur, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Happy Anniversary to Aunt Jackie and Uncle Bobby, and Happy Birthday to Uncle Pete!

Love,

Chris, Alison and Pat

Wednesday, January 19, 2005 11:24 PM CST

Hi Everybuddy!

By the time this update is sent out, it will be after midnight. That means that Chris will have turned 11 years old. We are so very proud of that fact because we were not sure whether he would make it to his 6th birthday. Now he's 11!! So, Mom and Dad start this update with Happy Birthday wishes for Chris!

As for his last day as a 10 year old, Chris spent a very large portion of it at Texas Childrens Hospital. Dad let him sleep in a little bit later than usual because Chris had to be NPO (no food or drink allowed) in advance of his "tummy tap."

Chris and Dad proceeded to another of the four towers that make up this very large hospital in order to be seen by the surgeon who performed the procedure. He was also seen by the anesthesiologists. While in the waiting room, Chris learned how to play a new card game, with Dad's help. It took a while to learn, but they got it eventually. Chris also showed one of his tricks to a nurse, and he did a pretty good job at it. Unfortunately, one of the anesthesiologists knew something about magic and spoiled the fun a little bit by telling the nurse how it's done (geesh, he could have waited until Chris was asleep . . .). Chris wasn't too perturbed though. Speaking of anesthesia, this was the first time (that we know of) that Chris "went to sleep" with gas and no propofol. It seemed to work ok. The net result was that a little over 1 liter of fluid was drained from Chris' belly again today. His belly is not completely flat though, mainly because the tap can only drain fluid that has accumulated there; it can't draw fluid out of Chris' tissue.

Meanwhile, it seemed that the surgical team was not aware that Chris had other appointments. Just as soon as he could, Chris was released to go elsewhere in order to see about the CT scan and the x-ray. The CT scan required contrast, so Chris had to spend 1 1/2 hours drinking the contrast that had been mixed in apple juice. At some point during that phase, Chris was called for his chest x-ray. Eventually he also went in for the abdominal CT scan. Dad does not yet have results from either scan.

Finally, Chris was released to go get lunch at about 3 p.m. Given the time and Chris' hunger level, the guys headed over to the hospital's snack bar, where they found pizza (no surprises there, huh?) Chris liked it and declared it "pretty good for hospital food."

The guys then returned to the RMH and prepared to explore Houston a little bit further as they continued with shopping missions. Because this is the first time that Chris has been to this hospital, he has been handing out smiley face pins by the handfuls. He was down to only 2 left after having arrived there with at least 70 or 80. So, the first mission was to stock up on more smiley face pins. With Mom's help on a computer search, a shop was located that was only a few miles away and had about 60 more pins. So the guys set off to go get them. Chris had been feeling fine, but just as soon as he stepped out of the car and into the parking lot, up came lunch. Once again, he did not feel any nausea just before vomiting. Interestingly, his ear had been bothering as well. In any event, Chris was sorry that it happened, not necessarily because of how it made him feel, but rather because he liked that pizza and this matter interfered with his memory of the taste of the pizza. Kids!

Once the smiley face pins had been purchased, the guys returned to the Target store that they found yesterday. Dad was looking for pegs to add to "Ronald" the stroller to help Chris keep his feet up off the ground and out of the way of the front wheel (he has grown over the years). Chris also wound up with a couple of Batman DVDs, with which he is very happy so that he can watch them back-to-back tomorrow during his vaccine infusion. It's kind of a mini-birthday present; most of his stuff is here in Florida, where he intends to have a quiet celebration upon his return (hopefully at the end of next week). While he was at Target, Chris talked Dad into getting him another pizza and Slurpee. Particularly since Chris really needs to add weight now, Dad was all too happy to grant that wish.

Once again, Chris felt pretty good all day, was in a good mood, and seemed cheerful -- more like "the real Chris." Perhaps because he's older now, he really doesn't seem to mind too much the fact that he's not home for his birthday. He knows that his party is coming soon, so he's content to mark the day, but postpone the celebration by what we hope will be only a little over a week.

Joke of the Day -- (thanks Uncle Tom) -- I used to think I was indecisive, but now I'm not sure.

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, Artur, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, January 18, 2005 11:11 PM CST

Hi Everybuddy!

Chris started his day early, waking up on his own volition. He and Dad took off for the Texas Children's Hospital (which is the biggest childrens hospital in the country) for registration as a new patient and eventually to be seen there.

Once he made it into the oncology clinic, Chris reported to the infusion room, where his mediport was accessed and a blood sample was drawn just to see how his blood levels were doing. All in all, they're doing fairly well: white blood cells were at 4.0, the ANC was 1600, hemoglobin was 12.8 and platelets were at 28. Other blood test results revealed that Chris' bilirubin was finally down to the upper edge of the normal range: 1. Yahoo!! Also, his sodium level was a little low at 131.

The doctor saw Chris and agreed that his belly is pretty large again. So, Chris will undergo a "tummy tap" tomorrow. As a result, he will not be able to eat or drink anything tomorrow until after the procedure. While at the hospital tomorrow, Chris will also undergo a CT scan and a chest x-ray. So, it will be a busy day.

Today however, Chris spent part of his time checking out the nice large playroom, which includes Nintendo and PlayStation 2 machines. Interestingly, at one point, Chris played a PS2 video game against a blind kid. That went well for a little while, but eventually the blind boy preferred to play the game by knocking the different characters together in order to hear the different sounds and noises made whenever that happened. Chris, on the other hand, wanted to play in a more traditional manner so that he could collect more points (or whatever is supposed to be collected). Nonetheless, it was an interesting experience while it lasted. Chris also continued to refine his magical abilities (he brought to Texas the magic kit and DVD that he received for Christmas) by practicing one trick on several different medical staff members. Sometimes it worked almost flawlessly. Other times, Chris was being so careful to make sure that it would work that he "gave away" his secret before he could complete the trick. By the time he returns to Tampa though, Chris' delivery ought to be pretty smooth, so Mom is really looking forward to seeing it.

Dad got lunch for Chris and they had to wait another 1 1/2 before the platelets arrived for the transfusion. Although the platelet level was 28, the doctor wanted Chris to get a transfusion in advance of tomorrow's "tummy tap." Not long before the transfusion, Chris all of a sudden vomited. He did not feel nauseated beforehand, and enough time had passed to think that the salt tablets probably did not cause it. In any event, once that was over, Chris got on with his transfusion, and that was that.

As they left the clinic today, the guys walked out with one of Chris' new nurses. Upon their request, she pointed them in the direction of the closest Target store. So, they headed over there, where Chris thought he was in heaven. In the store was both a Pizza Hut and a place to get a cola-flavored Slurpee! He truly enjoyed dinner.

Medically, Chris felt pretty good all day, and was in a good mood. He talked to Mom a couple of times throughout the day, and to her, Chris sounded a lot like his old cheerful self. It was very good to hear his perky voice again, even if it was for short timeframes.

Joke of the Day -- (a "Chris original") -- Chris was inspired by the series of cows that are decorations around the hospital. Each cow is decorated in a unique way, such as one that is obviously a cow but is trying to disguise itself as a bison. Chris' joke arose from looking at a cow that was decorated in the Winnie the Pooh motif. "What do you call a cow that likes honey very very very much? Winnie the Moo."

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, Artur, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, January 17, 2005 10:37 PM CST

Hi Everybuddy!

Chris and Dad spent a large part of their day getting to know their new surroundings in Houston. They did that by obtaining a rental car for the week, which should make the rest of their stay more comfortable and convenient. The closest location for the rental car company was only a little more than a mile from the RMH. So, after Chris awoke, Dad piled him into "Ronald" the stroller, and the two of them headed out to pick up the car. En route, they stopped by the hospital in order to become familiar with where they had to be for tomorrow morning's appointment.

After obtaining the car, they drove around to become more familiar with Houston itself. They stopped at a few shops, but so far have not yet run into any malls (although they have found several shopping plazas). They found the closest Pizza Hut (carry out only, not a dine in restaurant), as well as an Outback Steakhouse and another restaurant chain that we haven't seen since we lived in Georgia back when Chris was a baby (they'll probably visit that one soon since we enjoyed it in Georgia several years ago).

Otherwise, Chris spent his time watching a "how to do magic" DVD on his portable DVD player. Also connected to that is his Playstation 2, so he can play video games easily too. Chris enjoyed speaking briefly to his friend, Greg. Neither he nor Dad can yet access the internet, so Mom is posting this from home (she arrived home safely this evening).

Medically, Chris felt reasonably well all day, although his belly is considerably bigger again. Another "tummy tap" is expected, at least based on the size of Chris' girth. Chris tried to eat better than he did yesterday, but the size of his belly and the discomfort it causes actually gets in the way.

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, Artur, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Monday, January 17, 2005 8:51 AM CST, Late posting for 01.16.2005

Hi Everybuddy!

We are safe but in different locations. Chris and Dad left for Houston yesterday morning by flying out of Norfolk's airport to Baltimore-Washington International Airport (BWI), and from there, heading on to Houston. It was a long, tiring travel day that started with both Chris and Dad having been selected for the full security searches. First the flight to BWI was delayed by about an hour, and when it did take off, the flight was a bumpy one. Fortunately the lay-over was long enough to accommodate that as well as some time for lunch. The flight to Houston was smooth sailing though and they arrived a little ahead of schedule.

Dad hailed a cab at the airport in order to go the roughly 5 miles to the Ronald McDonald House. The cab driver insisted that he knew where he was going. He did not, so it took longer than it should have in order to get there.

Once at the RMH, the guys were surprised to find a very nice looking but unusually set up facility. For example, unlike the other RMHs at which we have stayed, there are no restaurants within eyeview of the place. In addition, the RMH's pantry does not contain anything but for things like flour and cake mix. (The other RMHs have at least basic staples like cold cereals, basic canned goods, etc. with which to make a quick meal, or they are located within easy walking distance of a grocery store.) Dad was able to piece together a grape jelly sandwich for Chris to eat for dinner last night. In addition, there are unusual things like "TV rooms," for which you must surrender your room key in order to access. That way, individual families can have a "tv room" for however long they want to hand over their room keys. At first blush, that doesn't seem conducive either to the relaxation for the individual family (that will depend on whether there are other families waiting for access to a "tv room") nor does it seem to help families get to know each other. They could not easily access the internet either, so we are anticipating that Mom will have to send out reports from home (this one is being sent from Savannah, Georgia, which is how far she got last night in her journey home). It did not help to have the guys assigned to a room in which the heat does not work (if it is like most RMHs, the volunteers only work until about 9 p.m., and since they arrived there after 8 p.m., there wouldn't have been anybody to talk to about it until this morning).

Medically, Chris did as well as could be expected under the circumstances. He wore a surgical mask in the airports and the planes. Before leaving, he enjoyed a pancake at Grandma and Grandpa's house. At BWI, he ordered what turned out to be a mediocre pizza. That in turn, wound up being his best meal of the day since dinner turned out to be a jelly sandwich (had they known what to expect, they would have eaten dinner at the airport in Houston). Chris did not urinate very much yesterday, so we hope that he will be able to get back on track today.

So, in short, the guys were not happy as they settled into their first visit to Houston. They may wind up renting a car as there does not appear to be any source of food or other conveniences located within walking distance. Hopefully today they will be able to get their bearings in order to adjust to the new location a little better.

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, Artur, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night, Genie!

Love,

Chris, Alison and Pat

Saturday, January 15, 2005 11:12 PM CST

Hi Everybuddy!

We are happy to report that Chris was stable enough to have allowed us to depart New York City. We have arrived at grandparents' house in Norfolk, Va. Last night was a pleasure with no beeps, interrupts, and everything else that happens in a hospital at night which prevent patients from resting. We all slept (relatively)soundly. Chris even managed to get up and go to the bathroom in the middle of the night without waking anyone. As there was baggage scattered all over the place due to having to repack everything, that was quite an accomplishment.

We all woke up pretty early as there was still a lot to do; Dad wanted us to leave the Ronald McDonald House no later than 1:00 p.m. in order to keep us on track for tonight and tomorrow. Chris woke up on his own at about 7:30 a.m. He said that he woke up twice last night because he was enjoying a very nice dream about Pizza Hut pizza. Each time he awoke, he was disappointed to find out that they were only dreams. Mom told him that those were dreams that could be fulfilled later today.

After breakfast (Chris ate well), things moved along well with the repacking, picking up the rental car, and with the final cleaning of the room. Mom got a great little van. Everything fit in it perfectly and Chris was happy to learn that it had a built in DVD player. We had a very worthwhile momentary delay as one of our New York friends brought over her dog for Chris to visit with before he left, and she also took pictures. It was worth the wait!

Perhaps because this is a holiday weekend (we lose track of such things when hanging around the hospital), traffic was the best we've ever seen in New York; it flowed well everywhere. Due to our timing in leaving Manhattan, we stopped on Staten Island so Chris could have his dreamed-of Pizza Hut pizza for lunch followed by a Slurpee for the road. The two slices that he ate there (plus some cheese off of a third slice) was the best that he's eaten in a while. But for one stop somewhere on the Delmarva Peninsula for a light dinner, the whole trip was pleasant with virtually nonexistent traffic. Chris either played his GameBoy DS or watched a DVD (Shaulin Soccer). He didn't have any problems but for getting in and out of the van and climbing one flight of stairs at Grandma and Grandpa's home; his legs are very weak.

We arrived in Norfolk just before midnight, so we pretty much just said hi and good night to Grandma, Grandpa, and their disappointed dog Casey, who wanted to play. Mom got a very tired Chris right to sleep.

We're still not sure how each of us is getting to wherever it is that we are each going tomorrow, but by tomorrow night, Chris will be in Houston Texas waiting to report into the Texas Children's Hospital for neuroblastoma vaccine treatment. He will be one of the first kids in this clinical trial.

Medically, Chris had a pretty good day other than his legs giving out on him on occasion. He got an upset stomach after eating two and half pieces of pizza. That was not a comment on the quality of the pizza so much as it was him having eaten so much after not having had much to eat for quite a while. Chris' legs might be weak from muscle atrophy (after being cooped up in room for a week, added to 2 1/2 months of in and out of the hospital), or it could be from the cancer that we know is residing in both of his legs, or both. As far as we're concerned, we're treating Chris as if this is a muscle weakness issue and encouraging him to walk a little further and move his legs around more and more each day.

Joke of the day -- (Thanks Barbara) -- Knock, Knock. Who's there?
(you had to be there).

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, Artur, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night, Genie!

Love,

Chris, Alison and Pat

Friday, January 14, 2005 9:51 PM CST

Hi Everybuddy!

We are finally all sleeping in one place again tonight -- the Ronald McDonald House. In a move that almost bordered on a surprise, Chris was indeed released from the hospital today. He had a restful night last night; each time Chris' blood oxygen saturation was tested, it was 99%. That was the first piece that had to fall in place before discharge could be considered. The next piece was that Chris had to get a red blood transfusion. That occurred during through the wee hours of the morning with Dad keeping an eye on the process. Chris had no fever nor hives. Another big hurdle was getting the early morning x-ray out of the way. Thankfully, this too looked quite good. The last piece to fall into place was for Chris to receive a platelet transfusion before the anticipated trip to Texas. The doctors both here and in Texas wanted Chris on the airplane on Sunday with a platelet level registering no less than 50. So, Chris "tanked up" on a rather big dose of platelets. Not long afterwards, the entourage of oncologists came to his room to bid Chris adieu. Chris' weight is creeping upward, but his waistline actually "shrunk" a half a centimeter. All of this actually occurred before noon, too.

To help facilitate getting everything done, Dad got things going early in the room today. The original plan had Chris going for his x-ray at 8:00 a.m. So, Dad and Chris got going early and were ready for action at 8:00 a.m. Unfortunately, the patient escort people weren't so timely, so Chris sat for a bit in his hospital gown and his light but warm isolation overgown (complete with mask and latex gloves). Once the escort showed up, things fell into place. Chris X-ray looked peculiar to Dad since it seemed that there were two dark spots at the base of his left lung. Obviously, Dad is not a radiologist, but these spots looked ominous to him. They turned out to be air pockets of some sort in his abdomen (or something of the like) and his lungs looked much better. The x-ray also reflected something that the nurse practitioner said was possibly evidence some sort of viral activity earlier in the week. The guys got back to the room just as breakfast arrived (Dad had ordered it earlier).

Soon after Chris finished breakfast, Chris teacher arrived; the two of them worked on science. At one point, they did some role playing. Chris became the teacher and the teacher became the student. She intentionally made some mistakes that Chris corrected. It was a good class. As any good teacher would do under the circumstances, she gave Chris ten days worth of homework to cover his stay in Texas. We really appreciate all of her efforts throughout Chris' lengthy stay this time.

Soon after her departure, Chris began his platelet transfusion. It went quite well. Towards the end of that, the doctors came by during rounds and announced to Chris that he was cleared to leave. Needless to say, we started packing right away.

Chris had a number of visitors today. Unlike his usual self, he acted somewhat detached when some of them came to call. One lady has been a source of comfort to him for several years, but Chris just didn't interact with her very well at all. Dad's not sure why but maybe it was due to being tired, drugged, and just exasperated by this period in the hospital. He was like that for most of the morning, too. He was hit and miss with many of the people to whom we bid good-bye.

Once free from the hospital, we headed back for the Ronald McDonald House, where Mom and Dad basically had to repack everything for the trip. Circumstances have changed since the last time we packed. The plan now is for Chris and Dad to fly to Houston, while
Mom will drive either to Texas or to Florida. We'll make that decision based on how well Chris is able to travel to the first stop: Norfolk, Virginia. If Chris can remain stable and ideally improve as he hopefully eats better and enjoys a change of pace and environment from the City, then Mom may return to Florida. If it appears that he may destabilize, then Mom may proceed to Texas. Only time will tell.

While Mom and Dad made quite a mess of our room as we reorganized things for packing, Chris enjoyed a nice two hour nap, just as he's done almost every day this week. When awakened, he was in a pleasant mood and helped by sorting which toys and gadgets he wanted to take to Texas and which could go to Florida. We all were treated to a reprieve when Uncle Brian came by for a visit. Chris was a little more sociable during that visit, but he is still not back to being the fun-loving "Chris." He just seems so exhausted, but then again, he's really been through a lot recently. After hanging out for a bit, we all traveled to the Outback Steakhouse for dinner. Chris ate relatively well (considering the way he's been eating recently) with his favorite macaroni and cheese dinner, but his appetite is still "off." Soon after Uncle Brian's departure, Chris took his first shower in a week. He was happy to be free of bandages, adhesive tape, tubes, and pumps.

Medically, Chris had a pretty good day other than being tired and somewhat indifferent. His weight is up a bit and his waist down a bit. If a stranger were to look at him though, Chris would appear to be pretty thin (in certain positions, his ribs show, and his shoulders are bony). His legs in particular are weak since he hasn't been able to move around much at all. Although Chris no longer appears to be yellow (there is still a trace of it in his eyes), he is pale and kind of sickly looking. Nonetheless, we believe that he will improve as he moves on to new experiences and back to more familiar foods. Chris is still a little short of breath (but not necessarily as much as earlier this week). He doesn't cough very much, but when he does, it sounds "wetter" than it did in the past. He was fully tanked up for this weekend's anticipated trip to Texas.

Joke of the day -- (from Uncle Tom) -- What do you get when you cross an Indian with a cow? ... Geronimoo.

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, Artur, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night, Genie!

Love,

Chris, Alison and Pat

Thursday, January 13, 2005 8:19 PM CST

Hi Everybuddy!

Chris spent another relatively quiet day in-patient, but this time he did it without the benefit of oxygen assistance. He has handled it fairly well too since his blood oxygen saturation averaged about 96%. The blood test results were as follows: white blood cells dropped a bit to 2.0 (normal: 4 - 11), red blood cells fell to 2.37 (normal: 4.2 - 5.6), hemoglobin dropped to 8.2 (normal: 13 - 17), and platelets were at 24 (normal: 160 - 400). We are expecting Chris to receive a red blood cell transfusion tonight and perhaps a platelet transfusion tomorrow. In addition, Chris' sodium rose a little from 128 to 131 (normal: 136 - 144), and potassium was 4.8 (normal: 3.5 - 5.1). AST (one of the liver function markers) was 40 (normal: 10 - 37).

Chris got a nice night's rest although the initial plan called for him getting more Lasix due to low sodium. Dad talked them out of doing that so that Chris (who was acting perfectly normal) could get a good night's rest. We really appreciate being able to dialogue with the medical staff.

Nothing has "cultured" with respect to Chris' pneumonia. In spite of checking for all of the usual pneumonia suspects, along with the more unusual ones like SARS and Legionnaire's Disease, we still have no idea what caused it. Perhaps it was a virus. More importantly though are the facts that Chris' lungs are sounding a little better to his medical team who have been checking up on him and that he has been able to remain comfortable without oxygen support.

In fact, there is talk that, as long as he remains stable, Chris may be discharged tomorrow. First he has to get through the night without any significant issues, get an early morning x-ray and get "tanked up" on his transfusion(s). So, we are beginning to make some preliminary travel plans again, but not locking anything in until we see what develops tomorrow.

As for today, Chris participated in class with his teacher, who together worked on more science. They were integrating the Internet using Chris' laptop to check-in on "Deep Impact," NASA's effort to arrange an impact with a comet. Other than that, Chris spent his time eating, taking medicine, breathing in and out of his incentive spirometer, going to the bathroom thanks to another dose of Lasix, taking a 2 1/2 hour nap, completing his homework, working on the computer, and sitting up in a chair playing his new video game.

Joke of the day -- (from Uncle Tom) -- What do you get when you cross a rabbit with a kilt? ... Hopscotch.

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, Genie!

Love,

Chris, Alison and Pat

Wednesday, January 12, 2005 10:33 PM CST

Hi Everybuddy!

Chris slept periodically throughout the day in an attempt to make up for lost sleep that he and Dad missed last night. Once Mom left last night (she got to the RMH at about 2 a.m.), Chris received a mega-dose of Lasix, which encouraged him to urinate throughout the remainder of the "wee hours" (ok, maybe that pun was intended). Immediately on the heels of that, Chris received a dose of Albuterol through a nebulizer in order to help his lungs expand. That kept the two guys up a bit longer. They finally went to "sleep" at about 5:30 a.m., only to be awakened the early morning shift change and the doctors' rounds entourage. Soon after they all departed, Chris' teacher arrived.

His teacher noticed that Chris was tired, but she managed to rally him for his class period, which covered social studies and science. He likes both classes and she keeps him involved (in some manner or fashion), so they had a good class in spite of the adverse circumstances. Hospital teachers require the development of certain instincts concerning when to push, when to back-off, and when to just sit there and read to the student. Chris has been lucky in that all of his hospital teachers over the years have had those instincts.

Chris took a couple of naps throughout the day, and was able to get some fairly deep sleep for amount of undisturbed time that he had. In addition, he spent a couple of hours sitting up at the computer that we've moved back into the room. Now that he's a "big guy," Chris wanted to help Mom is order his birthday gift: a new laptop that should make it easier for Chris to do the video game playing - and to some extent, designing - that he likes so much. His old one was fine for its time period, but cannot keep up with the video graphics. The new one will be able to allow Chris to play all of the newer computer games, yet it also has the "office-like" tools needed to do school work, too. (In Florida, some of the high school classes can be taken online so the new computer should have a lot of future ahead of it.) Although he was excited about it, Chris was so exhausted that he fell asleep before the order could be completed. Mom finished it up for him though, so that should be something else nice to which to look forward when he is able to return home. Because it appears that being on the road will likely be an integral aspect of Chris' future treatments, Dad will carry it along with the "family laptop" while making the medical travels.

As a reminder of Chris' formidable strength (and of course the surgeon's skill), Mom learned from one of the nurses today that many patients who undergo a bronchoscopy are in significant discomfort and pain for a day or two afterwards. That's why the Pediatric Observation Unit (POU) was notified last night to be prepared to accept Chris after the procedure, if needed. Chris didn't need it. It hurts for him to cough, but it's not the same sort of pain level that many other people experience. And, normal breathing is comfortable for him, even though it is still rather shallow (his voice is weak and like he's a little out of breath). The nurse said that Chris' ability to come through that procedure as well as he did was remarkable in and of itself.

In fact, Chris' biggest issue today was his grogginess from having "pulled [pretty close to] an all-nighter." He coughed a few times, and was sore as a result. He also had what appeared to be occasional muscle spasms in his calf, and just before his after lunch nap, Chris was very upset about the "dancing feet" sensation (as he was trying to fall asleep, his feet felt like they were running even though they were still). That drives him crazy whenever it happens (thankfully, not so often). Although it was reported today, he did not receive anything for it since once he was asleep, the issue disappeared and stayed away even after he awoke again.

Chris had to deal with another (albeit somewhat smaller dose) of Lasix during the afternoon, so he had another opportunity to discharge more fluids. We've asked the doctors (again) to consider administering it on a regular schedule in hope that it may reduce the requirement for "tummy taps" and possible reduce the possibility of the abdominal fluid encroaching into the lungs or elsewhere. It was "taken under advisement."

When asked, the surgeon stated that he did not believe that Chris' current problem is abdominal fluid that has seeped into his lungs because the x-rays do not indicate anything of the sort. He believes it's an infection, even though we do not know the origin. So far, nothing has "cultured" in the fluid extracted during last night's bronchoscopy, including the PCP (the pneumonia type that tends to originate from fungal infections). That's both a good thing and a bad thing. It's good in that we don't really want Chris to have PCP or any other nasty bug. But it's bad in that we still don't know what's causing the pneumonia. We can't treat in a targeted manner what we do not know to exist. As a result, Chris remains on a few broad spectrum antibiotics in order to cover as many bases as possible. (If this is viral in origin, we may never know what caused it.) Chris' case is now being looked at by a couple of infection control physicians, both of whom want Chris to remain in his room (and for us to remain in gowns and masks while with Chris) until he is either well or they can figure out what it is so that the risk is minimized to the other patients.

We got some clarification Texas about Chris taking Thalidomide. The attending doctors last night withheld it because they hadn't been briefed on Chris' need for it, especially post-bronchoscopy. When one of the actual oncologists made rounds this morning, she issued clear guidance concerning Chris' continued use of the drug. So as we understand it, within the first twenty-four hours of the bronchoscopy, pathology should know whether Chris' pneumonia is caused by either bacteria or a fungus (fungal infections are tougher to treat). There is also a five day countdown to see if the infection might be viral in origin. The Thalidomide is to continue as long as Chris can tolerate it clinically, until he is about 3 days away from beginning the vaccine trial in Houston.

In addition to sleeping, Chris spent some time doing his homework, watching a couple of movies ("Dumb and Dumberer" and part of a Jackie Chan movie), and playing a new video game that he asked Dad to get with his allowance money. (The doctors are convinced that Chris is going to medical school since it seems that anytime any of them come in to examine him, Chris happens to be doing homework. He actually doesn't do homework continuously, we assure you, but he does try to keep up.) Oh, he also worked a little bit on making another beaded keychain; this one is a smiley face, which we'll hang on his hospital door once completed. He also spoke very briefly with Greg, but he couldn't hardly keep his eyes open during the conversation. We know that both boys are disappointed about the setbacks, but we really are trying to get Chris home (by way of Houston) as soon as possible.

Medically, Chris had a pretty good and restful day, at least once he got past the very early morning hours. He looked like he has seen a ghost though, in terms of being so pale with dark rings under his eyes (mostly due to having stayed up so late) and rather gaunt. He received one small dose of pain medicine at the recommendation of the attending oncologist for his coughing. It doesn't happen very often, but at least now when it occurs, it sounds "wetter," like some of the fluid is beginning to move a bit. Chris' blood oxygen saturation count remained in the low nineties, so he is still getting "blow by" oxygen support. He occasionally asks to use a mask when he gets into one of his "coughing fits." He's been doing his breathing exercise with his "breathing machine." At bedtime, Mom had Chris do a few stretching exercises to loosen up his stiff shoulder muscles; that in turn got some his "gunk" loosened up a bit too. Throughout the day, those who listened to Chris' chest today mentioned that his right lung sounds clearer today.

Joke of the day -- (from Amy, Tampa Clinic) -- What do you get if you cross a bee with chopped meat? A HUMburger.

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, Genie!

Love,

Chris, Alison and Pat

Wednesday, January 12, 2005 0:13 AM CST , late posting for 01.11.2005

Hi Everybuddy!

This has been a very long day at the hospital. Chris had to be awakened at around 10:15 a.m. in order to meet with his teacher, who had arrived for class. He was groggy, but he fought his way through it and pretty much was fine. Meanwhile, Mom had learned that Chris was due for another x-ray to see what's going on in his lungs. At the end of his lessons, and moments before the patient escort arrived to take Chris for his x-ray, the surgeon arrived. This time he wanted Mom and Dad to see the computerized versions of Chris' most recent x-rays, visible on the computer screen just outside Chris' door. He pointed out Chris' worsening lung condition: an enlarging grainy area on the left lung that was now appearing on the right lung, despite several days of antibiotics to fight pneumonia. (Later, today's x-ray confirmed the worsening condition.)

Because the lungs are not responding to traditional pneumonia treatment, the surgeon wanted to perform a bronchoscopy on an "urgent" status in the operating room (not the special procedures room). The idea was to put a tube down into Chris' lungs, squirt some fluid into the lungs, then draw it back out and see what comes with it. Afterwards, that fluid would be "cultured" in the lab, where the pathologists will try to determine what is growing in Chris' lungs. The surgeon's best guess at this point is that it could be pneumocystis ("PCP" for short; it has a long formal name). That's another form of pneumonia that could be caused by a fungus and tends to come up in patients who have had a lot of chemotherapy. If he's right, then Chris' treatment will have to change. But he doesn't want to change the treatment unless he knows what's in there.

So, Chris was placed on the surgical schedule as an "add on." Having anticipated a possible "tummy tap," Dad had asked for at least 1 1/2 hours prior to Chris awakening whether Chris was going to be allowed to eat. When given the answer, "yes," Dad allowed Chris to eat a pancake and some bacon (a pretty good breakfast for this guy lately). After breakfast, Chris fell back asleep, probably due to the effects of Thalidomide. In any event, once the surgeon added Chris to the OR schedule, then he couldn't eat or drink anything until after the procedure (he did take Tylenol and Benedryl pills with a tiny sip of water just before his 1:30 p.m. platelet transfusion). Because he was an "add on," we had no idea when he would be called to OR. Chris was not called to the OR until 8 p.m.

Chris quietly waited throughout the afternoon in his room. He had one coughing spell at around 5 p.m., but otherwise remained relatively quiet. He could breathe ok with "blow by" oxygen support (meaning the tube is propped up to blow the oxygen across his face, but it was not attached with a face mask). Chris' breathing has been shallow since he's been hospitalized this time, but generally he is not too uncomfortable. The surgeon's concern was to get on top of whatever is going on in Chris' lungs before Chris winds up in respiratory distress and becomes uncomfortable. That's why the procedure needed to be done today.

The time passed fairly easily due to a number of distractions: a hour-long nap, watching a couple of movies ("Space Jam" and "I-Robot"), doing some homework, painting about half of the wooden car that he made for his research project on Indiana, talking briefly with our friend Cate, waving to the clowns through the glass of his door, and making two more beaded keychains (a dog and a dragonfly).

Chris was in the OR for about 1 hour and 15 minutes. The bronchoscopy went well, as did the "tummy tap," which was done while Chris was knocked out anyway. About 1.7 liters of fluid was drained from his belly again. As he was awakening from the anesthesia, Chris was coughing (a tube had been placed down his throat, then removed during the procedure, and besides, the surgeon wants Chris cough in order to help clear this stuff out of his lungs) and was upset about it. He was resisting the nurse who was trying to put an oxygen mask on him and insisting that he wanted the procedure to be done right away because it hadn't happened yet. Dad pointed to his watch and told him how much time had passed, and also gave Chris a choice of which oxygen mask to wear. Although still coughing, Chris began to settle down; more time was needed though for Chris to completely awaken and calm himself down to his natural state.

Chris only returned to his room at around 1:15 a.m. which seemed to have been more a function of getting a patient escort to bring him back up to the pediatric floor and out of the post-surgical care unit. He's alert (thanks to Dad telling him stories), had been through the post-procedure x-ray and waiting to come back to his room. We won't know the results of this procedure until after the lab can process the lung fluid to see what kind of germs might be in it.

This is expected to be an even longer night since there are orders for Chris to receive albumin then Lasix, both of which were supposed to follow what Chris calls the "lung tap" and "tummy tap" procedures. A few hours of frequent urination will follow the Lasix. So, once again, it appears that there will be little rest in the hospital.

We don't have the written reports, but we know that Chris' platelet level held steady at 20 (a transfusion was given today primarily due to the procedures), and his bilirubin fell some more to 4.1. Because he was not allowed to eat or take his oral medicines, we expect to see some disruption in his electrolytes (e.g., sodium and potassium), but we'll see what happens. At least he didn't have any more fevers today.

Joke of the day -- (thanks Uncle Tom) -- Did you hear about the farmer who got into a wreck with his tractor? He plowed right into the car.

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, Genie!

Love,

Chris, Alison and Pat

Monday, January 10, 2005 10:26 PM CST

Hi Everybuddy!

Chris did more coughing today, and had an oxygen tube at his bed, although he was not required to wear a mask with it (the tube just had to be pointing in the general direction of his face). He had a tougher day, but it seemed like a large part of that was due to circumstances beyond his control.

For example, last night, Chris received another dose of Lasix, which caused frequent urination over a couple of hours. Because that was done at night, it disrupted his sleep. That in turn, disrupted his day since he was groggier than usual. In addition, Chris had been receiving Fentenyl as needed for pain related matters (he only had about 3 doses over the past couple of days). However, it was discontinued today since it appeared to be causing him to become confused and disoriented. This was apparent when Mom returned to Chris' room after lunch (he had asked her to go get a new craft project for him to work on). She found him with his shirt off, laying diagonally across his bed. When asked, Chris had no explanation as to why he had done that, nor did even seem to have realized that he did it. When asked to put his shirt back on, Chris looked a little dazed, but said "ok" and slowly complied. The nurse came in the room about that time and realized that something wasn't right. After being examined by the nurse practitioner and consultation with a doctor, it was determined that the Fentenyl was probably responsible for that. Chris was getting sleepy anyway due to not having received enough at night, so he took a nap for about 1 1/2 hours. He was in better shape when he awoke, and was able to work on his homework. After that, he spent his evening watching a couple of movies: "Anastasia" and "Tarzan," eating dinner and taking medicine.

Chris coughed more, but he did not constantly cough. As long as he can catch his breath, we'd like for him to do a little more coughing in order to break up the "gunk" in his lungs. There was not a whole lot of medical news today. Oxygen was ordered during the night because his blood oxygen saturation had dropped to the upper 80s percentage. Throughout the day though, the percentage was generally around 94. Chris continued to grudgingly do his breathing exercises. The karate instructor volunteer must have known about the pneumonia diagnosis though. After giving her usual class in the outpatient clinic, she came by for a "private lesson" in Chris' room just before lunch (and right after Fr. Steve's visit). She had Chris focus on his breathing rhythm first. Then, when she asked Chris to do bedside punches and blocks, she specifically asked him to do the martial arts "yell," again to make him breathe better. At the end of her session, she had Chris meditate on his breathing before she left. The difference with her though is that she can have Chris do the right things medically but present it from a martial arts perspective. It's a nice trick.

Chris' blood test results were: white blood cells rose to 2.2 (normal: 4 - 11), red blood cells rose to 2.6 (normal: 4.2 - 5.6), hemoglobin jumped to 9.5 (normal: 13 - 17), and platelets dropped to 20 (normal: 160 - 400). We are expecting Chris to receive a platelet transfusion tomorrow. When asked, the doctor said that it is not uncommon to not have an immune reaction to pneumonia, particularly if it was viral in origin. Speaking of the origin, we have been told that nothing has "cultured" in the lab. However, we are still supposed to wear the gowns and masks in Chris' room.

Not all blood tests were repeated today. We do know that Chris' sodium held relatively steady at 129 (normal: 136 - 144), and that his potassium fell to 2.8 (normal: 3.5 - 5.1). Chris had to begin taking potassium pills again in order to help make up that shortfall. His ammonia level was good at 40 (normal: 0 - 50).

Joke of the day -- (thanks Uncle Tom) -- What is the laziest mountain in the world? Mount Ever- rest.

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, Genie!

Love,

Chris, Alison and Pat

Sunday, January 9, 2005 11:29 PM CST

Hi Everybuddy!

Chris felt a little better today, even though the doctor came by after today's x-ray to say that the pneumonia looked worse on the film. She said that it is not uncommon for pneumonia to look worse on x-rays while it is in the process of resolving when the patient appears to be feeling better.

Chris was quietly alert throughout most of the day, although he slumped over in an immediate nap right after lunch, which lasted about an hour. Other than that nap, he spent his time finishing up his purple lizard keychain (he did a very good job on it; all stitches are even and it came out looking just like the picture of it that he used as a sample by which to make it), working on homework, briefly playing a videogame and watching television (mostly movies, like the third "Back to the Future" film as well as "The Mummy"). Because he had received Lasix, Chris also spent a fair amount of time having to urinate. He did not seem to have a fever during the day (it came close, but not quite there), although he had one throughout last night. He also felt some achiness and pinpoint pain so he received a couple of very low doses of Phentinyl for it, but generally he seemed to be in somewhat better condition today than yesterday (and certainly better than the previous couple of days).

Chris' breathing remained in pretty good shape throughout the day (no need for oxygen). However, considering that he's only quietly resting, there was no strenuous activity to require strenuous breathing. His blood oxygen saturation continued to average between 93 or 94%, so there was redoubled emphasis on Chris doing his breathing exercises in the little device given to people after surgery to help them take deeper breaths. Chris does it grudgingly, but he really hates to do it because it makes him cough harder. Of course, that's what it is supposed to do as it helps fully inflate the lungs and break up that internal congestion. Later, Chris quietly apologized to his nurse as he admitted that he did feel a little better after those breathing exercises. Again, he can cough a little, but nothing comes up.

In terms of blood test results, the bilirubin dropped again to 5.0, the AST fell into the normal range at 36 (normal: 10 - 37) and the ALT held steady at 21 (normal: 5 - 37). This is the first time that either Mom or Dad could ever remember both the AST and the ALT both being in the normal range together.

His albumin level remained below normal (3.3 (normal: 4.0 - 5.2). Chris' sodium levels fell a little more from 129 to 127 (normal: 136 - 144), but before increasing the number of salt pills that Chris has to take or further restricting the amount of liquid he is allowed to drink, the doctor decided to reduce the amount of fluid going into Chris through his IV pump. Hopefully that will be good enough to solve the low sodium issue.

The routine blood test results were as follows: white blood cells fell to 1.8 (normal: 4 - 11), red blood cells rose slightly to 2.42 (normal: 4.2 - 5.6), hemoglobin held steady at 8.4 (normal: 13 - 17), and platelets dropped to 30 (normal: 160 - 400). We find it interesting that Chris' white blood cell count did not strengthen, even though he is fighting pneumonia.

Joke of the day -- (thanks Uncle Tom) -- Sometimes when I'm bored, I'll make spaghetti just to pasta time away. Now that's using my noodle.

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, Genie!

Love,

Chris, Alison and Pat

Saturday, January 8, 2005 9:57 PM CST

Hi Everybuddy!

Chris had a better day today, although he's still not quite ready to go anywhere yet. He was awake throughout the day. Sometimes, he was very alert and even on the chatty side. Then it seemed that within minutes, Chris would just melt back into the bed and simply watch television (there were a couple of good movies that he enjoyed, like the first and second "Back to the Future" films). Periodically throughout the day, Chris complained of achiness and especially those needle-like sensations that people sometimes feel when they have the flu. He took some Tylenol once this afternoon just for those symptoms, but the doctor later switched him over to Phentenyl. That's because Tylenol is hard on the liver and because it can mask any fevers that Chris may have. His last known fever was last night, but as noted, the Tylenol may have prevented anyone from knowing whether he was still feverish. He certainly acted like it on occasion, but it did not register. Chris also had moments of irritability, but for the most part he was fairly quiet today.

Chris' breathing seems to be pretty good, although he's still not taking in enough oxygen for the medical staff to be happy. His blood oxygen saturation has been averaging between 93 or 94%, but perhaps because he does not appear to be in any distress, he has not yet received any oxygen. In fact, Chris does not have a runny nose or any similar symptom. It's more the opposite: there seems to be thick congestion. He can cough a little, but nothing comes up.

We'd have to say that Chris was in somewhat better shape today, particularly with respect to his liver functions. The bilirubin was down to 5.5 (which brings him to within the actual parameters of the vaccine study requirements and not dependent upon special FDA approval), while his AST was 40 (normal: 10 - 37) and his ALT was 21 (normal: 5 - 37). Going hand-in-hand with these ever improving numbers is the fact that Chris' coloring is much, much better. In fact, there is only a little yellow visible in his eyes right now.

His albumin level is still below normal (3.4 (normal: 4.0 - 5.2); albumin is the substance responsible for pulling bodily fluids into blood vessels and other places where it is normally supposed to be. So, as we've seen for the past couple of months, it makes sense for Chris' belly to swell when the albumin is low. His belly grew by a couple of centimeters overnight (nearly an inch). Chris' sodium levels are low, too [129 (normal: 136 - 144)], but there were no additional salt tablets to take. He remains on a low fluid diet. The blood ammonia level was good at 39 (normal: 0 - 50).

As for the routine blood test results, they were as follows: white blood cells were at 2.0 (normal: 4 - 11), red blood cells were at 2.38 (normal: 4.2 - 5.6), hemoglobin was down to 8.4 (normal: 13 - 17), and platelets were at 55 (normal: 160 - 400).

For a few minutes at a time, but several times, Chris enjoyed stringing some beads together as he worked on one of those animal-shaped beaded keychain projects. (His will be a purple lizard when it's completed. Unlike the first time he tried to work on this kind of a project when he was about 6 or so years old, Chris is now able to put the beads on and pull the string through evenly so that he has straight lines.) He would do a line of 3 or 4 beads, then set the project aside because it required too much concentration. After relaxing for a while, he'd pick it up again and string a few more beads. He's almost halfway finished with it.

Joke of the day -- (thanks Uncle Tom, and dedicated to all of our friends back home) -- What safety features do the medicine bottles have in Florida? Tampa-proof caps.

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, Genie!

Love,

Chris, Alison and Pat

Friday, January 7, 2005 11:45 PM CST

Hi Everybuddy!

The inertia mentioned in last night's update seems to have tightened its grip on Chris a little more. He was admitted inpatient (again) at Memorial Sloan-Kettering Cancer Center due to a somewhat worsened case of pneumonia.

Chris awoke this morning feeling pretty cruddy and with a fever of 39.19 C (102.5 F). To make matters, he was understandably thirsty as a result of his fever, but he was not allowed to have but a sip of water because he was scheduled for another "tummy tap," which requires anesthesia. That sip of water was authorized only because it was needed to wash down the medication Chris had to take this morning. He was not happy. He even drew a picture (because talking took too much energy) of his body, with his throat and lungs highlighted as being the pain spots, as indicated by the large "frown face" right next to it. He also whispered to Mom that his throat and lungs felt "thick" and that he really wanted some cold water.

Dad took Chris over to the clinic as soon as he could (Mom stayed behind for a few hours to work on coordination for the upcoming transfer to Houston, Texas.) without the benefit of Tylenol to fight the fever so that the medical folks could get an accurate assessment of what was going on. Additional x-rays were ordered, which a little while later indicated that the pneumonia spot on Chris' left lung had grown. Chris received his Tylenol at the clinic and he began receiving another antibiotic via IV.

At least the pneumonia was not so bad as to cancel the scheduled "tummy tap," even if Chris was feeling miserable. Another 2 liters of fluid was drained away; this time it apparently had a cloudy appearance, so the lab is going to try to figure out if there something unusual in the fluid. While he was under anesthesia anyway (might as well take advantage of him being able to sleep through uncomfortable procedures), Chris' nose was swabbed so that the lab can determine whether this pneumonia is of bacterial or viral (or both) origin. It makes a difference because bacteria can be fought with antibiotics, but not viruses.

It doesn't usually take Chris a long time to wake up from "tummy tap" or even bone marrow aspirate procedures, but it did today. Again, it seems to be related to feeling ill. When he finally was awakened at around 3 p.m., Chris seemed to feel a little better (thanks to medication controlling the fever and fighting the pneumonia). Mom had brought in lunch for him, but he slept so that it was discarded. He wound up with a doughnut instead so that he could get something into his belly. That was necessary not only for nutrition (in terms of getting some calories into him; despite the large belly, Chris is really becoming somewhat thin and even bony), but also to have something in his stomach to help dissolve the other medications that he wasn't able to take earlier in the day, especially the salt pills. Getting the salt into him is important; his blood sodium level had dropped somewhat again. The salt/fluid issue for Chris has really been a quagmire: he needs lots of fluid for his recovery from the pneumonia and fever, but he should not have a lot of fluid for his abdominal swelling, and of course too much fluid can wash salt out of the body.

At any rate, the surgeon determined that Chris needed to be admitted inpatient again, at least for overnight, in order to see what's going on with the pneumonia. Because he was "cultured" to determine whether there is a viral origin for the pneumonia, Chris was required to go into a private room, which caused us to have to wait in the Pediatric Day Hospital bed area ("day bed area") for most of the day. Once Chris was admitted (around 7 p.m.), all visitors (including parents) were required to wear a gown and mask, at least until after the lab determines whether or not there is a viral impact. This hospital's philosophy is that if there is a virus found, then hopefully most of the airborne viral particles will remain in Chris' room, rather than be shared with other at-risk patients, if the gowns are discarded whenever exiting his room. So Dad, who is as usual spending the night with Chris, is trying to sleep while wearing the gown and mask.

Meanwhile, Mom had been working on coordinating the upcoming trip to Texas Childrens Hospital, including transportation, lodging, insurance preauthorization, and setting the first appointment. Because Chris' situation has changed a few times just within the last couple of days, this work is made more difficult because there is a lot of coordination to be done between several offices. Just as soon as she would report to one office the current situation, she would have to re-contact them to change things. The rental vehicle reservation alone was changed three times today, and will likely either have to be changed or canceled tomorrow morning, depending on Chris' status then.

For the moment, Chris has an 8 a.m. appointment at Texas Childrens Hospital on Monday morning. Unless he wakes up pretty perky and the lab can rule out virus overnight (many times such "cultures" require 3 days to fully develop), there is not much chance of that appointment being kept. Fortunately, Chris really isn't due to report in for the neuroblastoma vaccine clinical trial until next Wednesday; we were trying to get there early in order to make allowances for possible platelet transfusions and/or "tummy taps." But, if he can leave here in good shape, we may be able to still have Chris arrive in time for Wednesday. That hospital is aware of Chris' current situation and can adjust the schedule so that Chris receives the vaccine a little later. If Chris can stabilize, we'd really like him to get the vaccine as soon as possible in order to help fight this growing cancer. But, he needs to heal.

In the meantime, there is still a fair amount of work that needs doing at the RMH before we can depart. Neither the packing nor the room clean up was completed, nor can it be as long as Chris remains inpatient. But even packing was somewhat difficult because the situation kept changing. The original plan was for Mom to depart, returning to Tampa and back to work. Had that occurred, then she could only take back with her whatever she could squeeze into two suitcases and a carry-on bag, meaning things that won't be needed in Texas. However, closing the loop here and getting safely from New York to Houston with all of our stuff (most importantly, the big stroller, "Ronald," which Chris really needs right now since he's so tired all of the time) is such a big job. So, we are now tentatively planning on all three of us going to Texas, although if things go well, then Mom can break away after getting settled in there. We'll just have to play that by ear as that time approaches. (If all goes well, then the Houston trip should only be a week, plus travel time.)

Medically, Chris was weak throughout the day. Whenever the medicine wore off, Chris would feel yucky and feverish, and sometime shake pretty strongly. Tylenol did help suppress the fever, but it took some time for it to "kick in." When the medicine was working though and Chris was awake, then he remained quietly alert as he watched television. He ate a decent portion of chicken for dinner, while Uncle Brian came to visit. Chris is receiving a couple of different types of antibiotics, and may start another one over night, in order to help fight the pneumonia. His oxygen saturation was only around 94 - 95%, which means that he may also start receiving oxygen overnight in order to keep him comfortable. Right at bedtime, Chris received another one of those "breathing machines" as he calls them, used to help people right after surgery start taking deeper breaths. Chris used it just before going to sleep. It made him start coughing a little, which is good since it helps to break up some of that mucous in his throat and/or lungs.

Joke of the day -- (thanks Uncle Tom) -- How do you get four suits for a dollar? Buy a deck of cards.

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, Genie!

Love,

Chris, Alison and Pat

Thursday, January 6, 2005 9:48 PM CST

Hi Everybuddy!

It seems that the inertia of this particular trip to New York continues to try to keep us here. We're on fever watch tonight. It may be related to the fact that the little "thing" in Chris' left lung is now pneumonia. When we made our intentions to leave for Texas known to Chris' surgeon, he decided to do a "tummy tap" on Chris' growing belly so that he would be comfortable for the trip. As has been par for the course, we cannot say tonight whether or not Chris will be able to leave tomorrow, even when the purpose of departure is for more treatment halfway across the country.

The day started off normally enough with Chris doing the "normal wakeup stuff" and then heading to the clinic. Today he was in class with another child, a girl a year younger than Chris who also is contending with neuroblastoma. Class went well and the two kids interacted well with the teacher. Chris also presented that teacher a thank-you card, an apple, and a hair barrette as she has long hair; she's really done a good job with him despite the lack of input from his Florida teachers.

We expected Chris to get a full panel blood test and then check out with the both the surgical team and the neuroblastoma team, both of whom have assisted Chris over the past few months. Chris wasn't on the schedule, but they decided to see him after Dad said that our intent was to leave tomorrow, given physician permission. When talking with the surgical team, Dad asked Chris describe the pain he had in his side last night. Then the decision was made to X-ray his chest yet again. This time the X-rays indicated a small area of pneumonia, so Chris began a five day cycle of antibiotics.

Chris' blood counts this morning were: white blood cells dropped to 3.2 (normal: 4.0 - 12.0), hemoglobin dropped to 10.3 (normal: 11.5 - 14.5), platelets were 40 (normal: 150 - 450), while his ANC dropped to 2000 (normal: 1400 - 7400). His liver function results were again encouraging: bilirubin dropped to 7.5 (normal: 0 - 1.0), sodium was 133 (normal: 136 - 144), BUN was 10 normal: 6 - 20), albumin was 3.8 (normal: 4.0 - 5.2), AST was 54 (normal: 10 - 37), and ALT was 29 (normal: 5 - 37). Considering all that Chris has to deal with right now, including pneumonia, these numbers aren't too bad.

After another long day at the clinic, the guys headed back to the RMH, where Chris promptly fell asleep. After about an hour, Chris said that he thought that he might have a fever. He did, to the tune of about 39.88 C (103.7 F). So we called in, received our instructions, and began the fever watch. Although the fever was high enough that generally Chris would have been admitted inpatient, the doctor felt that since Chris was in otherwise ok shape and since he has already began antibiotics for the pneumonia, that it was ok to monitor the situation here (with Chris receiving Tylenol to control the fever) to ensure that it did not get worse. Chris pretty much rested the rest of the day. He felt pretty drained, cruddy and complained that his throat felt "thick" like he couldn't swallow anything.

Mom and Dad continued to pack up our things in our RMH room as if we're leaving tomorrow, but we really won't know until we get through tomorrow. There's a lot that has to go right tomorrow in order to allow that to happen. Even though we kept on working toward the goal of departure, even Dad wilted; he has had a painful sort of pinched nerve kind of pain in his hip for a little while now. So, although it was a slow moving afternoon and evening, we managed to make some progress, just in case the guys be permitted to leave tomorrow. Time will tell.

Chris had a very nice but short conversation with Greg, during which he let him know that we are hoping to head to Texas, and more importantly from their perspective, that we were not going to go there via Tampa. Chris was a little sad afterwards, but he understands why we're doing it that way. He was asleep when Grandma and Grandpa called in this afternoon.

From a medical perspective, things slowed down quite a bit for Chris. His bilirubin did improve but he was more tired and subdued, probably due to the pneumonia. He had a bit of nausea tonight, too. It took a while for the Tylenol to take control over the fever, but it eventually did so. It came down to 37.83 C (100.01 F), which isn't exactly perfect, but it was better. We will check his temperature throughout the night, particularly when the Tylenol is due to begin wearing off.

Joke of the day -- What game do cows play at parties? Moosical chairs.

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, January 5, 2005 9:29 PM CST

Hi Everybuddy!

Chris had an interesting day. It was just supposed to be a school day but it expanded into more things. Chris got up in time to actually eat some breakfast before heading into the clinic for school. Once there, he checked in as part of the "usual procedure" (this lets the teacher know that he's there, too). She had one other student with whom she was working, so Chris headed off to the playroom to wait. There, he helped the child life therapist set up all of the video games and then started to play. She came out a bit later with a new dance version of Sony's EyeToy (a camera that puts the kid "into the game" by requiring them to move body parts in order to control the game). Chris tested it out, and throughout the day, young kids and teenagers would stop to try it out. It's a little more complicated than the EyeToy (there are several models) that he originally showed her. Still, it helped prove a point because the kids (and occasionally a parent or two) stopped to play the game.

Chris' class time was very nice. He and his teacher covered some math, science, and social studies. Science inspired several questions by Chris later in the evening about stars and their coloration, such as why can't we see blue stars as blue. His social studies class was also interesting since the teacher provided a book for the class so that Chris could begin learning about the Silk Road and the development of trade in Europe.

The medical side of the clinic began to get interested in Chris' presence there. The neuroblastoma team asked that he get a finger poke. Once that was done and the results were back, Chris was called to the back for an examination by their excellent nurse practitioner. While that was going on, one of the oncologists walked in and gave Dad an update on options available to Chris in his current liver state. It appears that the vaccine trial ongoing at Texas Children's is Chris' best bet right now. As a matter of fact, while Dad was talking with this oncologist, Mom was simultaneously was talking to the oncologist at Texas Children's Hospital. The consensus the neuroblastoma experts here, in Philadelphia and Houston is that the vaccine seems to offer Chris his best chances, particularly in light his still-recovering liver. (Chris' own blood cells were donated several months ago in order to create a vaccine that is hopefully tailored to him yet specifically designed to target neuroblastoma.) Chris was listening to the MSKCC part of the discussion and he was interested in their soon-to-open "hot" antibodies trial; however, it appears that Chris doesn't have sufficient stem cells in reserve to join that trial. The oncologist is still reviewing that situation though.

His counts today were: white blood cells dropped to 3.3 (normal: 4.0 - 12.0), hemoglobin dropped to 11.2 (normal: 11.5 - 14.5), platelets dropped to 21 (normal: 150 - 450), while his ANC rose to 2100 (normal: 1400 - 7400). Basically, Chris asked to do the platelet transfusion today. Because he was hearing so many "no" things today, the staff said, "ok." So, he and Dad hung around three more hours in order to get that done. Chris has really learned to appreciate his new DVD player, which he used today in order to watch "The Simpsons" instead of Nick, Jr., which was on television at the time. A little laughter goes a long way in this game.

Once back at the RMH, Chris took a half hour break before doing his homework in the RMH's indoor garden. Upon his return, we had a family discussion of our options. Our goal is to try to depart New York in order to head for Houston this Friday. There are quite a number of details that need to be worked out: mostly related to work, insurance, school and medical support (probable "tummy tap" and transfusions), as well as making travel and lodging arrangements. Once again, there is a lot to do with very little time in which to do it.

We intend to drive this time (we have too much stuff with us to allow us to fly and there is a need to see wide open spaces along the way), so there are other thoughts about how to make this an adventure during the very limited amount of time available for travel. We talked about whether to head to Houston via Tampa, but Chris pretty much asked not to do that. Although he will only need to go to Houston once for what should only be a week (once he leaves, all follow up can be done locally in Tampa; Chris was happy to hear that part of the story), he won't be finished there until the day before his birthday. So, together we decided that it is best to wait to celebrate on the following Saturday so he could party down with his friend Greg. Chris and Dad left Tampa on October 25th for what they thought would be about a week in Philadelphia, then of course moved on to New York, and now will be heading toward Houston Texas. Chris is quite the traveler.

Chris had a very nice conversation with Greg and let him know that we were heading to Texas. He enjoyed talking with Grannylyn and Granddad. He missed visiting a cute New York dog named Uno, but is bound and determined to try tomorrow. He wants to see Uno before we leave New York.

From a medical perspective, Chris had a pretty good day with a few instances of stomach cramps and a more intense lateral pain right at dinner time. Tonight a "anti-gas" tablet and a Benedryl took care of his cramps and lessened the pain, although it would periodically spring up again although with lesser severity. We will be speaking to the surgery team about this tomorrow.

Joke of the day -- Where do milkshakes come from? Excited cows.

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, Aurtor and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Love,

Chris, Alison and Pat

Tuesday, January 4, 2005 9:09 PM CST

Hi Everybuddy!

Chris' day went well, and as usual up here, was a little on the long side. We knew that he was scheduled for a "tummy tap," but other aspects of the day (a routine blood test and a liver function blood test) were ad-libbed and prodded by Dad. Chris slept in a little late (until about 8 a.m.). That's because he was "NPO," or not allowed to eat or drink anything before the "tummy tap" procedure that was scheduled for around 1 p.m. The guys arrived at the clinic, and after Chris was called into the finger poke room, they realized that someone had dropped the ball on requesting Chris' liver function test, as previously discussed. Dad worked on correcting that problem while Chris attended class.

Class went well; he and his teacher worked on math this morning. One-on-one with a teacher lets them develop a good rapport and they are able to get a lot done in a little time. The teacher also took a look at Chris' first draft of his school project on the State of Indiana. After finishing her work for the day, Mom helped Chris with his Indiana project by finding a plain white T-shirt (believe it or not, they are harder to find here than one might expect) onto which Chris could "iron on" the stencil design that he created representing Indiana. Mom also found a wooden model old-fashioned race car that Chris will need to build and paint for the required 3D model of something representative of Indiana. (You may recall that Chris did a project last year on Indiana; this one is much more detailed and builds from last year's project.)

Chris had to do a lot of waiting in-between class time and his procedure. Chris spent most of the time either reading his new book of the Bartimaeus Trilogy, playing his GameBoy DS, or "playing" with his digital pet (it plays, "eats" and does other unpleasant things -- electronically). Mom linked up with the guys just as Chris was called into the procedure room. The "tummy tap" went well; about 1.2 liters of fluid was drained from his abdomen. No follow-on albumen nor Lasix was ordered today.

Soon after the procedure, Chris ate and drank a snack. Then the psychiatrist that Chris saw last week found us. He basically didn't have a plan that could be started yet, but he needed to meet with Chris' surgeon and oncologist. He said that he really needs to know what Chris' medical plans are going to be so that he knows whether it is best to start something here or in FL or even somewhere else. We're hoping for something we can implement in Florida, if anything is warranted. Chris passed on an opportunity to meet with him one-on-one today. Chris seems to be a little more hopeful that he might move out of New York soon and is buoying himself with that thought. However, he still is not his normal bouncy self. He remains weak and unable to move very fast at all. He also has told Mom about stomach cramping but asked her not to tell the doctors for fear that it could delay his departure. When he's thinking about it, Chris seems to be trying to do or say whatever he thinks will provide his "ticket" home.

Once back at the RMH, Chris took a half hour break before doing homework with Mom. Mom also helped him with some more research about Indiana (did you know that there are more major highways per square mile and more highway intersections in Indiana than in any other state, which allows it to maintain its motto, "Crossroads of America?"). We ended up leaving off on that note since we had promised to go to dinner with one of the RMH's directors. She has been a real supporter for years and she recently helped out us out of jam by sending Chris some medicine that we had inadvertently left in New York last year. We had a great dinner at the Outback, and everyone had to laugh as Chris tackled an ice cream float (he's really been into dessert lately). He ate about half of it, but stomach cramping put an end to that.

Chris had a very nice conversation with Greg today, which mostly was about the possibility of Chris heading home soon. There was a discussion of things like bilirubin and platelet levels and all -- you know, things that all eleven year-old boys talk about. He also had a brief conversation with Grandma and Grandpa and it was universally felt that last weekend in Norfolk was awesome.

We have blood counts to report today (we don't get paper copies of his blood tests as often up here). His counts today were: white blood cells dropped to 3.0 (normal: 4.0 - 12.0), hemoglobin rose to 11.4 (normal: 11.5 - 14.5), platelets rose to 37 (normal: 150 - 450), while his ANC dropped to 1400 (normal: 1400 - 7400). His liver function results were more encouraging: bilirubin dropped to 8.2 (normal: 0 - 1.0), sodium was 136 (normal: 136 - 144), BUN was 13 normal: 6 - 20), albumin was 3.8 (normal: 4.0 - 5.2), AST was 66 (normal: 10 - 37), and ALT was 31 (normal: 5 - 37). Considering where Chris has been recently, these numbers aren't too bad.

From a medical perspective, Chris had a pretty good day with a few instances of fairly intense stomach cramps right at dinner. Again, Benedryl (a truly remarkable drug) took care of his cramps. His original cramp was caused by walking too fast.

Joke of the day -- (from Uncle Tom) -- What type of animal makes the sound, "oooo, oooo, oooo? A cow without lips.

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, January 3, 2005 9:39 PM CST

Hi Everybuddy!

Chris' day went well although it was longer than we had expected. Despite the increase in dosage of the Thalidomide, Chris awoke pretty energetic and did a good job getting through his morning medication and breakfast. The guys headed to the clinic while Mom worked on various projects back at the RMH for part of the morning.

Chris came prepared for class even though we weren't certain that school at the hospital would start back up today. It did. He and his teacher focused on science today. But for one interruption so that Chris could get a finger poke, his class time went well. Chris likes maps and some of today's work involved looking at a map. Mom met the guys about an hour before Chris was called back to the bed area for his platelet transfusion.

As you may have guessed, the finger poke results indicated that Chris needed
platelets. His counts today were: white blood cells were 3.1 (normal: 4.0 - 12.0), hemoglobin was 11.1 (normal: 11.5 - 14.5), platelets dropped to 14 (normal: 150 - 450), while his ANC was 1800 (normal: 1400 - 7400).

Chris spent part of his day at the clinic reading, but he did bump into his friend Michael. Unfortunately, the boys were again on different schedules and as a result weren't able to hang out together very much. Chris also had a few minutes in the playroom without anything in particular to do. That's when the "Kids Kicking Cancer" karate instructor invited him to join her group, which was already in progress. Chris did work on a couple different kinds of punches, which he performed pretty well although not with any strength. Then he was called to the bed area, where platelet transfusion went without any difficulties, during which Chris slept through it. Eventually, we headed back to the RMH.

From a medical perspective, Chris had a pretty good day with only a few instances of fairly intense stomach cramps, through which he managed to control without any medication. For example, the cramping can be set off by walking too fast. However, he can recover from that by stopping and resting in place for a few minutes. His belly has continued to grow bigger and his weight has increased; he is definitely retaining fluids. Again, he ate modestly well throughout the day. Chris' attitude varied throughout the day, ranging from "quietly normal" to hypersensitive. Fortunately, he was in pretty good shape for most of the day.

Joke of the day -- (from Uncle Tom) -- What do you call a cow spying on another cow? A steak out!

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, January 2, 2005 9:53 PM CST

Hi Everybuddy!

We have safely returned to New York again. The weekend trip seemed to have done a
great job in reenergizing Chris' morale. He was treated like royalty by his grandparents and aunts, uncles, and cousins. It was a very relaxing time; during the drive back, Chris even said that he thought that he didn't need to see the psychiatrist again (we'll see about that though, especially as time goes by). The drive went very well, and even the New Jersey Turnpike was kind to us. Chris spent most of the time either reading or playing a video game.

Between all of his relatives in the Norfolk area, Chris was treated to all of the foods that he had sorely missed over the course of these past couple of months. He had a wonderful "second Christmas." It doesn't get much better, especially in terms of allowing Chris to unwind, decompress and otherwise feel like the suburban kid that he is.

Before leaving this morning, he and Mom enjoyed a pancake breakfast. Dad, Grandpa and Aunt Jackie were in the kitchen at breakfast time, too. It was a nice treat to have everyone together for meals; it's not uncommon for a meal to be spent with one parent or the other while in New York. Aunt Jackie came by Grandma and Grandpa's house before we left, not only to see us off but also to pick up Cousin Ryan, who had spent the night. Chris managed to maintain his composure during the farewells but we could tell that he really didn't want to leave, not only because he would be leaving his Norfolk family, but also because he knows that upon returning to New York, he'd be subjected to being poked and prodded and he just "knows" that the doctors won't let him leave again. He is wise enough to know that he still has quite a battle ahead of him in beating his cancer, but his departure really wasn't as bad as Mom or Dad thought it might have been.

Before leaving Norfolk, we made one stop to pick up a resupply of more happy face pins before heading back to New York. After a little wait (during which Chris went shopping at the Target store next door, where he had purchased another season of "The Simpsons" on DVD; he was able to watch part of it while eating dinner tonight.), we were successful. We then headed straight to New York; we had no idea whether we might run into a difficult time trying to reenter the area, from a traffic perspective. We were happily surprised to find that traffic flowed quite well but for part of Staten Island (Uncle Brian had forewarned us that such could happen), and at one point in Brooklyn. When we got back to the RMH, Chris and Mom took our things upstairs and collected the mail while Dad dropped off the rental car. Chris received a box from Aunt Jackie, Uncle Bobby, Cousin Sean and Cousin Ryan (since they didn't know that we'd be coming to visit, they shipped the package to Chris in NY). When he opened it, he grinned and said, "Give me the phone." He wanted to thank them right away for the portable DVD player (which coincidentally Dad had promised him if they ever had to take to the road again for treatment) and a couple of games. Well, that time has come. He can also plug his video games into it so he can see and play them; not all RMH's around the country have a TV in each of their rooms.

From a medical perspective, Chris had another great day and didn't have any cramps until after dinner. He still has a fluid retention problem; with his enlarged belly, he is definitely a candidate for another "tummy tap." This is one of his major concerns as he really doesn't like getting that big; it's very uncomfortable and causes other problems (like "heart pain," which seems to be heartburn, and itchy skin especially on his lower abdomen).

Joke of the day -- (from Uncle Tom) -- A hungry lion was roaming through the jungle looking for something to eat. He came across two men. One was sitting under a tree reading a book; the other was typing away on his typewriter. The lion quickly pounced on the man reading the book and devoured him. Even the king of the jungle knows that readers digest and writers cramp.

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, Artur, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Good night Genie!

Love,

Chris, Alison and Pat

Saturday, January 1, 2005 9:34 PM CST

Hi Everybuddy!

Chris started the new year off in a memorable way. He had a great time with several of his cousins. The day started off normally enough with the usual wake up and breakfast, but then it shifted into overdrive. Breakfast was a little different, even for Chris, as he had about a 1/4 of a waffle and about half a piece of pizza. But, it went into the belly and stayed there, and Chris was happy about it as well. Just after breakfast, Chris got an invitation to spend the day at Aunt Jackie's house.

He played a video game for a bit while Mom and Dad got things together before heading on over there. We made two stops along the way. The first stop was to a 7/11 store, where Chris bought yet another Slurpee (this one Pepsi-flavored). The next stop was to the local Toys R Us store, where he spent his Christmas money on a music kit that had an instruction book for his ocarina, an accessory kit for his GameBoy DS, and another new video game.

As soon as we arrived at Aunt Jackie's home, Chris linked up with Cousin Ryan, and the two of them started playing his new game. They took turns playing the game throughout the day, afternoon and even the night (Ryan came over to Grandma and Grandpa's house specifically to play video games with Chris for a "sleep over" night). It's a difficult game but the two steadily are working through it. Even though Ryan is a senior in high school, he is very good with Chris, and they have a lot of fun together.

While the boys were working on the game, Uncle Pete and Aunt Belinda stopped by for a while with their kids, and the party got merrier. We haven't seen them in a couple of years, so we had a really nice time. They gave Chris a very nice Christmas present, and Chris learned that Cousin Paul (who is also a senior in high school) is also a video game enthusiast. Maybe next time they can get together, too. Their daughter Bridget is a dancer, so Chris gave her the pair of finger cymbals that came in his music kit. Chris thought that she was nice, but he just couldn't keep up with everyone today (his tummy has grown considerably again and he just can't move around so much right now). Unfortunately for us, they had to leave since they were going to drive north to meet with Uncle Ed and Aunt Debbie this afternoon. Soon after their departure, a pizza delivery man arrived from (you got it --) Papa John's Pizza, and gave Chris yet another opportunity to sigh thankfully (thanks Uncle Bobby) as Chris continues to recharge his taste buds with flavors from home.

Later in the afternoon, Grandma and Grandpa arrived and stayed for dinner. They spent much of the time watching Chris and Ryan work through the video game. It is a very impressive game, and since they were playing it on a big screen TV, it often seemed as if they were almost in the game. Grandma and Grandpa were impressed.

Dinner was a traditional barbecue, which included black-eyed peas and collard greens (a Southern New Year's "good luck" tradition). Chris didn't eat them, but he did eat quite a bit of another surprise from Aunt Jackie: macaroni and cheese from the Outback Steakhouse. He almost went into culinary shock over his good fortune and he ate well again.

After dinner, Chris opened up still more neat presents. By then though, it was getting rather late. Cousin Ryan accompanied us back to Grandma and Grandpa's house where he and Chris are staying up late to play some more of the game. Chris will have plenty of time to nap in the car on the way back to New York City tomorrow, but they don't have so much time to visit with each other.

Both Mom and Dad have noticed that Chris is in about the best spirits that he's been in since Greg's visit, but is a little more healthy (despite the growing waistline). He was closer to his normal "bouncy" self. Still, he is a long way from actually being there. He has great difficulty walking up stairs and getting up after being seated for a while. Chris also tires easily, but since he's been pacing himself as he plays the videogame (he's active with the game, but not physically active), it's been a little less noticeable today. He has been most interactive with Ryan and orally responds to actions in the game, which is better than he has been recently.

From a medical perspective, Chris had a very good day. He took one Benedryl for a hive that he found once he got back to Grandma and Grandpa's home. We don't what might have caused the hive though. He generally had a great day but vented some frustration about belly soreness from the swelling when he took a shower. He got over that mopeyness when Mom and Dad let him return back downstairs to keep playing rather than sending him straight to bed.

Chris also spoke briefly with Greg today, and was glad to hear from him since he hadn't heard from him since last year (ok, it's a bad New Years joke, we admit it). He enjoyed
reuniting with all of his cousins who live in the area.

Joke of the day -- (from Uncle Tom) -- Knock, knock. Who's there? Ice cream soda. Ice cream soda who? I scream soda people can hear 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, Irmel, Donald, Andrew, Artur, and all of the young cancer survivors, along with those who have fought bravely against insurmountable odds.

Happy New Year!

Love,

Chris, Alison and Pat

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