Journal History
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Wednesday, November 12, 2003 11:04 AM CST
Hi to all! I guess it's been awhile...and yes, that means all is going well. October 18, 2003 marks the fourth anniversary since Adam's diagnosis with MDS/AML.
Adam's in 3rd grade now, at a new school....riding his bike to and from school now and feeling quite independent. There is a small market across the street from the school where he and his friends like to stop in and buy a snack before they pedal home from school.
School continues to be a challenge for Adam, especially reading and writing. We have a tutor we'd like to have work with Adam a couple of evenings a week but are waiting for a slot to become available in her schedule. We are hoping the extra one-on-one time with a "Title 1" trained teacher will give him the boost he needs. He continues to receive extra reading help during the day and has an excellent classroom teacher who is working with us.
Adam will be having surgery, probably sometime in January for a hydrocele...a small opening that is allowing abdominal fluid to drain into his scrotum. It's a pretty routine surgery...though most boys who have it are diagnosed during infancy. However, though it's routine, because of some of the chemos Adam received prior to his transplant, we needed to have tests done on his heart and lungs before he receives general anesthesia. The pulmonary testing was just done about 6 mos. ago so we didn't need to repeat those tests but he did have to have and ECHO and EKG of his heart done last month. We are still waiting on the results of those tests before the surgery is scheduled and we proceed. So it's looking more like January. His recovery should be similar to that of a hernia operation...home from school a couple of days and then no heavy physical exercise for about 6 weeks. No karate!
Otherwise Adam is doing great....a NORMAL 8 year-old boy!
Patti
Wednesday, May 28, 2003 2:25 PM CDT
Adam is doing wonderfully! He had a clinic appointment in early May. Blood counts looked good. Adam was able to do the pulmonary function testing (PFT) this time so we now have a baseline for future testing. All of his result was in the normal range. We were thrilled to hear we wouldn’t need to return to Clinic until next April…but that was short lived. Adam’s thyroid functioning tests came back low. Thyroid dysfunction can occur soon after a bone marrow transplant but more typically starts three to five years after treatment. Megan & I both have hypothyroidism, which we take a synthetic hormone daily for. Adam’s thyroid problem is different though. His is called compensated hypothyroidism where the thyroid is actually working too hard. He is being given the supplemental thyroid hormone to allow his thyroid gland to rest. His will need to be monitored much more closely as an over stimulated gland is at increased risk of developing tumors. We return to see Dr. Nieder in a couple of weeks for follow-up.
Adam continues to grow taller which is a good thing….his growth hormones are still working.
He’s playing soccer, doing karate two nights a week and will begin baseball this summer. We were hoping he’d be ready to do the swim team with Megan this summer but he still doesn’t have enough stamina. We will wait one more year yet. He was discouraged during swimming lessons this winter that he couldn’t swim the laps like the other kids. So it’s best just to wait.
Not much else new to report. Kids are anxious for school to let out. We plan to visit my brother in Oklahoma in early July and then Hilton Head later that same month. Megz (as she now likes to be called) is hoping that her dad will give her the OK to get her own puppy this summer. The jury’s still out on that one!!!!
Happy summer to all!!
Friday, February 28, 2003 1:34 PM CST
Adam turns 8 years old today!!! Three and a half years ago we weren't sure we'd see Adam turn 5 and here we are at 8!! Adam is doing FANTASTIC! Emotionally, mentally, and physically.
School is going well this year. With some intense reading instruction at school and a consistent reading time at home he's improving tremendously. Studying for spelling tests is requiring less time now. He still enjoys math and anything to do with numbers. Math projects are completed with little effort. Adam's class will be taking some standardized tests in March which will provide some more information as to his progress.
He's becoming more independent in more ways at home too...which has been a gradual process. So much was done for him for so long that he still tends to want help with dressing, showering, entertaining himself. Most things he can do...it just takes him more time than other kids and he gets frustrated that he can't always keep up. Maybe it's just a coordination thing...and it's normal boy stuff. Whatever, he's coming along.
He's still as skinny as before, funny about clothes and textures. He will wear ONLY fleece right now and sleeps on fleece and covers with fleece. But he has always been funny about textures. Hates anything sticky! The kid who had a huge bandage over his chest for 6 months...and he still can't stand sticky!
Adam's immune system must be doing pretty good as he's not been sick this winter near as much as in the past. A cold in December was progressing towards pneumonia but after about 6 weeks cleared up. Another cold in January cleared up on its own with no doctor visit. Megan had the flu over a week ago which Adam has managed to resist.
He has also finished the bulk of his re-immunizations as of January. Next booster shot won't be for another couple of years.
Adam and I began taking karate classes in January together for eight weeks. Adam took to it right away and absolutely LOVES his karate classes. I think he'd go every night if we'd let him. It has given him confidence and he has seen the results of his efforts already. He thrives on the discipline and just "puffs up" when Master Perry asks for his assistance to demonstrate a move. I have a hunch that he's felling pretty proud of the fact that he passed his Mom up a long time ago. She just doesn't get it!!! Those who know me well know how my eight year old could surpass me in something requiring coordination and stamina. I begged out due to a sore hip (hmmm) a while back. After sitting out two classes, I knew I was having more fun talking with the other parents and watching Adam and soaking up his happiness. Things I couldn't do while I was struggling to keep up with the sit-ups and pushups. Last weekend Adam had his first karate test. If he passes, he will now be a yellow belt.
We also have him signed up for more swimming lessons this spring at the YMCA to hopefully increase his endurance enough so that he can be on the summer rec. swim team that Megan enjoys. Swimming will be an excellent sport for Adam. Easy on his joints but excellent cardiovascular exercise.
Other news....my Mom just had surgery this past Monday for a total hip replacement. She's doing well...now moved to a rehab place as of yesterday. She did a good job preparing herself ahead of time for the process...even requested some PT ahead of time to strengthen her other muscles...particularly her arms. Upper body strength is needed now to help her get up and move around with a walker. It's going to be a couple of months of lots of hard work...but she's prepared herself for that. And, being only an hour away, I can be there to help out as much as possible. My sister who's 3 hours away is also available.
So, overall....life is good here. On a day like this....Adam's birthday, it's nice to take a moment to reflect on the progress he has made since he was 4 and a half. And to appreciate the joy of having him in our lives.
Thanks to all of you who continue to share your interest in Adam's life.
Patti
Tuesday, November 12, 2002 at 04:31 PM (CST)
Adam had his 6 month clinic appointment yesterday. It was a relief to hear that all is well, no serious lingering issues and most importantly....his blood work was within the normal range!!!!
Adam gained 2 pounds since the last visit, much to my delight as I had thought he'd lost weight. We are to continue nutrition supplements for calorie intake as well has vitamins and minerals. Appetite still tends to be low. (Adam's Halloween candy begs to be eaten!!). Bald spots/thinning hair around his temples is still evident. Dr. Nieder says that this is probably permanent....a result of the BMT process. Not a problem really...he certainly has enough bangs to cover the spots! Pulmonary function tests still need to be done to monitor for lung damage from chemos. Adam tried to do the tests last December and was too young to follow instructions. The tests will be tried again at the next 6 month appointment. Leg pains during the night continue but Dr. Nieder says they are mostly likely growing pains. I'm no longer too concerned as they have not progressed in frequency nor is their any other symptoms.
Needless to say, we are thrilled with Adam's good health now. We will never take it for granted though.
Patti
Wednesday, October 16, 2002 at 11:33 AM (CDT)
Adam is doing great! Physically, he's much stronger and can keep up with other kids his age much better. He LOVES to climb trees, ride his bike and scooter and run around with neighbor friends. He has played soccer this fall and will start some winter swim lessons soon in anticipation of being on the rec center's swim team next summer.
School continues to be a bit of a struggle....reading, spelling and writing. The school is working with him though...giving him some extra help in all three areas. He tries so hard with his reading.
Not much else to report. Adam has a clinic appt. in November. I will update then.
Patti
Tuesday, May 07, 2002 at 01:51 PM (CDT)
Adam is now 28 months post transplant….and doing EXTREMELY WELL. We had a clinic appointment yesterday which was uneventful. Adam’s blood counts continue to look healthy and are now at the low end of normal. He has gained a few pounds, which is unnoticeable since he has also grown taller. Consuming enough calories per day continues to be an issue but with nutritional supplements, we are content.
We are to continue with Adam’s re-immunization schedule, which will take 24 months. We discussed possible allergies, as Adam seems to be congested most of the time. Since we put a HEPA air cleaner in his bedroom, he does seems to be breathing better at night which points to an allergy of some kind since the air filter is helping. So, we will try a low dose prescription allergy med. to see how he does.
We may need to visit the Cleveland Clinic’s enuresis clinic (bedwetting) to identify whether Adam may have a physical problem causing nightly bed-wetting or if he is just late to mature. For now, I think we will wait it out through the summer and see if things improve. This is nothing in the whole scheme of things for us to worry about.
Adam continues to have leg pain, (ankles and knees) during the night. Dr. Nieder still thinks that these are just growing pains. So, for now, I will continue to document occurrences. We are somewhat concerned about this ongoing pain, as we know that there are some pretty nasty things that can go wrong with bones after transplant but since there is no redness or swelling, nor a specific location, I think it’s ok to watch and wait.
As for Adam’s day to day life….he’s running and playing like any other 7-year-old. He’s playing soccer (which he loves), taking swimming lessons right now with more to come in the summer. And he’s signed up for t-ball again. Also, the kids and I will be running/jogging/plodding/walking in a 3 mile run this Sunday…. Mother’s Day. Tracy will be somewhere along the path to pick up one of the three of us, if necessary. We are excited about this and if all goes well hope to run some additional 5k’s this summer.
That’s it for now…check the photo album. I’m uploading a photo of Adam from the ice show he was in at the end of March.
Patti
Wednesday, March 13, 2002 at 01:23 PM (CST)
Hi to all,
It's been awhile again. Adam turned 7 years old on Feb. 28th. Hard to believe....and we are now in our 27th month post transplant and all is going well. The worry is still there.....always will be, I think.
Adam's school testing results were excellent! Not sure why there is a discrepancy between the hospital neurpsych testing and the school testing....(ie. the hospital results showed signs of early dyslexia). Based on the school results and what we are seeing at home, Adam is NOT dyslexic. He is reading and has shown great improvement since he was in Reading Recovery (a one on one program...teacher and student) He has since graduated from the program and has progressed to being one of the stronger readers in his reading group in class. The math and analytical reasoning portion of the testing he did extremely well on which didn't surprise us. He tested at the 3rd grade level. His interests are definitely strong in math areas but not in the reading/writing category. So we will continue to work and concentrate on improving his reading and his writing/handwriting skills. These results have been a huge relief for both Tracy and I...though we are aware that we are still in the early period of time for neuro damage caused by the chemos. Years 2-5 post chemo are when the weaknesses begin to surface.
Physically, Adam is getting stronger. He weighed in at the pediatrician's office yesterday at 48 lbs. which is about a 4 lb increase since December. We are continuing with the nutritional supplement twice a day...lunch and dinner. Yesterday, he received his first round of re-immunizations....4 shots....one in each arm and two in one thigh. OUCH!!! He was not happy but toughed it out. We will have the next round in 2 months...though I think his titers will be checked during our April appt. with Dr. Nieder to be sure his immune system was strong enough to make the proper antibodies.
Adam has also had what we think was an eye virus which took two trips to the pediatrician and two different meds to get rid of. Since that time, both Tracy and I developed eye infections also so we are pretty sure Adam had a virus and not a GVHD symptom. He also has some dry skin patches, mainly his forehead that need to be looked at by Dr. Nieder. I don't think they are GVH either, more like an excema-type rash.
Both Adam and Megan are busy with ice skating practices preparing for the ice show coming up the weekend of March 23/24. Megan was in the show 2 years ago and loved it so this time Adam decided to join the fun too.
That's about all for now. Check the photo album as I will be updating today sometime.
Patti
Thursday, January 10, 2002 at 06:30 PM (CST)
Hi to all....it's been awhile. A good sign actually....we are busy living "normal" lives.
Adam, who is now 2 years post transplant as of Dec. 30th is doing very well. We saw Dr. Nieder and Vicki on 12/31. Adam tried to do the pulmonary function tests but was not able to do even the easiest one. ( He couldn't do them because he's too young, not because his lungs weren't in good shape) He will try again in 6 mos. as he will need to have these tests done every year or so. Blood counts were good and immune function studies show that his system is ready for re-immunization. We will be starting immunizations shortly. No chimerism studies were done which was disappointing. Even though we can see by Adam's blood counts that Megan's cells are working strong, we would still like to know what percentage of Adam's bone marrow is actually Megan's cells. But, Dr. Nieder feels that as long as the blood counts look good, then Megan's cells are dominating.
Tracy and I have been concerned about continuing, but intermittent, leg pain that Adam has. It doesn't occur in the same leg all the time but does seem to center on his knees...sometimes his ankles and shins. Dr. Nieder feels these are only growing pains. We are not so sure.....and may pursue this further. The fact that leg pain was the early symptom he had during the summer before diagnosis leaves us feeling that we need a more solid answer than just growing pains. It could be osteoporosis too....
Adam continues to like school...his reading skills are coming along. The school is in the process of testing him right now....we don't think he's dyslexic. He likes to ice skate, especially Friday night skate when he sees lots of friends.
Insurance woes continue...Tracy and I consulted with a doctor at the Cleveland Clinic on Monday and were not excited about their program. They refer out almost all of their pediatric bone marrow transplants...the ones they do in-house are handled on the adult floor. The fact that they don't follow many pediatric BMT'ers also means they don't routinely see/monitor late effects from BMT's and the associated chemos that are given prior to transplant. Not the setting we would choose to be in! The insurance company is remaining firm that it is in our best financial interest to switch....by staying with Rainbow/UH we leave ourselves open to non-contracted rates on top of 30% we would owe. Very maddening to see how these insurance's can force their hand in areas they really shouldn't. We haven't made a firm decision yet, but our plan is to stay with UH where we know Adam's getting topnotch care.
That's about all for now. I hope to scan some new pictures soon to upload onto the website.
Thanks for your continuing interest in Adam.
Patti
PS. I've been following a young boy's website, named Tom. He was just transplanted the other day at Duke. He is from the UK. They couldn't get him into a remission to tranplant over there and they don't tranplant if the patient isn't in remission. His father, thru internet contacts, arranged to have him brought to the US and is paying out of his pocket to have Tom treated. Makes our insurance complaints seem miniscule! His website is: www.thekassars.com/tom/ login name: tom password: neopets
Saturday, November 03, 2001 at 09:31 AM (CST)
Hi!
Adam's facial "zits" turned out to be impetago (a staph infection) and he also tested positive for strep on a throat culture. Interesting that he hasn't had a sore throat. So, he's on an antibiotic to attack both strep and staph. The worst part for him was that he can't play with friends yet today, nor could he go to a first overnight birthday party last night.
Glad to finally know what was going on with his face....I didn't think it was chicken pox as it didn't itch. The school had a case of viral menegitis a week ago so when they called me yesterday morning to say they were putting ice on Adam's neck because he had a sharp pain that then became a headache...that was enough for me to pack him in the car and get all these symptoms checked out. The "neck thing" must have just been from turning his head funny because he hasn't said anything about it anymore.
Tracy and I met with school personnel on Thursday a.m. and we all decided that it would make sense to have the school do the multi-factoral evaluation on Adam which will begin soon. We meet again next week to talk about which tests they will do. All of us are questioning some of the results the psychologist at Rainbow came up with. So, we want to have the school use different testing tools to compare with the Rainbow tests.
We are feeling more comfortable with the process ahead now that we have the "ball rolling" so to speak. The school must move on the testing now (they anticipate 60 days to complete) so that by second semester we will have some answers.
Adam does seem to be doing better with his reading skills now that he's in Reading Recovering (one-on-one tutoring program). Though we are still concerned by how much concentration and effort he needs to put forth to accomplish what comes easier to other kids. What will happen when his reading load increases...will he retain comprehension and be able to keep up with the class? The testing will help sort out some of this.
As usual, Adam is oblivious to alot of the concerns that we have. Doesn't even question why he sees Mom and/or Dad up at his school for meetings. As he did throughout his treatment, Adam adapts .
Patti
Monday, September 10, 2001 at 09:47 PM (CDT)
Adam had a clinic visit today. Overall, he's doing very well. His counts are down slightly, most likely because of a cold he has come down with. The hematoma on his head from the fall early in August is almost completely gone. A CT scan was done last Friday....we were hoping to have the results before we left for University Hosp. this afternoon but they weren't available. I will followup tomorrow.
Adam's weight is up and he's grown taller which are both a good sign....his growth hormones are functioning. Areas of some concern are few. He does have some alopecia (bald spot) under his bangs on the right side. We may need to see a dermatologist who has experience dealing with alopecia resulting from graft vs. host disease. For right now, we will wait and watch.
Adam also may have some difficulty with fine motor development. This we will also watch.....he may just need more time.
We will also be scheduling neuropsych testing just to make sure that Adam is developing well in other areas. Because Adam didn't have radiation prior to transplant he is less likely to have neuropsych difficulties than kids who have had radiation. But, he is at higher risk than healthy kids because of the chemos he received. These late effects many times do not show up until a few years post treatment.
When we return for our next clinic appointment in December, Dr. Nieder will be doing immune function testing to see if Adam's system is ready to begin immunizations. If all looks good, we will begin those in January. Chimerism studies will also be redone in December. This is the test that tells us how many of his bone marrow cells are Megan's. Hopefully all, or near all are Megan's. Lastly, Dr. Nieder wants to try to do a pulmonary function test (PFT). Adam's lungs could develop a fibrosis type disease as a result of the Busulphan drug that he received. Normally patients will have had this test done already but because of Adam's age, it was decided to wait until he was older and could understand what he needs to do for the test. So, hopefully, he'll be able to do the test so that we can get a baseline for future measurements.
We also need to have some scans done the next time we go to the dentist to see how Adam's adult teeth have been affected. We will have this done in January.
Adam was happy and proud to show off pictures of Madison to Vicki and Dr. Nieder. Dr. Nieder is also a German Shepherd lover....he has two! We talked about Adam's memories of the transplant...which are few! He fondly remembers his favorite nurse, Kathy, a few of the more painful moments but mostly the fun he had with Mom or Dad being with him 24 hours a day. Sadly, I learned that one of Adam's Nintendo buddies has passed away. Brian was the boy who helped Adam learn how to play Mario. Sometimes I'm afraid to ask how the other kids are doing.....too too many don't survive.
So, I guess this means I can settle back and relax again until the next appointment. It's always a big relief when the appointment goes well or as expected. For now....we can enjoy the normal day to day activities of a 6 year old first grader. Adam's friendships have blossomed over the summer....we seem to be the magnet for the "kid hangout".....I love it.!!! A house full of kids, a puppy, lots of noise.......painting????did I say I was going to get a lot of painting done this summer??? Ah well...maybe next year.
Fondly...Patti
And yes....I will update the photo album.....it fell by the wayside like the painting did!
Thursday, August 30, 2001 at 08:51 PM (CDT)
Adam saw Dr. DiGregorio on Tuesday as scheduled. The bump is still present but slowly decreasing in size. We return on 9/7 for another exam and then go for the CT scan to be sure all is healing properly.
School is going well....Adam just takes the change in routine in stride.
More later....Patti
Monday, August 13, 2001 at 07:20 PM (CDT)
Dr. DiGregorio reviewed the CT scan with the radiologist and decided to do nothing as long as Adam is asymptomatic. A follow-up CT scan will be in two weeks to be sure the fluids are being re-absorbed. Blood counts were good...platelets at 217,000 which is in the normal range.
No bike riding (boohoo says Adam), rollerblading, or other "creatively dangerous" boy games for the next few weeks.
What a relief...I must admit....we were a little nervous about this one!
Patti
Monday, August 13, 2001 at 10:50 AM (CDT)
Saw Dr. DiGregorio again this a.m. She seems to think that Adam had a concussion from the fall. We may need to see a neurosurgeon because there is a small amount of blood underneath his skull. We had blood drawn to check platelet level. Dr. Di will then talk with Dr. Nieder to see what (if anything) needs to be done at this point. Either way, Adam is off his bike and no rough play for a couple of weeks until the blood is reabsorbed by his body.
More later today after Dr. Di calls.
Patti
Saturday, August 11, 2001 at 05:36 PM (CDT)
Only a bump…or so it would seem. Adam slipped and fell on wet pavement a week ago yesterday and bumped his head…normal kid play you would think. He had a bump on his head but was fine other than that. The spot was sore for a few days but was soon forgotten amidst the chaos of summer activities and playing with friends. Last night, (Friday night) Tracy noticed that the area around the bump felt soft and jelly-like. A visit to our pediatrician Saturday morning sent us to the hospital for a CT scan….mainly to rule out a skull fracture. There is no fracture but rather a hematoma (a pocket of blood). We will follow-up with a visit to the pediatrician on Monday and probably have blood work done to check platelets (clotting factor). The last blood work done in June showed Adam’s platelets in an excellent range….249,000. At this point we aren’t sure why this bump hasn’t healed like a normal bump or bruise. Our worry baraometer only reaches alarm level when we are faced with a hospital admission, which is not the case here. So, we will settle back to the routine and find out more on Monday.
Other than this accident, Adam has been doing great….a few skinned knees and elbows…normal boy stuff. We have concentrated on improving swimming skills with lessons almost every day this summer, which has helped Adam’s endurance as well as swimming skills.
I do intend to update the photos on the website shortly…our camera broke while in Oklahoma this spring so until we get a new one, I’ve been using disposables. Much harder to get good close-ups.
Madison is doing great. Almost housebroken…loves to chew…especially little ankles.
Patti
Sunday, July 15, 2001 at 05:30 PM (CDT)
Check out the photo album....pictures of the newest member of our family.
PS
Friday, May 25, 2001 at 12:28 PM (CDT)
Hi...I guess it's been awhile since I've updated. That is a good sign....as Adam is doing well. We have another clinic appt. the first week in June.
Other than a couple of viruses (one that landed us in Oklahoma City's emergency room while on vacation visiting my brother), Adam has been feeling great and developing into a normal six year old boy. He has all kinds of little buddies who come over to play now and we seem to be the house where all the action is...which is great! I love listening to and seeing Adam so normal.
He did finally have his EKG and Echo of his heart which will need to be done yearly to monitor for any damage that could occur as a result of certain chemo drugs that he received. His EKG looked fine....and wonder of all wonders, the ECHO seems to have gotten lost in the hospital somewhere. Hoping we don't have to redo it as Adam is still not very fond of sticky things. But, he's a trooper and will do it again if needed.
Megs is also doing great. Homework and friends take up her free time. We are so lucky that the kids have so many friends within walking distance...there's always someone to play with.
That's about it for now. More updates after our next clinic visit.
Patti
February 13, 2001
More good news.....life is good!! Adam's immune studies came back (earlier than we had anticipated). His immune system is normal.....well the low end of normal but...heck we'll take it. That means he should be able to fight off infections pretty well from here on out. Yahoo!!
Chimerism results (Fish for the Y) were also back this morning. Again 247 out of 250 cells counted were Megan's. Though we'd like to see 250, Dr. Nieder has assured us that a little less than 100% is OK. In fact, research is moving in the direction of allowing some of the patients own cells to survive the chemos and radiation. It's a catch 22 really...finding the least toxicity of the treatment yet not having too many (if any ) of the patient's cells survive. In the future world of BMT's, we will probably be seeing more patients like Adam who "house" their own and donor cells. In the perfect world, we would of course love to see all 250 cells be Megan's...all it takes is one bad cell........but we won't go there!!!
Cheers from a very SUNNY house in Rocky River....Patti
Monday, February 12, 2001 at 07:18 PM (CST)
Our Fantasy Flight
The four of us had a very special night this past Saturday. We were invited to a Make A Wish Foundation party hosted by United Airlines. We arrived at United's ticket booth at about 5:30 and were adopted by our United family, Marcy and Joe Kaufman. Joe has worked for United for many years and presently works in their Sales department. Joe and Marcy directed us to the party "gates" where there was oodles of stuff for the kids to do and characters to meet. Face painting, caricature portraits, wild reptile-like animals to look at and pet (we didn't!), balloon creatures, penguins from Sea World (or what WAS Sea World), firemen to meet and boots to try on, Wizard of Oz characters to meet and take photos with. So much to do!!! Tracy's favorite was the German Shepherd police dog....made us all wish for another Kita! Lots of food...especially kid food. And thanks to Marcy, we have bags full of candy on the dining room table. It was like Halloween again. We met a couple of other families we knew from the hospital. Joe and Marcy were absolutely wonderful...we could tell that all of the United employees love this event and eagerly volunteer their evening for us. We are so grateful to so many people.
But there is more....at 8:00 we all piled onto a 757 jet...the kids got window seats of course. We flew low (about 3000 ft.) for about an hour. Cedar Point (an amusement park) was all lit up just for us to fly over as well as Jacobs Field and the new Browns stadium. Joe, being the salesman that he is, got Adam and Megan and Mom (I couldn't resist tagging along) into the cockpit to meet the pilot and crew. Adam was in awe...all those dials...he can't wait to tell Uncle Rich! We were flying over downtown Cleveland just then so we saw the stadium from the cockpit. That was definitely the highlight of the evening. We got home about 10:00, tired but happy. What a special evening for the kids and what a great bunch of people. Thanks so much United Airlines and Make a Wish!! You do make kids dreams come true.!! And as we've experienced before, you make it special for the entire family, not just the ill child which is so very important, especially for the sibs who also need to feel special.
Thanks again Joe and Marcy!
Monday, February 05, 2001 at 06:50 PM (CST)
Today’s clinic visit was all good news. I feel as if the big, dark cloud hanging over our heads for the past 13 months is finally beginning to lift. Maybe, just maybe, Adam really is going to grow up a normal, healthy boy! The best news is that now that Adam is past the one-year mark, his chance of relapse is very slim, per Dr. Nieder. This is EXCELLENT news!!! And his graft is holding strong. (i.e. His body is accepting Megan’s cells very well)
Blood cultures were drawn (without the Broviac, Adam gets poked now but is a very good sport about it) as usual but with additional drawn for the immune studies we’ve been awaiting anxiously for. We won’t know for a couple of weeks what the results are. The chimerism (fish for Y) test, we will know the results of later this week. This test tells us, how many out of 250 cells, are Megan’s cells and if any stray “Adam cells” have survived. We hope not! Blood counts were good…about the same as last visit.
I asked when we’d no longer need to be concerned about chronic GVHD. Dr. Nieder said that they used to think that after five years, graft vs. host disease (GVHD) would burn itself out. Now they know that this is not really true. GVH can appear anytime in the patient’s life. So, that means that Adam may also be at risk for long-term GVH. However, the fact that he only had acute GVH (within the 1st 100 days) is a good sign. But, anytime his system is stressed in any way, he may exhibit some symptoms, which can be as mild as skin irritation to as serious as liver, heart or lung damage or a scleroderma type skin affect (& misc. other frightful things). But, so far, that’s not happening…. So we won’t worry.
For now…. We will “Bloom where we are planted” as one of my cyber friend's says.
Patti
Sunday, January 28, 2001 at 12:04 AM (CST)
Check out the "Many faces of Adam" on the photo page.
Those of us who have cancer kids will recognize the "many faces". I refer back to these to remind myself of how far we've come. Yes, these are only outward signs but they are what we see daily and they are a snapshot view for those around us to see.
The first shot was taken two days before Adam was admitted for high dose chemo and transplant. The innocence says it all!
The second shot thankfully is the Adam we saw for a very short period of time. The puffy cheeks and fullness are a result of steroids to combat graft vs. host disease. This picture was taken when Adam was at his highest dose. By mid-summer he was tapered off the steroids. The dark hair and eyebrows are from the cyclosporine, the immunosuppressant that also controls graft vs. host and helps the new bone marrow graft.
The third picture is a view of a very healthy looking Adam. This was taken when he was almost off the cyclosporine but as you can see...he's looking more like the Adam we see now.
Another update will be coming shortly after Adam's early Feb. clinic appt.
Patti
Wednesday, January 03, 2001 at 10:51 AM (CST)
Happy New Year!
Here it is January 3rd and I'm just getting around to updating Adam's website. I guess that's a good sign that we are busy doing normal stuff these days.
I'm feeling good about closing the last chapter on the year 2000. We are hopeful that 2001 will bring happier, less stressful, healthier times.
Adam is feeling very good right now. Cough and congestion are completely gone...just in time to head back to school where colds and flu are abundant. Hopefully, his immune system has recovered enough to fight these bugs.
Our clinic visit on Feb. 5th will include Adam's annual EKG and Echo to monitor for any changes to his heart as a result of the high dose chemo he received. His immune studies will be done in March assuming he doesn't come down with another infection in the meantime. The immune studies are what we are curious to see. They will show us just how well his immune system is functioning and which cell lines need further improvement. It will tell us exactly how well his body can combat infections, among other things. Hopefully, all will look good, though we've been reminded that with a T-cell depleted transplant, his system is going to be more sluggish than other BMT'ers.
Off to tackle some of my New Year's resolutions! Patti
Friday, December 22, 2000 at 10:51 PM (CST)
Adam's doing great!!! Very excited for Santa's arrival. Has more energy than earlier this week and beginning to sound less congested.
No signs of chickenpox.
We are tentatively planning to attend 5:00 church service on Christmas Eve. We'll sit in the back, maybe even the coat area and Adam must wear a mask. Last year, I'm not sure if any of us even made it to a service. This year WILL be different!
Please remember in your prayers a friend of ours who was just admitted to the hospital to begin 5 days of chemo for lung malignancies. This has been sudden and shocking news to her and her family.
Happy Holidays to all our friends and family.
Monday, December 18, 2000 at 10:16 PM (CST)
Day T+354
Hi to all! And thanks for all the thoughts and prayers....obviously it helped... WE ARE HOME (and none too soon!!!)
After a whirlwind evening and late night x-rays and multiple doctors we have a reason for the sudden fever. Adam has pneumonia which was diagnosed quickly and he began antibiotics for last night already. Today he had a CT scan of his sinuses which also have infection so they're being treated also. So far no other cultures have tested positive and it'll be another week until we know what his chickenpox titer is (they do these tests once a week early on Sunday). We were discharged, to our delight though we must be extra cautious for a while. No school or public places. We have a followup clinic appt. on the 26th so will know more by then when we can return to a normal routine.
Adam was feeling much better by midday...still quite congested (and not eating as usual) but energetic and happy. We got home about 8:00 p.m. but had to scramble to get meds filled before the drugstore closed and get Adam a bath and food (his milkshake supplement) and both kids off to bed.
Thank you again everyone for your prayers and patience in waiting for an update. We truly appreciate not having to answer the phone when life becomes so chaotic. I briefly debated whether to even send out an update as we headed out the door last night and decided that I should. Many of you have been on the journey with us for so long and have come to trust (I hope) that I will keep you informed and up-to-date as soon as I possibly can.
Fondly...Patti
Saturday, December 16, 2000 at 11:48 PM (CST)
It's late on a Saturday night...home from Tracy's company Christmas party. Can't sleep...so I'll update Adam's website.
Adam's has been very congested and has had a cough for about a week now. His ear was hurting the other night so I thought for sure we were heading for a temperature and infection and hospital visit etc. but by morning the earache was gone.
Adam has been exposed to the chickenpox though we don't know whether he will actually get the virus. Another boy on the bus was contagious last Friday. Needless to say, I am now Adam's transportation back and forth to school for a while. 14-21 days puts us right smack in the middle of the holidays so we may end up inpatient for another Christmas. Then again maybe not....this might just blow over and pass us on by. (Wish I could ask this little boy if he sneezed on my kid!!!) How different our perspective is on such events these days...if we must be in the hospital, that's OK, lets just not have it be anything serious.
Some GVHd has also reared its ugly head this past week...the skin rash slowly began to reappear on Adam's midsection. Steroid cream seems to be doing the job so hopefully we won't need to go back on the prednisone. I am also wondering if he may have some chronic GVH in his mouth which may be contributing to his eating difficulties. If his taste buds have been affected then that would explain his disinterest in food. We will have to see what Dr. Nieder says when we go back in the day after Christmas.
Not much new to report...as we approach our one year mark. We have so much to be grateful for considering where we were one year ago at this time. I will update again....hopefully before Christmas. Am working on updating the photos also.
Patti
Thursday, November 30, 2000 at 07:54 AM (CST)
Day T+335 - Revised
Adam's chimerism studies (how many of Megan's donor cells he has) were completed today. According to the results, he has lost some (a small percentage) of Megan's cells. This most likely means nothing at all or could mean a multitude of other things going on...the worst being donor failure (rejection) or relapse. Vicki, our nurse practioner, whom we spoke with tonight said the neither she nor Dr. Nieder were concerned. Adam is not exhibiting any symptoms of things going wrong. However, it would be nice to be at 100% or close to it and to not be losing cells!. We didn't ask but would anticipate that another study will be done in the near future.
Regarding Adam's overall health....he's doing very well. Still has nasal congestion from a cold a couple of weeks ago. Also has some enlarged lymph nodes on his neck which the pediatrician checked on Monday when he went in to get a second "booster" flu shot. She felt them and said they'd been there for awhile....possibly GVH related. (seems to be the standard response to any symptoms these days). It also could be left over from the cold virus.
Adam's transplant mate, Brandt, passed away on Tuesday. He was only two years old and had spent a good part of his life fighting neurobastoma (rapidly spreading nerve cell cancer).Please remember Brandt's parents and two brothers in your prayers.
Parents are not supposed to bury their children!
PBS
Wednesday, November 29, 2000 at 10:09 PM (CST)
Day T+335
Adam's chimerism studies (how many of Megan's donor cells he has) were completed today. According to the results, he has lost some (a small percentage) of Megan's cells. This most likely means nothing at all or could mean a multitude of other things going on...the worst being donor failure (rejection) or relapse. Vicki, our nurse practioner, whom we spoke with tonight said the neither she nor Dr. Nieder were concerned. Adam is not exhibiting any symptoms of things going wrong. However, it would be nice to be at 100% or close to it and to not be losing cells!. We didn't ask but would anticipate that another study will be done in the near future.
Regarding Adam's overall health....he's doing very well. Still has nasal congestion from a cold a couple of weeks ago. Also has some enlarged lymph nodes on his neck which the pediatrician checked on Monday when he went in to get a second "booster" flu shot. She felt them and said they'd been there for awhile....possibly GVH related. (seems to be the standard response to any symptoms these days). It also could be left over from the cold virus.
Not much else to update. PBS
Tuesday, November 21, 2000 at 08:13 AM (CST)
A quick update. Adam had his clinic appointment yesterday. Blood counts looked great!!! Chimerism test (fish for the Y) is being done again. Will have results next week sometime. Hopefully, 100% Megan's cells.
Uneventful visit....Adam needs to get an additional booster of the flu shot which we will do next Monday.
We discussed the ongoing nutritional issues. Dr. Nieder wants us to explore some protein drinks. Adam has grown in height since last year at this time which is excellent as many kids have growth problems as a result of chemotherapy drugs.
Nothing else new to report. Looking forward to our visit to my Mom's for Thanksgiving. Hope everyone has a safe and Happy Thanksgiving.-----Patti
Sunday, November 19, 2000 at 11:31 AM (CST)
Saturday, 11/18/00 Day T+324
Hi to all.
This must be quick as we are getting ready to go out to dinner with Tracy's family.
Adam spent the good part of last Saturday (11/11) in Rainbow's emergency getting IVIG (I think) and being monitored for a high temp. He spiked a temp upon waking and Tracy was told to bring him in immediately. By Sunday, he was on the mend and Monday returned to school. Just another reminder that we aren't out of the woods just yet. Lots of sniffly kids in his kindergarten class this week. I dread this winter season!
While Adam and Tracy were "visiting" Rainbow, Megan and I were in Philadelphia visiting my college friend, Lisa. We were also able to see my brother Mark and wife LeAnne in southern PA. We flew in and out of Baltimore/Washington airport. We enjoyed the weekend away...just the two of us. I was able to relax a little better than during my trip to Calif. I knew I could be home in hours if need be from Philly or Baltimore.
While in Philly we were able to meet a listmate friend of mine, Lisa and her daughter Lauren. It was wonderful to finally meet after emailing each other since early spring. Lisa's son Stephen received an umbilical cord transplant (at Duke University) a few months before Adam's transplant. Stephen also had MDS that transformed to leukemia but because there was no bone marrow match early on, he needed to go through many cycles of chemo. He is still unable to attend school or be around a lot of people due to his slow to recover immune systme. We wanted to meet Stephen but couldn't coordinate the time to fit it in.
Must go....cheers for a Happy Thanksgiving for all. We have MUCH to be thankful for!!!
Thursday, October 26, 2000 at 04:29 PM (CDT)
Day T+ 301
Hi to all. I meant to update after our clinic appointment on Monday and got busy doing "just stuff". It's a great feeling to putter around with day-to-day chores and projects without endless pills and fluids to worry about!
Adam's clinic appointment went great. All of his blood counts increased. White cells are at 4.5, red at 11.9 and platelets 200. The red cells and platelets are now in the low range of normal. Adam looks healthy too and seems to feel less tired. No weight gain so we will continue supplementing his milk.
Adam still has various restrictions, one being that he still cannot be around construction due to potential molds and fungus that can be stirred up from between walls and under carpets. Don't know if it's just a sign of the times or the area we live in but it seems everyone is doing some sort of renovations....of course, Adam's friends included. We were hoping that he could play at a new school friends house tomorrow. ... guess they will have to play here. We also cannot get the carpets cleaned or do any indoor painting yet.
Both Megan and Adam got flu shots yesterday and Tracy and I will also, when they are available. We all had to get them last year also. After all that Adam has been through I was a little surprised but comforted by the fact that he doesn't remember much of the pain from this past year. He put up quite a fuss when getting poked! And this is the same boy who had to get daily neupogen shots for 3 weeks last year!
Adam continues to enjoy school. I help out in his class each week so I am able to get a snapshot view of how he's doing. Gladly, he's just like any other kindergartner...cute as can be...but boy are they busy little people. God Bless Ms. DeFranco's patience!
Thanks to all who have signed our guestbook. Adam & Megan always like to check for new notes. Though this is Adam's journal, I like to know that friends and family are following along with us. EVERYONE has been so supportive and we are thankful.
Patti
http://www.pilink.com/ok/adamsmith/index.htm
Thursday, October 19, 2000 at 08:45 AM (CDT)
Day T+ 293 October 18, 2000
One year ago today was when our new journey began. It was the day Adam was diagnosed with leukemia (though we didn't know yet just how aggressive his leukemia was and that a bone marrow transplant would be necessary). It was also the day that Tracy had just started his new position at Foseco to which he had recently been promoted to. And it was also the last day that I went to work at Actron as a human resource generalist and a part-time generalist for Audiopack Sound Systems. (Talk about no two-week notice....not even time to pack up my desk. It was months later before I returned to gather my personal items).
It was the beginning of a different journey through our lives....maybe a more difficult journey...it does seem that way. But also, and journey that required strength and resilience of all four of us. Tracy and I have learned to lean on each other when the going gets rough, Megan (who took a back seat at times it seemed) had to adjust to not having Mommy around most of the time and Daddy only during the week. She never got to see Adam (except through a window) from mid-November until he was discharged on Jan. 28th. And she went through two days of pain and uncomfortableness to give her brother the gift of life....her bone marrow stem cells that would replace his own cancerous cells. She gave willingly and eagerly, understanding to the best of her 9 year old mind, that her bone marrow may not be enough to save him. And she worried about that. But, we reassured her that what she had done for her brother was the best that ANYONE in the world could have done. She was his best match.
Adam probably matured the most of all of us (giving up his pacifier...FINALLY....in May matured him at least 3 years!...how did we ever let him keep it past the age of two!!) Adam learned to endure pain, a lot of pain, pain that he to this day doesn't really understand why he had. He had to experience strange new procedures, machines, lots of new people...mostly adults. But through it all, he grew. He is now a more independent little boy, feels secure to leave Mom or Dad's side to go off to school or Sunday school. He will even chat with adults he doesn't know well. Yes, some of the things he would have developed regardless of his illness, but I still believe he grew up tremendously this past year.....maybe I shouldn't call him my little boy anymore.
So, how did Adam get leukemia? We still don't know the answer to that. Exposure to Benzene has been linked to leukemia but I don't know how or when he could have come in contact with Benzene. Lawn pesticides are another possibility. No one has made a direct correlation but there are many knowledgeable people who feel that lawn chemicals do cause certain cancers. I guess it's possible he played in someone's chemically treated lawn and then digested the chemicals or they seeped through his skin. Maybe he has a genetic malfunction that caused some of his blood cells to become defective and begin to multiply. I don't suppose we will ever know. One thing I continue to fear is that he will come in contact with the same chemical or whatever it was again and he will again be fighting leukemia or some other cancer. I guess that's a cancer kid's Mom's worry. How can we not worry!
Oct. 18, 1999 unfolded as any other Monday morning. Megan, Adam and I had returned home from a visit to my brother Mark and his wife LeAnne's in PA. Adam had been fighting a cough and low grade fever since the Wednesday before. I switched cough syrups over the weekend since the Dimetap didn't seem to be helping. I inadvertently began to give him double the dose of Robitussin. (1 teaspoon instead of a half teaspoon). We had even commented over the weekend how pale Adam looked and how tired he seemed.
Tracy left early, before the rest of us got up, so I hadn't really had a chance to tell him that Adam was still not feeling well...but even still, his symptoms were vague. Tiredness, cough, low grade fever, paleness. Nothing to be overly concerned about. After Megan left for school, Adam and I headed out to Carol's, Adam's baby-sitter. The minute we walked into Carol's house and I mentioned that Adam still had his cough, she took a look at him and said, "Oh, Patti...he looks terrible. Look how white he is. He has no color in his lips" It seemed that I just needed someone to agree and justify my worries. And Carol did just that. She suggested that maybe I was giving him too much cough syrup when I told her I had switched. I didn't think so, but checked the bottle anyway. And sure enough...Carol was right. (THANK YOU CAROL!) However, I knew the doctor's office wasn't open yet. So, I left Adam with Carol, to run into work, pick up some things to work on at home and to call and make Adam a doctors appt.. Well, driving in to work, I began to panic. I berated myself for even leaving him at Carol's. The minute I got to my office I had the pediatrician paged. Due to the description of his symptoms and the fact that I had given him too much Robitussin, she told me to take him immediately to the emergency room.
Tracy, not knowing what all had evolved, got a call from me that I was on my way to Fairview emergency. I think he still didn't think it was anything serious. We both thought that Adam would just need fluids and I could handle that. Plus, Megan had a dermatologist appt. that afternoon which Tracy would now need to take her to. At Fairview, they saw us in emergency pretty quickly and began with the routine blood test. Within ten minutes, the doctor returned and they began Adam on fluids and hooked him up to oxygen. I still remained calm. (Little did I know then, that the initial blood work was already typed as acute leukemia. There were cancer cells in his peripheral blood.) A little later, the doctor told me that they were going to admit Adam because he was anemic and they would need to run test to find out why. We also needed to wait for Dr. D. our pediatrician to come to the hospital. She was in an all-day seminar.
So, Adam and I went upstairs to a room. I again called and updated Tracy but we decided to have him still take Megan to the doctor and then come over around 4:00, about when Dr. D. would come to the hospital. As the afternoon progressed and other doctors came in to check on Adam....I began to sense that he possibly had something more serious. I recall making another call to Tracy telling him of my concern. I knew from the doctors conversations that Adam's spleen was enlarged, (a typical symptom leukemia) and that he had a significant heart murmur (which was a result of his heart having to pump so hard to push his few remaining red blood cells out to his body. The heart murmur disappeared once he was transfused with red blood)
Tracy came to Fairview around 4:00 and Dr. D. arrived about 4:30. The next 10 minutes will remain in my mind forever. Dr. D. followed by two other doctors came in, closed the door and told us that they were 95% sure that Adam had leukemia. Dr. D. recommended that he be transported to University Hospitals Rainbow Babies and Childrens. The ambulance transport was already on its way. We, of course, agreed that some where other than Fairview made sense but I don't think we thought any further than that. We trusted Dr. D's judgment.
We both made a couple of phone calls...to whom, I'm not real sure. But, it wasn't long before the ambulance arrived. I road up front in the ambulance and Tracy followed behind in the car.
The rest of the evening is pretty much a blur. I reviewed Adam's history with Kelly who was our all-time favorite resident and I believe Adam got a red blood transfusions. We also must have made tentative plans regarding sleeping arrangements and Megan's school etc. (My Mom selflessly gave up her own schedule and literally moved up to our house to keep the house running and care for Megan for close to 4 months. We are so thankful!)
As the next few days went by, the seriousness of Adam's illness began to unfold. It was not typical childhood leukemia that he had. He had myeloid dysplastic syndrome that had turned into acute myeloid leukemia. Neither was curable by chemotherapy or radiation alone. Adam needed a transplant.
So, here we are 12 mos. later., 293 days out from Adam's transplant. I must say, there were some pretty awful and scary times but Adam seems healthy and happy today. And we must be grateful. We must continue to cherish the yesterdays, live for today, and hope for the tomorrows! God bless us all!
Patti
Wednesday, October 18, 2000 at 02:23 PM (CDT)
Day T+ 293
One year ago today was when our new journey began. It was the day Adam was diagnosed with leukemia (though we didn't know yet just how aggressive his leukemia was and that a bone marrow transplant would be necessary). It was also the day that Tracy had just started his new position at Foseco to which he had recently been promoted to. And it was also the last day that I went to work at Actron as a human resource generalist and a part-time generalist for Audiopack Sound Systems. (Talk about no two-week notice....not even time to pack up my desk. It was months later before I returned to gather my personal items).
It was the beginning of a different journey through our lives....maybe a more difficult journey...it does seem that way. But also, and journey that required strength and resilience of all four of us. Tracy and I have learned to lean on each other when the going gets rough, Megan (who took a back seat at times it seemed) had to adjust to not having Mommy around most of the time and Daddy only during the week. She never got to see Adam (except through a window) from mid-November until he was discharged on Jan. 28th. And she went through two days of pain and uncomfortableness to give her brother the gift of life....her bone marrow stem cells that would replace his own cancerous cells. She gave willingly and eagerly, understanding to the best of her 9 year old mind, that her bone marrow may not be enough to save him. And she worried about that. But, we reassured her that what she had done for her brother was the best that ANYONE in the world could have done. She was his best match.
Adam probably matured the most of all of us (giving up his pacifier...FINALLY....in May matured him at least 3 years!...how did we ever let him keep it past the age of two!!) Adam learned to endure pain, a lot of pain, pain that he to this day doesn't really understand why he had. He had to experience strange new procedures, machines, lots of new people...mostly adults. But through it all, he grew. He is now a more independent little boy, feels secure to leave Mom or Dad's side to go off to school or Sunday school. He will even chat with adults he doesn't know well. Yes, some of the things he would have developed regardless of his illness, but I still believe he grew up tremendously this past year.....maybe I shouldn't call him my little boy anymore.
So, how did Adam get leukemia? We still don't know the answer to that. Exposure to Benzene has been linked to leukemia but I don't know how or when he could have come in contact with Benzene. Lawn pesticides are another possibility. No one has made a direct correlation but there are many knowledgeable people who feel that lawn chemicals do cause certain cancers. I guess it's possible he played in someone's chemically treated lawn and then digested the chemicals or they seeped through his skin. Maybe he has a genetic malfunction that caused some of his blood cells to become defective and begin to multiply. I don't suppose we will ever know. One thing I continue to fear is that he will come in contact with the same chemical or whatever it was again and he will again be fighting leukemia or some other cancer. I guess that's a cancer kid's Mom's worry. How can we not worry!
Oct. 18, 1999 unfolded as any other Monday morning. Megan, Adam and I had returned home from a visit to my brother Mark and his wife LeAnne's in PA. Adam had been fighting a cough and low grade fever since the Wednesday before. I switched cough syrups over the weekend since the Dimetap didn't seem to be helping. I inadvertently began to give him double the dose of Robitussin. (1 teaspoon instead of a half teaspoon). We had even commented over the weekend how pale Adam looked and how tired he seemed.
Tracy left early, before the rest of us got up, so I hadn't really had a chance to tell him that Adam was still not feeling well...but even still, his symptoms were vague. Tiredness, cough, low grade fever, paleness. Nothing to be overly concerned about. After Megan left for school, Adam and I headed out to Carol's, Adam's baby-sitter. The minute we walked into Carol's house and I mentioned that Adam still had his cough, she took a look at him and said, "Oh, Patti...he looks terrible. Look how white he is. He has no color in his lips" It seemed that I just needed someone to agree and justify my worries. And Carol did just that. She suggested that maybe I was giving him too much cough syrup when I told her I had switched. I didn't think so, but checked the bottle anyway. And sure enough...Carol was right. (THANK YOU CAROL!) However, I knew the doctor's office wasn't open yet. So, I left Adam with Carol, to run into work, pick up some things to work on at home and to call and make Adam a doctors appt.. Well, driving in to work, I began to panic. I berated myself for even leaving him at Carol's. The minute I got to my office I had the pediatrician paged. Due to the description of his symptoms and the fact that I had given him too much Robitussin, she told me to take him immediately to the emergency room.
Tracy, not knowing what all had evolved, got a call from me that I was on my way to Fairview emergency. I think he still didn't think it was anything serious. We both thought that Adam would just need fluids and I could handle that. Plus, Megan had a dermatologist appt. that afternoon which Tracy would now need to take her to. At Fairview, they saw us in emergency pretty quickly and began with the routine blood test. Within ten minutes, the doctor returned and they began Adam on fluids and hooked him up to oxygen. I still remained calm. (Little did I know then, that the initial blood work was already typed as acute leukemia. There were cancer cells in his peripheral blood.) A little later, the doctor told me that they were going to admit Adam because he was anemic and they would need to run test to find out why. We also needed to wait for Dr. D. our pediatrician to come to the hospital. She was in an all-day seminar.
So, Adam and I went upstairs to a room. I again called and updated Tracy but we decided to have him still take Megan to the doctor and then come over around 4:00, about when Dr. D. would come to the hospital. As the afternoon progressed and other doctors came in to check on Adam....I began to sense that he possibly had something more serious. I recall making another call to Tracy telling him of my concern. I knew from the doctors conversations that Adam's spleen was enlarged, (a typical symptom leukemia) and that he had a significant heart murmur (which was a result of his heart having to pump so hard to push his few remaining red blood cells out to his body. The heart murmur disappeared once he was transfused with red blood)
Tracy came to Fairview around 4:00 and Dr. D. arrived about 4:30. The next 10 minutes will remain in my mind forever. Dr. D. followed by two other doctors came in, closed the door and told us that they were 95% sure that Adam had leukemia. Dr. D. recommended that he be transported to University Hospitals Rainbow Babies and Childrens. The ambulance transport was already on its way. We, of course, agreed that some where other than Fairview made sense but I don't think we thought any further than that. We trusted Dr. D's judgment.
We both made a couple of phone calls...to whom, I'm not real sure. But, it wasn't long before the ambulance arrived. I road up front in the ambulance and Tracy followed behind in the car.
The rest of the evening is pretty much a blur. I reviewed Adam's history with Kelly who was our all-time favorite resident and I believe Adam got a red blood transfusions. We also must have made tentative plans regarding sleeping arrangements and Megan's school etc. (My Mom selflessly gave up her own schedule and literally moved up to our house to keep the house running and care for Megan for close to 4 months. We are so thankful!)
As the next few days went by, the seriousness of Adam's illness began to unfold. It was not typical childhood leukemia that he had. He had myeloid dysplastic syndrome that had turned into acute myeloid leukemia. Neither was curable by chemotherapy or radiation alone. Adam needed a transplant.
So, here we are 12 mos. later., 293 days out from Adam's transplant. I must say, there were some pretty awful and scary times but Adam seems healthy and happy today. And we must be grateful. We must continue to cherish the yesterdays, live for today, and hope for the tomorrows! God bless us all!
Patti
Monday, October 02, 2000 at 12:44 PM (CDT)
Day T+277 (9 months post transplant)
249 out of 250 cells are female!!!!
That means that out of 250 blood cells tested, 249 came back as Megan's cells. That is great news. It means the engraftment continues to hold strong and Megan's cells are dominating.
Vicki said "Not to worry" about the one male cell, so we won't. She said it doesn't mean a thing.
The "Fish for the Y" test (technically known as chimerism testing) will be redone at 12 months post transplant as well as heart and lung testing to be sure no chemo damage has occured. Further cell testing will be done 3 months after Adam is off all immunosuppression drugs which he should be off of soon.
Cheers...Patti
Wednesday, September 27, 2000 at 03:03 PM (CDT)
Day T+272
Adam’s clinic appointment on Monday was uneventful, which is the way we like them. His red count has climbed back up to where it had been previously and is approaching the low end of normal. His white count continues to be low (3.5). Nurse Practioner, Vicki still feels that the white cells are just going to take longer. Because Megan’s stem cells were t-cell depleted in order to reduce the degree of graft vs. host disease Adam would experience, his white count is going to take longer to bounce back. So, we must continue to dodge the germs, as his immune function is still very low.
Adam had additional blood drawn to do the “Fish for the Y” test. (I love it!!!!this sophisticated medical terminology) This is the test where they look at the chromosome makeup of a sample of blood cells. We are hoping that they will find 100% female (XX) cells (i.e. Megan’s cells) and 0% male (XY) cells (Adam’s potentially leukemic cells). We should have results later this week. If all is going well, and the chemotherapies and the BMT did their job, then there will never be XY cells. Even if Adam’s bone marrow tries to make it’s own cells, we hope that Megan’s cells are strong enough to “knock his off’ as being foreign and safeguard against the multiplication of potentially defective cells.
Adam continues to enjoy school, his teachers and new friends. He has adjusted amazingly well and has come out of his shell a lot in the last 6 months. Afternoon kindergarten is working well for us. He sleeps until 9:00 or 9:30, eats his breakfast, plays a bit, and then eats lunch and off to school. Adam’s also playing soccer, which is good exercise for him (our main goal in signing him up.) He has all he can do to run a just keep up with his teammates and has yet to reach the ball first. Fortunately, he’s too young and inexperienced at soccer to realize you must actually kick the ball to be a good player!. Today, he had a friend from his soccer team come over to play. So nice to see.
It finally seems that we are settling into some sort of normalcy. The medications are dwindling, our clinic appointments are further apart and overall, Adam and Life seem to be returning to normal. The memories will always be there and I’m sure we will always have our guard up, ready to fight any potential battles. It’ll be a long time before a common cold and its symptoms don’t cause us worry. Life still seems much too fragile to me!
Patti
Monday, September 18, 2000 at 01:00 PM (CDT)
Day T + 263
It's been awhile since I've updated. Glad to say that it's because we are busy living normal lives.
Adam likes kindergarten and has adjusted just fine. Even rides the bus!!! His teacher, Miss DeFranco and I email frequently so that I know who's sick in the class etc. So far, so good....not even a sniffly nose. Adam has kindergarten in the afternoon which is working out nicely...he sleeps in, eats breakfast and then we work hard at eating a good lunch. Eating still is not on Adam's list of "fun things to do"
We have another clinic appointment next Monday so I will update more then. Check out the new photos in the photo album.
Patti
Monday, August 28, 2000 at 09:57 PM (CDT)
Day T+242
Another clinic day today. Adam's counts have remained unchanged despite my increased efforts to tank him up with nutritious foods. Dr. Nieder has stopped the gancylovir entirely to see if that will help boost Adam's counts. The flip side of being off the gancyclivir is that he loses some protection against his CMV from flaring up. (This is a dormant virus that if reactivated can be dangerous to BMT kids.) Dr. Nieder, Vicki and I again discussed nutrition issues and I pushed for the appt. with a nutritionist.
Adam fought off a cold that he started to come down with last Thursday...it tis the season again! He managed to kick it's butt because he was feeling fine by Saturday. Not much new to report. School starts Wednesday for both kids.
Upon leaving our clinic appt. today we saw baby Brandt and his Mom and Dad. He was transplanted about 1 month before Adam and was inpatient most of Adam's hospital stay. Sadly, Brandt has relapsed. As Dad said...they are running out of options. There's a trial drug that Brandt may be eligible for but must take place at the center doing the trial, which is out of state...can't recall where. Parents haven't made a decision what to do, nor are they sure yet whether he is actually eligible. Meanwhile, additional chemo has not shrunk his tumors....he now has spots in his brain).Our visit ended on a sad note. I don't know the actual stats for BMT's for the entire year at Rainbow... but there has been a < 50% survival rate since we entered treatment. We knew going in that the statistics are not good...we are reminded often.
Our children should not be fighting these diseases! Patti
Thursday, August 17, 2000 at 09:17 PM (CDT)
Day T+241
We are back from Hilton Head as of Sunday...in enough time to see Andy and Sue Claar who were in Cleveland for Andy's highschool reunion. Sue ran in the Anchorage Leukemia Society Marathon in honor of Adam this past spring. We have a special bond with the Claar family...Sue's running, Connie's interest and conscientous emailing during & after transplant. The entire Claar family has been tremendous support to us.
We had a WONDERFUL, relaxing time in Hilton Head. Tracy got three days of golf in, I read alot and enjoyed some solitary beach time and Megan and Adam swam in the pool as often as they liked, which was pretty often. We stayed in a large house with plenty of space for private time but enjoyed the time with my Mom, 2 brothers and sister and their families. The kids spent lots of time with their cousins.
Adam seemed to feel great and managed to keep from sunburning. We covered him multiple times each day with sunblock which worked well. Skin GVHd is always a worry.Adam was able to see the beach one evening when we had a family photo taken and to see his Uncle Rich fly a kite. He wanted to boogie board in the waves but we discouraged that idea.
Yesterday Adam had his vision tested and low and behold....he has 20/20 vision! No evidence of cataracts as a result of the prednisone which I was quite glad to hear. And no eyeglasses!
Waiting to see the nutritionist. In the meantime, we have been supplementing his milk with Carnation instant breakfast. So far, he hasn't even noticed the taste. His meds are being tapered.....ever so slowly.
Our next clinic visit is on the 28th so I will update more after that.
Patti
Monday, July 31, 2000 at 10:07 PM (CDT)
Day T+214
Adam had a clinic appointment this morning. We are on the 4-week plan now so we don't return for next appt. until 8/28.
Adam's blood counts have not changed since our last visit 4 weeks ago. Thankfully, they haven't gone down. However, we'd like to see a continual climb uphill. So that news was a little worrisome. Dr. Nieder has reduced Adam's gancylovir (cytovene) to 1 pill in A.M. (250 mg.) instead of twice a day. The gancylovir is an immunosuppresive drug that keeps his CMV in check.(This virus he tested negative for back in Oct. but just prior to transplant tested positive). It is not a good thing to have resurface. However, by reducing the gancyclovir, it will give his marrow a better chance of getting stronger. So, here's hoping the counts look better in four weeks.
We will also be seeing a pediatric opthalmalogist to have Adam's vision checked. He seems to have problems focusing at times. Dr. Nieder didn't see any cataracts, which is good. So we will know more after our appt. with the eye doctor in a few weeks.
Otherwise, clinic went OK and Adam is happy to play and enjoy his 5 year old independence (the simple, carefree pleasures of being 5). So, on we go...each day something new to look forward to!.....Patti
Wednesday, July 26, 2000 at 10:10 PM (CDT)
Day T+209
Hi to all.
Adam continues to feel good. Still not eating well, though today was a good food day so maybe his appetite is increasing.
Tracy and I went to see the psychologist yesterday to discuss the results of Adam's testing. We were relieved that nothing major has surfaced. Academically, Adam is ready for kindergarten. He scored very well in numbers (he loves to play "add and takeaway"). His social skills and self help skills were low (functioning at closer to a 3 yr. old) which was no surprise. We kind of knew he was behind and then when he got sick that delayed him further. Both areas can be corrected in time. Adam's test results did show that he is at risk for short term memory problems, particularly visual memory (reading, seeing something on a blackboard and remembering what he saw) so he will need to be watched. Also noted was some hand tremors, which neither Tracy or I have noticed but could be a result of the cyclosporin as other kids have had similar hand tremors.
Overall, we felt it was a good evaluation and we can now make some decisions and move forward.
Patti
Friday, July 14, 2000 at 03:06 PM (CDT)
Day T+197
Not much new to report which is good news, of course. Adam is feeling and doing great. It is so NICE to see him doing normal "boy" things. Almost daily, either Nick or TJ (neighbor buddies) comes over to play. They play lots of Nintendo but will also play their version of baseball out in the front yard. The best is when Dad goes out and pitches for them!
Adam's clinic visits have also been uneventful which is the way I like them. His blood counts continue to hover below normal....but this is to be expected as he is still on immunosuppressive drugs to keep his graft vs. host disease under control. But we continue to taper little by little. Adam has lost his prednisone pudginess and looks more like himself but continues to drop his weight which is of some concern. We have been instructed to go back on the ck (cancer kid) diet.."eat whatever I want whenever I want". Kind of goes against the "parenting grain"!!
Adam has completed his neuropsych testing and we should have preliminary results by the end of the month. We will get final results by mid August. At this point, unless something shows up that is detrimental to schooling for this fall, and as long as his blood counts continue on the upward climb...we will move forward with kindergarten. Until Adam's reimmunized (the high dose chemo wiped out all of his immunities), I will be very nervous about the chicken pox which can be quite serious for these kids. I don't think diphtheria, tetanus or polio he is as likely to come in contact with. But gradeschool's seem to be breeding grounds for chickenpox. We won't even begin to discuss the start of immunizations until the beginning of 2001.
Nothing else new to report. We are all enjoying the laid-back summer schedule and are looking forward to a Blaes family get-together at Hilton Head in August.
Please continue to remember Adam and all the other kids fighting these cancers. It is horribly sad to hear of another child losing the battle...some who were doing so well only a short time ago. I am learning to embrace today, cherish yesterday and pray for a tomorrow. And in between...thank God for our dear little boy!!
Patti...Mom to Megan, "The Donor" (9 yrs.) & Adam (5 yrs.) Dx MDS/AML 10/20/99
BMT 12/30/99. Web address: www.caringbridge.com/ok/adamsmith
Saturday, July 01, 2000 at 09:00 PM (CDT)
Day T+184 6 Months Post Transplant!
Greetings to all,
We just returned from a restful and a much needed escape to the "country life." The kids and I left Monday to stay with my sister Katie and her family while our new "Y2K heating and cooling system" was installed. The job was completed at 9:30 Friday evening after Tracy's insistence that it MUST be done before the weekend so that we could return home. (Due to potential molds and dust in the air during the installation, Adam had to be out of the house.) We now have a new Trane furnace and air conditioner, April air humidity control AND an air filtration system. Yeah! (Dorothy and David...you should see the new, spacious basement we now have!)
Our week at Katie's (and hubby Terry and kids Erin, who was away at camp, and Ryan and Colin) was so nice. They live on a Christmas tree farm about 10 miles southeast of Bowling Green, OH. They have a beautiful sunny, airy timberframe home that Terry has built and continues to add new niceties to all the time. They also have a pond, with diving board for hot afternoon swimming. Colin, Ryan and Megan enjoyed swimming while Adam and I supervised from the porch. Adam did get to cast his fishing pole a few times with the boys. We played croquet and some "Adam tennis" which wore both Aunt Katie and Mom out. We also went to 3 of the boys ball games at which Katie and I laughed when the foul balls landed in a corn field. Now THAT would never happen here in Rocky River...corn field...where??? Ahh yes, the country life can be so refreshing. And it was such a nice escape...a time to forget, yet a time to reflect on the last six months and how far we've come.
Adam is doing so well at this point in time. We are breathing easier but must always be on guard. It's so easy to slip up or not notice that something we all accept as safe may not be for an immunocompromised person. The window boxes that I had planted outside Adam's and our bedroom windows looked so nice but unfortunately were breeding grounds for molds. And the carpet that has consistently gotten damp during a hard rain is now a cause for concern. Once we get the endless basement "stuff" back to its home in the furnace room, we will look into the carpet, damp basement problem. In the meantime, the basement is off limits for Adam.
Megan is feeling much better now that her thyroid meds were doubled. She's into her second session of swimming lessons this coming week and is considering joining the swim team for the balance of the summer.
Tracy was able to get in some golf while we were gone and I as usual enjoyed reading and relaxing with Katie and kids. Terry was busy pruning his Christmas trees all week....I experienced another segment of the Christmas tree business other than the spirited Christmas season. It's a lot more work that just picking out a tree, cutting it, standing it straight, and decorating it!
Happy 4th to everyone....Patti
Monday, June 19, 2000 at 06:41 PM (CDT)
A quick note for now. I will update more completely later this evening or tomorrow. Adam's clinic visit today went just fine. A nervous Mom! His blood counts were actually very good. Dr. Nieder ran blood work to check for active Epstein Barr (momo) which we will get the results of tomorrow. I am relieved...mono I can deal with...cancer cells I cannot!!
Patti
Saturday, June 17, 2000 at 11:11 AM (CDT)
Day T+170
Hi to all,
Cheers and good luck to our friend Sue Claar who will be starting the Leukemia Society Marathon in Anchorage in a few minutes. We will be thinking of Sue all afternoon from noon to about 5:00 our time. According to Sue, around mile 25 is going to be the hardest part...uphill. Please remember Sue this afternoon, as well as all the other runners contributing towards the cure for leukemia and lymphoma.
On the homefront here, along with our excitement for Sue and the other runners, we are swallowing some worry. Adam has been feeling a little "off" these last few days. He's tired, not eating well (which drives me nuts!) and he's pale. Could be the mono that Megan has had, could be nothing at all. We scheduled a clinic visit Monday morning to check blood counts and look for Epstein Barr (mono) antibodies. Monday can't come soon enough for me.
We've begun the summer sporting activities. Megan's in swimming lessons and Adam started T-ball and soccer. Adam was so excited for both of his activities. It's nice to see him doing "boy things" with his peers.
It's now past noon...Sue has begun!!! GO SUE GO!!! Patti
Monday, June 12, 2000 at 09:53 PM (CDT)
6/12/2000 Transplant + 165 Days
Adam's last couple of weeks have gone very well. Our clinic visit today was uneventful (despite the fact that we were there for 4 hours). Now that Adam doesn't have his central lines anymore we have to wait in line to have blood drawn just like the rest of the folks. He calls it "getting his shots" and is braver now than at first.
His counts were about what we had hoped for: white blood count is 2.7, red blood counts is 3.05 and platelets are 145,000. All still low but acceptable. We will continue to taper prednisone down (looks like about 1 more month). No signs of any GVHD at this point. His cyclosporine (which is the immunosuppressant drug that also helps to prevent GVH ) remains at a high level....120 mg. per day so it looks like another couple of months before he is off of it. The cyclosporine is the drug that is giving Adam the full head of dark hair....and the monkey hair everywhere else.
Adam's been playing outside a bit more lately (with lots of sunblock). He really enjoys playing "baseball" (his idea of baseball). Tracy or I pitches, he hits (very well, I might add) and then we breathlessly jog to retrieve the ball as he races thru all bases and yells home run. Never tires of this!
Megan is still "limping" along with her mono. The hypothyroid med has yet to really make a difference. I think the two combined really wiped her out. Now that school's out she's able to sleep and take it easy a little more.Within the next month, she should begin to feel better. Dr. Nieder cautioned that Adam could still catch the mono so we need to be watchful as it could become serious if he does come down with it. So many things to worry about. (And to think that two years ago, I thought headlice was going to put me "over the edge"...little did I know...I'd be careening full speed....on rollerblades without my glasses....thank god I haven't fallen yet!
Please check out the pictures in the webpage. Not the best...but I'm working on getting some better ones. Now that we've given up the pacifier, I can't bear to look at all the pictures when it was in his mouth...much less post one on his webpage. So that has eliminated a good chunk of pictures.
On a sad note...please remember our friend Josh's family in your prayers. Josh passed away two weeks ago. He relapsed after his BMT. His mother Yvonna and I got to be good friends while at Rainbow and Josh and Adam played together. Josh was 4 1/2 and had his BMT just after Adam had his. Sadly...all three of the BMT's that followed Adam's were not successful. All 3 of the children are now Angels with wings.
Please sign our guestbook if you haven't already. Both kids like to read it.
Thanks...Patti
Saturday, June 03, 2000 at 05:22 PM (CDT)
6/2/2000 Day T+155
Greetings…Over a week has gone by since my last update. We've had a busy week. Between the two kids we were running back and forth to appointments(& it's not even summer yet!)
Megan has been diagnosed with a slow thyroid and has now started medication, which should kick in within the next few weeks. In August we will need to see a pediatric endocrinologist to identify what has caused this to happen. Our pediatrician, who has been around a long time, said Megan is only her second patient to have this. Leave it to us, to again come up with a fairly uncommon disease. And the doctor assured me more than once that there is absolutely nothing wrong with Megan's blood counts and, "no being a bone marrow donor could not have caused this". We are just relieved that it is not serious and she will be feeling better soon. Meanwhile, she has missed quite a bit of school (luckily it's the end of the school year) between the slow thyroid and the Epstein Barr virus. No wonder she's so tired and pale.
Adam has done great this week. My only concern at the moment is trying to increase his appetite. (I think the chemo is still affecting his taste buds because he says things don't taste right). As his prednisone level is tapered so has his appetite. In a moment of frustration, I did mention the possibility of the feeding tube being put back in. That startled him into eating that time! We are still letting him eat whatever he wants whenever he wants just to get him to eat. Which as we all parents know, goes against the grain. All the good eating habits we've tried to instill in both kids has been shot. Not to mention the inequity in how this rule is enforced. Megan must still eat what is on her plate to get her treat. Meanwhile, Adam is eating bacon, cereal and his ongoing favorite….butter toast.
We also began the neuropsychological testing on Adam. Actually, I attended the first appointment alone. He will be tested in July (for 6-10 hours…whew). According to the psychologist, these children (cancer kids) are being monitored very closely, as there is a high incidence of neurological problems. The medical establishment is not sure why this is…the chemo, radiation (which Adam didn't have), other illnesses that they came down with while immunocompromised. The plan for Adam right now is, hopefully, to find out that he is right on track for a 5-year-old. If so, then this testing will serve as a baseline for future testing. (which will be done each year). When he enters kindergarten, he will enter as a child "otherwise health impaired". This along with the testing will allow us to get the help that he may need. I feel very good about this process…that we will have everything in place to respond if Adam does show difficulty in any area (memory, cognitive development, behavior etc.).
Megan has also seen a psychologist twice (originally my concern was because she was so tired and just "not herself") Turns out, the psychologist said she has handled the disruption in her life very well and is dealing with Adam's illness appropriate for a 9 year old . We don't need to see the psychologist in the future unless we feel a need.
So, all in all….it's been a good week. Enjoy the new website and please sign Adam's guestbook. We love to read the messages. Pictures for the website are still coming.
Patti
PS. CaringBridge is doing some maitenance on the websites this weekend so you may not be able to access Adam's website. Just in case, I will send this out as an email.
5/22/2000 Day T+144
Hi to all of our friends and family. Well, I finally did it...I've created a web page for Adam. Hope you all like it. Feeel free to critique.
Adam's clinic visit was terrific today. His platelet count which has hovered between 70 and 90 thousand since BMT has jumped to 145,000!!! Yep, one hundred forty-five thousand. Looks like we need to go to Disney more often!!! An increasing platelet count is also an indication that Adam's graft has a strong hold. (secondary graft failure can occur if platelets show a downward trend). Red and white cells remained stable. Dr. Nieder reminded me that Adam's blood counts will not be normal until at least one year after being off all immunosuppressant drugs which he won't complete the taper on for a few more months.
We also discussed other concerns and have agreed to begin neurological testing in the hopes that Adam will be able and ready to attend kindergarten this fall. So, we continue to move forward.
The downside of the day which actually was a relief to Tracy and I is that Megan, who has not been feeling well, has tested positive for the Epstein Barr virus. She had not been feeling well (tired, cold all the time, pale, headaches, stomachaches)even before we left for Disney. While there, it became even more evident that she just wasn't herself. Of course Tracy and I were extremely concerned that the symptoms mirrored Adam's symptoms 6 months ago. (No, this could not happen to us again!) So, we are all relieved that it is nothing serious. However, it does create a new challenge...how to keep Adam from getting the virus. My understanding is that it could be serious if Adam comes down with Epstein Barr but I'm waiting to hear back from Dr. Nieder to see just how serious and what precautions we need to take. Megan needs to rest, eat well and take Tylenol as needed. Her blood counts looked good so she should be able to knock the virus pretty quickly.
Enough for tonight. I forgot to mention... Adam's clinic visits are now 3 weeks apart...we are making progress!! I will try to update before then (time to play with my new web pate!) and will attempt to put previous entries into the history. Patti
Sunday, May 28, 2000 at 12:01 PM (CDT)
5/21/2000 T+143
Hi to all our Friends and Family,
As you can see, I didn't do any emailing "live" while at Disney. Tracy took
his laptop but unfortunately forgot the adapter to plug it in. The battery
would not have lasted long. To be honest....I didn't have much time anyway.
The kids kept us on the go.
We had beautiful weather...not a drop of rain. (jealous Clevelanders??) In
the 90's though so we wilted a few days. Sunblock 45 worked wonders. Adam's
GVH stayed under control and Megan and I also didn't burn. Tracy (Mr. "I
Don't Need Sunblock" burned of course).
Words cannot describe how wonderful Give Kids The World resort was. So much
care and consideration for these kids...it was truly amazing. Everything
was
designed with kids in mind...down to the wheelchair accessible swimming
pool
and Jacuzzi bathtub off the kids bedroom. The sundae shop was open all day,
the dining hall for breakfast and dinner (all provided at no cost!).
Merry-go-round, game room, computer play room, train rides and trolley that
would take us wherever we wanted to go. Mickey and Minnie came to the
castle
for photos and autographs as well as John Stamos (Jessie from Full
House.....Breathtaking for Megan or any other girl between 9 & 12!)
The kids swam in the pool lots. Dad AND Mom (the pool was heated just to my
liking....warm!) did too. Adam learned to put his head under water (holding
his nose and wearing his neon pink goggles...hand-me-downs from Megan. He's
pretty clueless to the unmanliness of the color pink.) By the end of the
week, he was jumping by himself into the shallow water and paddling under
water to Tracy or I. This is progress!!! Megan also has shown some real
improvement in her swimming endurance...maybe ready for swim team this
summer.
Met many other families with special journeys of their own. Some sad and
some
hopeful. All of us trying to bring joy to children who have lost some of
their childhood innocence. Some, like Adam, who have yet to understand the
impact their lives and struggles have made on those around them. They
continue to grow and fill us with hope that there is a future out there for
them. I found an instant bonding to other Mom's, especially those with
children with bald little heads....we have traveled the same path. But
still,
my flood of emotions remains in check...I must still be numb as this is
very
unlike me. The floodgates will open someday but for now we are all still
focused on the here and now.....a survival mode I am sure. Many people have
asked, "How do you do it". The answer that continually replays in my head
is
that "I have no choice". I don't think or reflect much on how we got to
where
we are or where we are going. We live day to day. And we've learned to love
the quick, easy smile of our kids and are content, knowing that they are
happy for the moment.
After all that being said....I do consciously realize that we have one very
spoiled little boy and a young lady trying to figure out where she fits
into
the new mold. It's VERY hard to be tough with either one of them but I can
see that the time is coming when we must toughen up. I will put it off
until
summer though.
Back to Disney....we did Magic Kingdom on Monday....more crowded than we
had
anticipated. We were provided with a stroller for Adam which expedited
walking but maneuvering around the many other strollers was a real trip!!!
Tuesday we did Universal and Wed. we toured MGM. Thursday we had planned to
spend that later part of the day at Epcot but Megan didn't feel well (too
much sun and swimming) so we stayed only an hour. I was disappointed as
that
was the park I had most looked forward to. All in all, we had a wonderful
time, have lots of pictures (& autographs). Came home exhausted and in need
of some healthy food.
Adam has a clinic visit tomorrow so I will most likely be updating again
shortly. Please remember some of our friends in your prayers. 4 yr. old
Ariel
who needs her transplant ASAP but looks like she won't be able to because
of
a serious fungal infection that has settled in her lungs. And for Stephen
who
is now home recovering from a serious disease post transplant that has
caused
possible permanent damage to his lungs. Also, remember in your prayers the
families of Leslie, Jordyn and Ricky who became God's Angels recently and
for
all the other young children fighting to beat their diseases.
For Now...Patti
5/1/2000 T+123
Hi to all. It has been awhile since I've updated. Feels good to be actively
participating in normal day to day activities. The new bikes have been
getting a decent workout though molds on the ground, and windy days are
still
a tremendous worry.
Adam's central lines have been removed and healing nicely. He should be
ready
for a swimming pool by the time we go to Disney. (only 2 more weeks!). He
had
the unpleasant experience of having blood drawn the old fashioned way this
morning and he was not a happy camper. Tough guy wanted no
band-aide....still
wants no part of bandaides, gum, or stickers.
Our clinic visit today went very well. Almost too well it seems. Of the 3
other families whose children have the same dx as Adam, only Adam and one
other girl are feeling well these days. Pretty sad to experience the
reality
of this disease. So many either do not survive or have lasting effects from
the BMT or the chemotherapy drugs. It seems that their lives are saved but
at
what cost? At this point, I try not to ponder these thoughts too much as we
still must go on.....
Dr. Nieder continues to wean the cyclosporin and prednisone but very
slowly.
So far, liver & kidney results remain good. And the skin GvHD has yet to
resurface. We have been given the OK to do just about anything while at
Disney. I was concerned about flying (recirculated air) but Dr. Nieder
seems
OK about it. In fact, Adam no longer needs to wear a mask, except when we
visit the hospital. Though we must be cautious around crowds at Disney, we
have no particular restrictions. In fact, we can begin to introduce fresh
fruit and veggies into his diet as long as Mom or Dad washes and prepares
them. No fruit and salad bar at restaurants. That solves the food concerns
I
had while at Disney.
Other than a continuing allergy-like stuffy nose, Adam is doing great. I
think we all are breathing a little easier now though I don't think the
worry
of relapse will ever end. Nor will we ever return to the blissful
innocence
of the days prior to diagnosis. I can't help but feel sad for what we have
lost. The future, though never a clear crystal ball, seems so fuzzy for us
now. But, we must be grateful that Adam has survived and hope that he will
continue to do so well.
Patti
4/18/2000 T+109
Hi!
Adam is doing great! If it weren't for all of his body hair and chipmunk
cheeks,you'd never know what he has been through. Overall, he has been
feeling well the last two weeks.
Adam reported to Vicki that he can now have his broviacs (central lines)
removed now that he has given up his pacifier for good. (Yeah!!) What a big
step for him. We should have taken it away years ago when it would have been
easier. So it looks like surgery will be scheduled next week to remove the
lines. I am hesitant but see the logic in removing them....just seems so
soon.
We are now tapering his meds down, but very slowly as we don't want the
graft
vs host to show its ugly symptoms. Dr. Nieder took a sample from Adam's
mouth
yesterday to check for possible oral GVH. So for now, the cyclosporin and
prednisone are being reduced very slowly. Blood counts did not change much
which is to be expected. It is just going to take a long time for his immune
system to be normal. We are just so lucky he has not come down with any
infections, particularly fungal (from molds) infections that are hard to
treat and get rid of. Windy days and construction sites are bad news so we
stay inside when the wind is blowing.
Not much else new to report. Today, I'm unpacking the kids summer clothes in
preparation for our Disney trip. I have a feeling Adam, with all his weight
gain, will have outgrown a lot of the new 5's that he would have been
wearing
this summer. He looks so healthy with his extra pounds. Now when I look back
at pictures of him last summer, he does look thin. Ah yes...what we didn't
know then that we know now!
We've done a little bike riding though the weather hasn't been great. The
tagalong on the back of my bike is great. Adam can pedal when he wants or
rest when he needs to. It will be excellent exercise for this summer.
I've been busy doing some serious "dust" cleaning in the house. Since Adam's
allergy symptoms may be dust related, I've decided to concentrate my
cleaning
efforts on removing dust and the remains of Kita hair. Yes, those of you who
only know me from work....I do know how to houseclean!!! I have a good
reason
to clean now!
I will send another email next week if the surgery moves forward that
quickly.
Patti
3/22/2000 T+114
CYTOGENETICS RESULTS FINALLY IN. ALL 250 CELLS LOOKED AT WERE XX (IE.
MEGAN'S
FEMALE CELLS) NO XY CELLS WERE DETECTED.
REGARDS....FROM ONE VERY HAPPY FAMILY!4/6
Patti
3/20/2000 T+81
Dear Friends,
Another week...another visit to clinic (or Bowell as Adam calls
it....."Mom...there are two hospitals I go to:one is Rainbow and the other
is
Bowell (the bldg where Ireland Cancer Center is located) where I get my IV
and play Nintendo. Well...I was at another hospital (Fairview) where they
poked me in the arm and they had Play Station and I didn't like it as well")
Ah yes...the worries of children!
We finished our last of the IVIG so we don't go back to Bowell until April
3.
No cytogenetic results were back yet. Looks like Wed. afternoon until we
hear
whether Adam's blood is still all Megan's. Waiting again!!! I will email as
soon as we hear.
Platelets dropped slightly again. I haven't been able to get a good read on
what Dr. Nieder is thinking. He doesn't think Adam's going to relapse....nor
reject Megan's graft as red and white cells are level (not dropping... but
not increasing either) Could still be a virus he's fighting. I breathe a
little easier when I get some assurance that the 2R's aren't
happening...Rejec
tion or Relapse. With his platelets still so low, we must continue to be
careful that he doesn't bleed. (ie...no jumping on the furniture etc.)
Adam's weight is up to 39 pounds so to us he looks like a little chunk. Hair
continues to come in dark and thick. He continues to "crave" bacon and
buttered toast (6 pieces at a sitting). Needless to say....his cholesterol
is
rather high. Unfortunately, since he's really not supposed to eat fresh
fruits and veggies (fungal infections) it's hard to feed him healthy. I was
sneaking some washed off carrots and a pealed apple once in a awhile until I
read about a man who was just over 100 days post transplant and doing fine
until he got a fungal infection and died within 3 days. No more fresh fruit
and veggies!!
It is soooo hard not to let our guard down. We've got to be soo careful!
Whew...enough of that...."mom worries" creep in at times. On a brighter
note...WE ARE GOING TO DISNEY WORLD. Thanks to two of our dear friends,
Kathi
Super and Anne Ellis who contacted Make A Wish Foundation for us. (Anne even
scoped out the park for us!!) We will be flying to Disney in May and will be
staying in their special resort called Give Kids the World (for children
with
life threatening illnesses). We will have a car to travel around in and
will
fly home 5 days later. And all of this will not cost us a dime. The kids are
very excited. Adam has never been to Disney but Megan has very vivid
memories
of it and she was only 3 1/2 at the time.
I must sign off as it is getting late. I finally spent some time organizing
my email file cabinet and straightening up Adam's Journal folder. I've also
switched everyone's addresses over to the home computer. Hopefully, I
haven't
skipped over anyone's address.
Patti
3/13/2000 T+74
Greetings from Adam and family,
All is well here for today. Clinic visit was longer than usual...6 hours of
IV instead of 4 hours. Every 4 weeks Adam has a 2 hour pentamadine infusion
which protects him from some virus (I'm losing track of what does what). So
it made for a long day but we always find plenty to do. (there's always a
Batman movie!) Lately, Adam has enjoyed more coloring workbooks, and
especially dot -to-dots. He's able to count up to 100 now! Now if we could
just get rid of the darn pacifier!!!!
Dr. Nieder decided to send in blood for another cytogenetic test. Adam's
blood counts had stopped climbing and the platelet count had dropped for 4
weeks in a row. Just precautionary...it was decided to make sure that none
of
Adam's blood cells have snuck their way back into his marrow. If all goes
well, by next Tues., we should have the results back showing that all blood
cells are XX chromosone (ie all Megan's cells). We were quite nervous after
a
conversation that I had with Vicki last Wed. She said Adam's counts were "of
concern but not alarming". Well, tell a cancer kid's Mom that you're worried
about something and she'll carry the entire worry for you....the sky's the
limit!!! I was panicked last week but have calmed since...especially since
all his counts were up today. The reality is....we will always be worrying
!!! Must learn to keep our worry in perspective.
I have spent some time "lurking" reading the emails from the parents on the
pediatric-oncology (PED-ONC) site. (lurking is reading but not emailing) I
have since begun emailing to Bob and Jane Nau, who's 16 year old daughter,
Rebecca is being treated for the exact same syndrome that turned into AML
cancer that Adam had. Even had her bone marrow transplant just two days
before Adam! Needless to say, we have lots of notes to compare. Becca is
being treated at Duke. I am so glad to have found someone else who has a
child with the same thing as Adam.
Not much else new to share. Adam continues to grow more hair....and lots of
it. He really looks healthy. Still tires easily but overall, we think he's
doing great!
Thanks for your continuing interest.
Patti
3/7/2000 T+68
Greetings from Adam's house!
Clinic visist went fine yesterday. I spent some time with Cheryl, our social
worker discussing some of Adam's developmental issues. He's emotionally
delayed which I think I was prepared to hear. Physically, he's lost some
ground (motor skills) but can be corrected with warm weather and exercise.
(Papa bought a tag-a-long for him to ride attached to my bike. The only
problems is that my bike is so old that it doesn't have the proper
attachment
bar so it looks like I may need to get a new bike. In the meantime, we've
hooked it up to Megan's bike....and I'm getting one major thigh workout!)
Back to ....where was ? School this fall is still a maybe but we will
continue to move ahead as if it's going to happen. It's hard at times to
realize how fragile his immune system still is....he looks good and feels
good. We must continue to remind ourselves that caution has helped us get to
where we are today and we must continue to be cautious.
His counts didn't change much with the exception of platelets which for the
last 3 weeks have dropped slightly, each week. I will discuss with Vicki
today when she calls with results of his cyclosporin level.
We had a nice B-day party on Saturday with most of the cousins. Adam came
down with a slight cold on Wed. so the party was "pending" but he never got
a
fever and even learned how to blow his nose!! Hooray! Now we have partially
used tissues displayed throughout the living room! Ah well.
Much to do today so enough for now. Hope everyone (here in OH) is enjoying
this nice weather. We may need to take a bike ride this afternoon.
Patti
2/28/2000 T+60 Adam’s 5th Birthday
Adam is 5 today! Hard to believe.The last few months have been a total blur.
We are planning a family party on Saturday. We spent most of the day at
clinic so Adam decided to celebrate on Saturday. Megan couldn't wait to give
him her present so he now has his own "Blue's Clues thinking chair". Cool
dude with his Barnie PJ's, sitting in his thinking chair, playing Smash
Mario. A 90's babe for sure!!
Clinic visit today. Feeding tube came out....yea!!! After I gave him the
morning dose of cyclosporin of course. However, looks like GVH is showing up
in his mouth. Not good in that he's already on a pretty good dose of
steroids
right now. Feeding tube will have to go back in if he stops eating due to
mouth sores. But for now, we are free of the tube and the cyclosporin went
down ok this pm (no picnics on the floor this time DB!) Other than the GVH,
the rest of clinic visit was uneventful.
When we arrived home, Megan had beat us home by about 20 min. and was busily
decorating windows, doorways, tv, chandelier etc. with crepe paper. The
"party girl" hard at work. She designed a really cute card for Adam with
stickers, (Thanks Amanda!) words mispelled...a treasure to keep!
Adam's birthday dinner....Pizza Hut of course! Only this time we actually
were able to go out to the hut.
Adam's eyebrows are really growing in. He looks different even to us. Much
thicker and darker (thanks to the cyclosporin). He's also got lots of peach
fuzz facial hair. Still wears his jammies almost 24 hours a day (don't sweat
the small stuff right?) and looked rather dorky out riding his bike this
weekend with jammies white socks and brown suede school shoes. Oh to be 4
and
not a care in the world!
Enough for now. I've logged on to a pediatric oncology email list where
parents email each other with problems/concerns. Very interesting...as many
addresses are from UK etc. There is so much to learn about this crummy
disease.
Until next time...Patti
2/22/2000 T+54
Greetings......almost to 60 days post transplant...hard to believe!! Next
Monday(Day T+60) is Adam's 5th birthday.
Clinic visit yesterday was just one of those "ho-hum" kind of visits. Seems
like we didn't make any progress this past week. Blood counts were down just
a bit....his immune system may be fighting a virus (and winning so far as he
has no symptoms of being sick). Blood pressure is high, most probably due to
the steroids which Dr. Nieder has decided to leave him on until Day T+91
since his skin GVH was pretty significant. May need to take a blood pressure
med if high pressure continues. And feeding tube is still in. He actually
lost some weight. He seems to be eating well to Tracy and I but it could
just
be that his body needs additional nutrition to fight the GVH. At least with
the feeding tube, we can continue to give him the cyclosporin in liquid form
via the tube. Once the tube is out, it's back to the swallowing again.
All in all, we are moving along. Could be much much worse at this point. We
have been fortunate that we haven't had additional hospital stays with all
of
these nasty flu and cold bugs going around.
Adam's feeling good....has lots of energy. His hair is just starting to come
in. Looks to be pretty dark which is what the cyclosporin will do. His
eyebrows (or should I say eyebrow) are coming in dark and full....across the
nose also. As Vicki describes it "the cyclosporin look"
He's busily working on dot-to-dot books and making potholders (I'm running
out of wall space to hang them all so we may be taking orders soon.) Unlike
Megan who figits, sings etc., Adam concentrates on what he's working on.
It's kinda cute that when he needs to erase the mistake, it must be erased
completely. Whereas Megan just scribbles right over top of the
mistake....drives me crazy! How different kids can be. Megan will chatter
away to anyone who'll listen. Adam will clam up and look to me to talk for
him. Ah well, the joys of being a parent...what motivates one may not work
for the other. I'm glad they get along so well....Megan's the mother hen and
Adam's the little chickadee that needs protection. Whatever......
More later,
Patti
2/15/2000 T+47
Greetings from the Smiths,
We are all doing great here. Yesterday's clinic visit went great! We had
Megan along since school was cancelled due to snow. She enjoyed
participating
in our Monday excursion.
Adam's weight is up....37 lbs! He was 32 lbs. after 1st round of chemo. Dr.
Nieder was pleased ....he now has the steroid tummy. Vicki gave Adam's food
diary to a dietician to look at. I can't imagine that bacon, macaroni and
cheese, Pringles and Mountain Dew are going to earn Adam a gold star for
healthy food consumption. Dr. Nieder said the fact that he was eating
variety
was more important right now than how healthy the foods are. The feeding
tube
stays in for at least one more week for proper nutritional intake.
Steroid meds were reduced a bit. Must be reduced slowly to alleviate
withdrawal symptoms as well as monitoring the skin GVH. So far, his skin
looks very good. The rash is almost completely gone. Effects of high dose
chemo still evident though. Dark skin on fingers, toes and elbows.This will
also clear up eventually.
Waiting for Vicki to call today with liver test results and CMV results.
During the 1st 90 days post transplant the 3 areas where GVH most commonly
will exhibit itself is the skin, the liver, and the digestive system. So
far,
it has been only skin for Adam. The CMV is a virus that Adam got during his
hospitalization for a high fever (interestingly no one seems to know how he
got it. Our hunch is he received platelets that came from a donor who was
CMV
positive) Doesn't matter though how he got it, we must move forward and deal
with it. He will constantly need to be tested to see if his CMV is active so
that he can be treated for it before it causes a GVH reaction.
Answers to some questions:
1. How can Adam play in the snow with his feeding tube? He's unhooked during
the day. He's on the pump 8-10 hours at night. (We will need to repaint the
stairwell walls and ceiling by the time I get done hauling the pole up and
down the steps! Ah well, they needed painted anyway.)
2. What is Adam's prognosis since the "fish for the Y" test? And is he
cancer
free? We learned very early on that all tests are only as good as the
technology that is available today. When the docs say there were no
detectibel xy cells or cancer cells what that means to us is that "as
clearly
as the naked eye can see under the best microscope available, no cancer
cells
are detectible." Does that mean that there are no minute cancer cells still
floating around in his body? No, but based on the present data, his blood
looks good. The prognosis for Adam's type of cancer is 60% survival.
However, we have beaten the transplant odds! Can't even describe in words
how wonderful that success is. In a cardplayers words, "we are playing with
an entirely different deck of cards than we were only 5 mos. ago. And any
ace
we acquire, we are thankful for!"
3. How long for side effects to appear? Acute GVH will show up within the
1st
90 days. (mainly the skin, liver and digestive system). After 90 days, GVH
becomes chronic and will generally exhibit itself in liver, heart, lungs,
metabolism, joints and muscles,dry eyes and mucous membranes and hairloss or
bald spots. Usually though, if the 1st 90 days went well with few GVH
problems, chronic, if there is any, won't be too bad.
We are all breathing a little easier these days, though must be careful not
to let our guard down. Things have gone so much better than we had ever
expected. We all pray that Adam's progress continues uphill and that he will
be out riding his big wheel as soon as the warm weather gets here. He's such
a good sport though and really enjoys the time at home (with me, I like to
think).
Off to play.
Patti
2/9/2000 T+41
Cytogenetic reports came back excellent! Every cell was Megan's!!! Megan
truly is our shining starl!
Patti
2/8/2000 T+40
Greetings.....it's been awhile since I emailed but things are going so well,
it almost seems "normal" (ie. I have my usual loooong "to do" list and not
enough hours in the day).
Clinic visit yesterday went very well. We were anticipating that the feeding
tube would be removed but Dr. Nieder wants it to stay in for another week or
two. Though Adam is eating (not the right things....of course), he's not
consuming near enough calories to sustain his increased need. As his body
fights GVH, he needs additional calories than he normally would.
The GVH rash cleared up almost within 24-36 hours after starting the
steroids
last week. He now officially has acute graft vs. host which means he's
exhibiting a pretty strong skin rejections which has occurred within the 1st
90 days of transplant. GVH within the 1st 90 days have some significance
though I don't understand all the details. What I do understand is that it
must be aggressively controlled so that he doesn't develop other more severe
GVH....it can quickly get out of hand. It's all rather confusing...in that
acute GVH during the 1st 90 days doesn't necessarily mean he will have
chronic GVH. This whole discussion came about when I expressed my concern
over the long term use of steroids. The response I got was that within the
1st 90 days steroids are the most effective drug to control acute GVH. I'm
hoping he's not on steroids very long.
Adam has also had intermittent diarrhea and continuing knee pain which could
also be GVH though Dr. Nieder would not say for sure. Since he's on the
steroids, it's hard to tell how'd he'd be without.
Still are waiting for cytogenetic results from lab which will show whether
there are any cancer cells in Adam's system. Should hear something within
the
week. This, of course has us on pins and needles.
As for Adam himself...we can definitely tell he's feeling better. Much more
himself. He enjoys the two of us being home together. He's showing a
consistent desire to work on what he calls his homework. Mrs. Engel, his
preschool teacher, has been sending "homework" home for him and we get right
on it when it arrives. He also likes to do dot-to-dot books. Numbers are his
thing!! He and Megan played a bit in the snow over the weekend. It was good
to see him out playing.
About all for now. On to work on Valentine cards.
Patti
1/31/2000 T+32
Greetings.....now that our lives have settled down somewhat, I'm just
beginning to realize how much time has flown by. Oct - Dec. are just a blur.
And Adam's 5th birthday is just around the corner (2/28) and still wearing
pull-ups and using his pacifier. The pacifier will be history when we think
he's feeling well enough to adjust to another change. Like I've said before,
his worries are so different from ours!
Made our weekly visit to clinic today for IVIG and none to soon. The rash
had
gotten worse over the weekend, even with the cream that Dr. Nieder
prescribed
on Friday. We had returned to clinic on Friday because I was becoming
concerned about how the rash was progressing. Vicki said that it is
definitely graft vs. host (GVH), a grade 2 rash. (Scale 1-4 with 4 being the
worst). By last evening the rash was everywhere except his shins...even the
bottoms of his feet. He was most uncomfortable last night and didn't sleep
well.
Today, Dr. Nieder decided that steroids (prednisone) would be necessary as
the rash was now a grade 3. Adam will start out on 30 mg. a day and see how
that goes. The good thing about the steroids is he will start eating and
have
a good appetite...not necessarily the right foods. He still eats very
little...a couple of cookies, a sucker, maybe a few chips. Forget the
vegetables and fruit. Once he starts eating again, the feeding tube will
come
out. Steroids however, aren't good to take long term and lower resistance to
infections. They will also make him balloon out and gain weight. Puffy
cheeks
and neck.
The rest of our clinic visit was uneventful. Counts looked
good....continuing
to grow his own platelets. White count was still at 2.8 but Vicki said that
it'll climb very slowly now that he isn't getting neupogen. In fact, the
entire 1st year we should expect to see white count vary quite a bit as his
immune system will be quite immature. So it looks like we need to hold off
on
our visits to preschool and Carol's house to see Adam's friends. It's just
not worth the risk of another hospital stay. To be honest...I'm enjoying the
time alone with Adam...just the two of us all day long. I have all the time
in the world for him now!
Off to read for a bit...this has been a non-stop day. I enjoy my quiet time
at the end of the day. Megan and Tracy have gone to bed, Adam's watching a
video (with all the couch cushions strewn across the floor....something
about
alligators in the water....whatever.) I think I'll just sit quietly in the
corner and read and maybe the alligators will get tired too.
Thanks again for all the emails. As I said last week...if you don't hear
from
us, everything is going as anticipated.
Patti
1/27/2000 T+28
Greetings....not much new to report. That's good!.
The skin rash is getting progressively worse....it's now creeping up to his
face and head. May need to make a trip in to clinic tomorrow. Vicki said to
give him benedryl to see if that helps....doesn't seem to other than makes
him sleepy. Also is running a temp again. Ah well...day by day. The bags are
packed if necessary.
Blood counts looked good this morning. He's now making his own platelets and
enough that we didn't need to go in. White count did drop to 3.2 (as we
expected) but should climb back up soon.
Before I close, I wanted to let all of you know that a family friend of
ours,
Sue Claar, will be sending out a letter to everyone on my email list. Sue,
who is the wife of one of Tracy's old swimmers from his coaching days, is
raising money for leukemia research. She will be running in the Leukemia
Society's marathon in Anchorage and has asked to run in honor of Adam. We,
as
a family wish to support Sue in this huge endeavor and hope that additional
research funding will improve long term survival for all leukemia patients.
There are many families struggling with this disease just as we are.
Goodnight...Patti
1/25/2000 T+26
Yes we are still functioning here....just busy. Feels great to be running my
own house again!!! I can even get up when I want....well not really, Megan
still has to make it to school on time and I still hear a beeping pump (damn
those pumps!) from Adam's room if I don't get up it time to turn off the
night feed. I will have dreams of beeping pumps for years to come!!
Yesterday's visit to clinic actually went very well. Mondays will be our
regular clinic visit for IVIG (Intravenous Immune Globulin). IVIG sustains
the immune system after a bone marrow transplant. The infusion of IVIG takes
3-4 hours. Adam is premedicated so he sleeps through most of it. He
tolerated
this dose well. No high blood pressure like last week.
Dr. Nieder and Vicki are pleased with his progress. The feeding tube is
working good and we will slowly increase the calorie intake as his stomach
will tolerate it. A couple of meds were deleted from his daily regime but
one
additional was added. We were able to stop the neupogen shots (YEAH!!!) as
his white count was up to 13.9. It will drop however, immediately to about
6.0 and continue to drop down to 2.0 or 3.0. The neupogen was giving him an
artificial white count. Now, as his counts climb, they will really be his
white cells.
Platelets are low which means we may need to go back Thurs. or Friday for
more. This should be the last time he will need platelets but I've said that
before.
The best news is that he's showing some mild graft vs. host. Sounds crazy
but
this is actually good. We want him to have some graft vs. host because that
will also give him graft vs. leukemia. If there are any remaining cancer
cells Megan's graft cells will attack and KILL. The important part of this
whole graft thing is that we want some graft vs host in a spot that can be
controlled so that it will help prevent a future relapse. He is exhibiting
graft vs. host on his skin, a rash on his stomach and legs which hasn't
bothered him a bit...doesn't itch or hurt. Guess it sounds a little sad to
think that we would want this but I'd rather have a skin ailment that can be
controlled than a relapse. A relapse would be horrible.
The tips of his fingers and around the lids of his eyes are also
discolored....almost looks like he's been playing in dirt and needs to wash
his hands. Vicki said that it's from the chemo and will clear up.
Nothing else new to pass along. I'm not sure if I will continue to email
daily, especially if everything is going fine. For sure I will send out an
update after Monday clinic appts. So if you hear nothing from us, it's most
likely good news.
I've attached a picture of Adam that was taken last Monday at the hospital.
Note the Teddy who goes everywhere with him.
Patti
1/23/2000 T+24
Greetings from Maplewood Ave.!
So nice to be home! It's been hectic catching up and adjusting to new
routines and schedules but we're getting there. Adam even went up to bed at
9:00 tonight.
The feeding tube has been the best things since.....hmmm since Pizza Hut in
a
bag. He really perked up today, a little more like his old self. All last
week he was tired and out of sorts. Today, he even ate a couple of popsicles
and a few bites of pizza (Pizza Hut of course).
For the time being, until he's feeling better, we've been syringing water
into his feeding tube also. It really would be much easier to just have Adam
gulp down a glass of water...but it's just one of those things (don't sweat
the small stuff). We pester him enough with new things, meds to take,
dressing to change, baths which are a major process, neupogen shots,
flushing
his 3 IV lines daily. At least we have a way to help him take in the proper
amt. of liquids. Plus, syringing the liquid cyclosporin down the feeding
tube
has been great.
Saturday night we had family movie night with our "pretend" fire in the
fireplace. I've been buying candles on sale. We set them on the hearth and
mantel, light them all and turn off the living room lights and we have our
version of a fire. And no mess to clean out of the fireplace.
Someone asked me if Adam is confined to the house and if we can have
visitors. Yes, he is at home unless we go to clinic and then he must wear a
mask (which he just hates). As long as the flu season continues, we will
stay
put at home. Visitors have to be limited. Megan's friends I usually check to
be sure they'aren't sick or anyone else in the family. As his counts
improve,
we may be able to venture out a bit, like to the library or mall during off
hours.
Another question was: how do all these kids who are missing school make it
up? Most have tutors and I would think that it would be somewhat up to the
parents to be sure they are keeping up with assignments. Thankfully, we
aren't missing critical school years. Tracy and I are aware that Adam may
need to delay kindergarten for another year. Another possibility, if his
immune system is doing well by fall, is to enroll him somewhere that will
have a small class....like where he was going to preschool. He would be
exposed to less illnesses. We'll have to see...though I'm sure kindergarten
signups are coming up soon.
Tomorrow is clinic day....literally (at least 6 hrs.). Monday's will be our
clinic day. We will have cyclosporin level checked, lab work to see if
platelets or red blood is needed and then his weekly IVIG infusion which
takes a few hours. He's premedicated and should sleep for awhile. If I'm
seeing a pattern....he'll feel pretty bad tomorrow night and Tuesday too.
Headaches, bone aches and blood pressure are what we need to watch for.
Weekly IVIG is to continue indefinately.
More tomorrow.
Patti
1/21/2000 T+22
Hi to all....Adam's been running a temp all day. 99.6 most of the early
hours
but creaped up to 101.6 at about 10:30 p.m. Megan & I were over at my friend
Barb's when Tracy called. Since we are supposed to take him to the hospital
when temp reaches 101, I left Megan to sleep over with Barb. Tracy & I
decided to hook him up to IV, hoping that fluids might bring it down. The
pessimist that I am, I have a feeling we will be back in the hospital
tomorrow. I can't believe that being dehydrated can cause a temp to go up
that much. As his temp is 100 now at 11:30, I'm hoping we can sleep here
tonight and head out tomorrow morning. No one else is sick here so who knows
what he picked up
Had a nice day. Adam & I played a bit. He really isn't himself
though..irritable and not feeling like himself. Feeding tube is really
bothering him.
Gotta go catch a few zzzzz's. Not sure what tomorrow will bring.
Patti
1/20/2000 T+21
Greetings....not one of our better days. I knew it wasn't going well when
Adam threw up his cyclosporin and the cereal I tried so hard to get him to
eat. By the time I got him (& me) cleaned up we were late for our 10:00
appt.
We arrived & were told that yes, we would be there awhile because Adam would
need IV fluids. We came prepared with videotapes and Nintendo games etc. We
were directed to our favorite room (we call it the helicopter room because
sometimes you can see the life flight land on the parking garage roof from
this room) . Well, not only was the VCR broken, the TV didn't work either.
Damn those techi toys!!! You'd think I'd have brought books to read to Adam.
I had a book for myself but now there was no chance I was going to get any
reading done.
Vicki & I talked about nutrition, while Adam was getting his fluids, and
opted for a feeding tube instead of the Hyperal IV nutrition. She said the
Hyperal is hard on the liver so it was quite obvious to me which one would
be
our choice. Adam was not at all happy that another feeding tube had to go
back in (a feeding tube is inserted down the nasal cavity into the stomach
and then the outside end is taped from his nose up behind his ear and then
taped onto his chest. I was thrilled to hear I could give him the liquid
cyclosporin via the feeding tube. Adam was happy about that also. I left the
clinc at 2:45 thinking that I would be syringing liquid nutrition down his
tube. Boy was I wrong.
No sooner had I gotten home....to a very chaotic house with bags and
suitcases still not unpacked than I got a call from a respiratory therapist
who would be delivering the IV pole and pump. I had no idea what he was
talking about. Then a nurse called to say she would be out in the evening to
show us how to hook up the nutrition. To put it mildly, I was a little
pissed. The control thing again!!!! I had absolutely no control over my
day...or Adam's for that matter. I spent the next hour setting up a
spreadsheet to keep track of Adam's meds and when they need to be taken etc.
and how many pills need to be broken down into gel tabs etc.
The "pump man" arrived just as we were sitting down to dinner (of course) to
give us his speach on how to operate the pump. I bit my tongue and
graciously
handed the machine operation chore over to Tracy and went in to feed the
kids.
After dinner there were 2 loads of laundry (from the mornings pill fiasco)
to
do. Then the nurse arrived and spent about 45 min. explaining how to mix the
feeding etc. After she left Adam's central lines had to be cleaned and
flushed and gel tabs to be filled and swallowed. Oh, and poor Megan got lost
in the chaos somewhere and was sent up for a bath at 9:00 which put her in
bed past her bedtime.
The day is winding down now...Tracy and Megan are in bed and Adam's busy
with
his gameboy. I will have to wake Tracy to help me get Adam and IV pole
upstairs. We need return to our old bedtime routine....Megan and Adam going
to bed at 9:00. Especially now, with food running for 10 hrs. each night.
Hopefully, we won't need this for long. And despite my complaining, it is
best for Adam. Being a picky eater before he got sick makes it highly
unlikely that he going to generate any appetite for healthy food now. And he
needs good nutrition to heal his little body. Plus, his stomach hasn't had
real food in it for over a month. So he doesn't even feel hungry or thirsty.
Now, the pressure is off, (somewhat) to get him to eat. Now I can let him
eat
what he wants and let him develop a desire to eat. Eating should be
something
fun....not having a Mommy breathing down your neck.
And tomorrow, is a true stay-at-home day. No trips to Clinic until Monday!.
Patti
1/19/2000 T+20
Greetings.
It is now 10:00 and Adam has his second wind. Looks like another late night
for Mom (and I'm all out of 2nd winds).
It was soooooo nice to be home. Megan went off happily to school and Adam &
I
headed to Clinic to have cyclosporin level checked (ya know....horse pill
med). And his level was high so we're off the hook for today.No cyclosporin
to swallow down today. However, I had to go back to giving daily neupogen
shots in Adam's thigh which didn't go over too well. Hopefully, we won't
need
neupogen much longer as white count continues to go up.
Didn't come home with the IV pole and nightly nutrition bag (hyperale)
though
now I wish we had. Vicki thought he might be able to eat and drink enough.
Adam ate only a few bites of pizza and a little popcorn. Unfortunately,
amidst my day unpacking etc. I didn't push fluids enough and now we have to
go back to Clinic tomorrow for IV fluids. I'm going to request the hyperale
so we know he's taking in enough fluids and nutrition. There's always the
threat of readmission hanging over our heads...so I don't feel the coast is
clear yet.
For those of you that I owe an email to, I'll try to in the next day or so.
Sue, I'm still working on that photo. What if I mail you a picture? Could it
be added to your letter? Connie, I plan to continue to email from home for a
while yet.
Off to watch Batman & Robin with Adam.
Patti
1/18/2000 T+19
WE ARE HOME!!!!!!!!!
Yahoo....we are home!! As of 7:30 tonight and what a day it was. Had a
reaction to IVIG drug (ran a temp and had high blood pressure) so it was
touch and go whether we would actually get discharged. But we did!!!
Must return to Clinic by 9:00 a.m. tomorrow but who cares....we are home.
Tracy and I marveled on the way home that we had been in the car 15 min.
almost the longest period of time we'd been together since Dec. 20th.
I'll write more later this evening.....just wanted to share our news with
everyone.
Patti
1/17/2000 T+18
It is now midnight and the little man is still going strong. Someone's red
blood that he received today must have been full of caffeine.....he's been a
busy guy all evening.
He did it!!! Thanks to Dianne, (my boss from Audiopack who also has a 4 year
old). We couldn't have gotten thru this event without your participation!.
Those of you who know Dianne know that she'll do whatever it takes even if
it
meant picnicking on the hallway floor of Rainbow 2. Where was the video
camera??? Dianne, Adam & I sat on the floor with multi flavors of sweet
tarts, certs, and a candycane spread out on a napkin. We each pinched our
noses and gulped our pop down.(Adam's 2 ounces of pop were also "spiked"
with
his very stinky smelling cyclosporin liquid. (I decided to try the liquid
until he can confidently swallow the pills he was swallowing so well
before).
After much coaxing and deal making, Adam managed to gulp it all down. We
then
proceeded to live up to our end of the deal. Dianne and I had to watch a
Pokemon video, without any "Mom talk". We agreed that we would totally
concentrate on movie watching with Adam. And I must say, Dianne cannot only
get excited about just Batman.....she's pretty excitable when it comes to
Pokemon too!!. Before the end of the movie, Adam was sharing a chair with
Dianne!.
What a relief....and the other daily pills went down with only minor gagging
today. This was a day of major accomplishment. And tomorrow AM we'll wake up
prepared for the next round. Dianne, after leaving tonight, drove around the
east side until she found a drugstore open that had sweet tarts so that
we'll
be well-stocked for morning. Give that girl a raise Jon!!!! Talk about
making
the sale AND following it thru to completion....she went the extra mile.
The blood in urine Dr. Nieder was not particularly concerned about. He felt
that it is just a late effect of the cytoxin and should clear up on its own
since Adam's white counts continue to rise (1.1 today!!!). So it looks like
we may be going home on Wed. As long as all meds remain at the level they
should be, now that we are on orals, we should be OK. From the sounds of how
bad this flu bug is, I don't think we'll be leaving the house for a while.
We
have Christmas toys to play with...it will be so nice to be together again.
Adam has fallen asleep so I better do the same. Doctors rounds seem to come
much to early for us night owls.
Patti
1/17/2000 T+18 Early a.m.
Greetings to all,
I went home for the weekend so I didn't do any emailing. Megan had a
sleepover at Elmwood Park Sat. night so I had some time to myself. The time
flew by. Worked on the remaining Christmas decorations, did some laundry and
tried to straighten some around the house.
Adam and Tracy had a quiet weekend. Adam received platelets on Sunday so he
slept for a while. Regular pills are going down OK. Still fusses and stalls
but is getting them down. Hooray!!!
Blood has shown up in Adam's urine (on Sunday). Residents weren't sure what
was causing it, possibly late effect of the cytoxin chemo (when he had the
catheter to prevent bleeding in his bladder). Waiting for attending to make
rounds this morning to see what he/she thinks.
I'm prepared to try the cyclosporin today. (I'm sure Adam's not!!!) I'm
inclined to try the liquid mixed into chocolate milk and have him try
holding
his nose while drinking. We'll see. After a weekend away, I'm more prepared
to deal with this project. Do I detect success? I hope so.
Don't think we will be going home tomorrow due to blood in urine. With this
yucky flu bug going around, I'm not too eager to leave our bubble.
More later.
Patti
1/14/2000 T+15 #2
Well, here's Vol. 2, even though I don't feel much like writing but I
couldn't just leave Vol. 1 hanging out there.
This evening really stunk.....frustrating is a better word. Adam has his
mind
set that he can't swallow pills at all...not even the daily ones he was
doing
so well at. It's a mental battle that went on for 3 hours this evening. The
nurse & I finally gave up after he was exhausted and his stomach was sore
from vomiting...and not one pill went down!!!! I wanted to drag the
resident,
who started this entire fiasco 2 night ago, into the room and make him
figure
out how to improve Adam's confidence (& stop the gag reflex). It's so
discouraging, knowing we had licked this battle way back in November and now
we're back where we started. Somehow, some way he must do it. And he tried
so
hard.....not being stubborn or "controlling" as the social worker said he
might be doing. He's never been one open to suggestions or to try new things
but he's not stubborn...he tries so hard to please.
Ah well...tomorrow's another day,...and then Sunday,...and then Monday which
is slated to be "horse pill" day. Somebody asked why they don't make the
pills smaller. My take on that question is that pharmaceutical companies are
out to make money. If 95% of the people taking these drugs are adults, then
they really aren't going to invest a lot of money into satisfying the needs
of the other 5% of the market (these kids) Also, the pill actually comes in
a
100mg. size which is HUGE....not even I would attempt to swallow it and I
take a lot of large vitamins. He needs 150mg. twice a day which means he
needs six 25mg. pills in a.m. and pm. Those are the only two sizes they
make....LARGE horse pill and HUGE horse pill!
Will we be making a lot of trips back and forth to Univ. Hosp. after we
return home? Let's just say, my bags will remain partially packed. Because
we
will be out of our germ free bubble and around Megan and Tracy who may bring
stuff home with them, I anticipate a few hosp. stays due to fever. (which
are
usually 5-7 days because IV antibiotics are needed and go for that long). We
will also have at least one weekly visit for IVIG(an anti-rejection drug
given by IV for 2 hours) at the Clinic. If he needs any additional blood
products that will be another visit as they wouldn't do both IVIG and
transfusion all in one day.
By the way.....for all of you who have generously given platelets, Vicki
said
that his white count is high enough now (.5) to maintain adequate platelets.
The end of a long night....goodnight to all.
Patti
1/14/2000 T+15 #1
Have a few minutes while Adam eats rice krispies. Yeah.....the 1st food he
has expressed any interest in for days! So, I tried not to trip in my
eagerness to serve him! I'm learning....if I don't make a big deal he may be
more receptive. I keep hearing...DON'T PUSH FOOD. He may not eat normally
for
a few months. He will continue to receive IV nutrition (during night) for as
long as is necessary. And the foods he will want to eat will not be his
norm...spicy, salty foods he will want because chemo has made other foods
have no taste.
Thought I'd just answer some questions friends have asked:
1. Why can't we break or crush these "horse" pills? The cyclosporin is a
very
oily liquid (which is why it must be in a thick gel cap) that adheres to
just
about anything except glass. It does come in a liquid form but has the same
awful smell and taste so it would be worse (in Adam's case) to try to mix it
into something for him to drink. We won't go down that road again. The
liquid
form is also not as accurate a measure. (ie. did he drink it all, how much
stuck to the sides of the glass, did he lick the spoon etc.)
2. Why is his appetite so poor? We are constantly reminded of how toxic the
2
chemos he received were and what they have done to his digestive system (and
who knows what else). Until he has a sufficient white blood cell count, his
digestive system will be slow to repair itself. Even though these young kids
go through these toxic chemos so much better with fewer complications than
adults do, the toxicity is the same if not more and can cause many
complications down the road. (Any childhood leukemia had a poor prognosis 30
years ago. And in Adam's case, with AML, there's much more to learn and
survival beyond five years has only been possible in the past 10 years. And
the type of AML that Adam has, the only possible cure is a bone marrow
transplant. Chemotherapy would have only bought him time.) So, yes, Tracy
and
I are so relieved that things have gone well so far but also realize that
this is no short term disease that Adam has. We must create a new "normal"
life.
3. When can Megan come in to visit again? Not until late spring when flu
season is over. Hopefully, that is not an issue for us. We will not be here
much longer, we hope.
4. How do I pass my time while Adam sleeps? I truly don't have any time.
Adam
doesn't sleep that much and when he does, I usually try to shower,
straighten
the room, go downstairs to get food, prepare his meds into capsules, or send
emails. I have been quite negligent in writing thankyou notes but hope that
people are willing to wait as I feel, at this point in time, the emailing is
more important. I'm able to communicate with so many people. It's amazing
how
many people I can talk to in 10 minutes where a phone call would only be one
person!!!! Plus, by journaling, I'm mentally processing a lot of issues. (I
hope!)
5. Have I seen lots of kids here on the floor? Absolutely, and anyone
studying organizational development would have fun studying how the dynamics
of this "little village" can change over time. Sometimes, it's very lonely,
like right now. Other times it may be busy but the parents or foster parents
I don't click with. Then you have issues of who's really sick, who's on the
mend, who's been recently diagnosed, who's a regular (sickle cell patients
or
ALL leukemia patients) who come in a few days each month. I've found that
with certain parents, we've formed a special bond. We all have something in
common...seriously ill children. In fact, a bond that may be so strong that
it will be hard to return home and listen to or deal with trivial things. I
realize already that this will be something that will be hard for me
personally to accept and adjust to. I feel that this journey has changed our
lives more than we know.
6. Does morphine come in pills? Yes, thank god because I couldn't imagine
tylenol easing the pain.
7. Do volunteers visit? Yes, and they are really needed as so many kids come
from single parent homes and Mom or Dad is at home with other kids, or both
parents work etc. We are so fortunate than one of us is able to be here with
Adam all the time (Thank you to my Mom who is keeping the house running and
is there for Megan!!)
Enough for now. I'll email more later this evening. Going to order Pizza Hut
pizza now to see if that tickles anyone's taste buds.
Patti
1/13/2000 T+14 p.m.
Back to my late night "journaling" Guess I should have known when Adam fell
asleep at 6:30 that it would be a late night.
The pill "episode" has passed but not without aftereffects. Had to skip
morning meds because of gagging. (nothing that HAD to be taken). Part of the
morning Adam was nauseous so extra bolus (sp? new word that means extra
boost) of morphine was given. An hour later he was up and ready to go. The
consensus in the a.m. was that he needed the continuous morphine at a low
dose. As the day progressed and the morphine pump was the only one keeping
him from being free of pole, we opted to try a few hours without. He did
fine
until 6:00 p.m. when toe cramping and head pain and nausea necessitated
morphine. He settled down for a nap and woke up much better so we rode the
bike, played Nintendo. During Nintendo, his eyes started bothering him and
again the toe cramping began. This time I got the nurse right away and got
the morphine in before pain got out of hand.
Yet....Vickie and Dr. Wiersma still talk of home mid week. That means no
morphine and the huge pills must go down. Still is not
eating.....discouraged
at times that things just don't taste right. I tried to order the real Pizza
Hut pizza tonight but the 6:00 pain ended that idea.
Very quiet around here. Only 8 kids on the entire floor (max is 20) Baby
Brandt went home today. Many here (nurses included) think he will be back.
He
also needs morphine for pain crises. Melissa is still here, kidney testing
for graft vs. host is being done. She still can't keep food down.
Enough for now. Thanks again to everyone for all your support (including
your
friends Mary Jo!)
Patti
1/13/2000 T+13 &T+14 a.m.
Goodmorning to all.
Frustrating evening for all of us. We heard the word HOME yesterday morning
(in retrospect, i think it was meant to be enticement to get moving towards
oral meds....a big mountain ahead). HOME as a possibility next week. Don't
think, at least at this point that we will be ready for it. Adam must be off
all IV meds except nutrition IV which we can hook up while he sleep. That
means, no morphine and all other drugs orally.
So, much to our dismay.....and lack of communication apparently between Dr.
Wiersma and myself, his IV cyclosporin was stopped at 5pm yesterday evening.
At 9:00 p.m., while Tracy was here, the nurse brought in Adam's 4 regular
evening pills and 6 cyclorsporin skunk smelling, oily, horse pills. He was
set up for failure from the get-go. It was late, he was tired, the pills
were
gigantic in his eyes and after he threw up the 1st two (along with his 4
regular pills which then had to be repeated) he was pretty upset. We tried 2
more with the same results. The resident's response to our difficulties
initially was that he must swallow them somehow, some way. Well, that
certainly didn't sit well with us. We wanted the IV back on so Adam could
sleep and we'd try again another day, in the morning. I think the resident
just didn't want to call Dr. Wiersma at 11:00 pm to get orders for the IV,
plus his IV dose would be on the wrong cycle for lab work. (blood draws are
done before 9 am) Finally, he agreed to do just that and the IV was started
around 12 midnight.
Gotta run...will send more later today. Adam just got unhooked from all
lines
and is free to ride his bike until 1:00 so I must go.
Patti
1/11/2000 T+12
Good Morning to all,
I was too tired last night to send out an update. T+12 went well. Awake and
active most of the day. White count is .3 Explain that one doctors!! Dr.
Wiersma says to still expect it to drop due to methotrexate.
Received platelets in a.m. Medicated prior to so was a little sleepy in the
morning. Gums are sore, swollen and bleeding when we brush teeth....also
expected. (previous reading tells me we will have many dental visits thru
the
years as the high dose chemos affect teeth and gums long term). Eyelashes
continue to fall out....sometimes into his eyes which is annoying.
Eyelashless(new word) eyes look kind of puffy.
Weight is back up again so it looks like diuretics will be needed today. Mom
must keep the urinal handy!
My little man is up. More later
Patti
1/10/0/2000 T+11
T+11 and all is going well. We've just had a great day!!! Very
active....even
I'm physically tired. We played on the computer, worked on a big floor
puzzle, rode the bike, went to music therapy, and played Batman (Mommy's
favorite game..ohh when will it end?)
Per the doctor, it looks like engraftment is happening. However, we won't
see
any change in counts for 4-5 days because Adam just received his last dose
of
methotrexate chemo. So you're wondering why he's still getting chemo? I
wondered that myself. The chemo he is getting is to control the growth of
Megan's t-lymphocyte cells. My understanding is the chemo will kill off some
of these baby t-cells so that his body doesn't try to reject her marrow
early
on. Anyway, until the methotrexate is out of his system, his counts will
not
increase. In other words, it's likely that engraftment has begun, we just
won't be able to see it in his blood counts.
Adam had some important visitors today. Jon, our minister, stopped by during
music therapy and helped us play the "kilbasa" and "the banana". He also
witnessed the wild man on his big wheels cruising the floor. (the only way
that Jon and I could have any conversation was to send Adam around for
another lap. He must-of done 10 laps!)
Grandma came to visit and helped us plan the "mysterious bat-like adventure"
the next time Daddy comes to sleep over night. Better keep an eye on that
duct tape Daddy!!!
Adam's next door neighbor friend, Bryce came to visit also. Bryce and his
friend Elliot are doing an English paper on the most important person they
know. And they picked Adam (& his "shining star" Megan) to interview. They
even videotaped their interview. Adam has no idea what a compliment Bryce
and
Elliot have given him!! He felt pretty proud of himself, showing the boys
how
good he is at Nintendo (good thing they didn't ask him anything about
Batman...geeze)
We've been 22 days in-patient now, and I must say, I never thought we'd be
doing so well at this point. Am I getting ansy...to be honest yes. But, I'll
do 22 more days if they will go as smoothly as these have. For me, my
biggest
worry is graft vs. host.
I enjoy all of the emails..though I'm behind on responding to some of them.
Goodnight..Patti
1/9/2000 T+10
White count is back down to <.1. Dr. Wiersma told Tracy that this can
happen.
Actually, we don't want the counts to climb too fast as Adam may experience
more side effects, not graft vs. host necessarily, just short term side
effects. (joint pain, nausea, diarhea)
Contiuous morphine seems to be helping. Adam slept until about 1:00 and was
pretty active most of the evening for me. It's 11:20 now and he's getting
sleepy. (I hope)
Being home with Megan was nice. Never seems like there are enough hours
though. So much to cram in to 2 days. (and I'm not doing laundry or food or
groceries....thanks Mom!!!)
Other transplant patient Melissa went home on Friday but returned this
morning. Spiked a fever during the night and couldn't keep food down. Seems
like she and baby Brandt go through these cycles. I'm preparing myself for
these ups and downs but hope that things go smoother for us. Anyway, we have
so darn much stuff in this room now, I'd sure hate to have to move it back
in
a day or two later!!!
More tomorrow.
Patti
1/8/2000 T+9
Painful day for Adam. Started a continuous morphine drip in the morning. Had
periods of breakthru pain. Morphine level may need to be adjusted. Weight is
up again. May need diuretic again to reduce water retention. Swelling around
his eyes seems to show up first. (Eyelashes are beginning to fall out now
too.)
A piece of what we hope is good news. His white count this morning was .1
instead of <.1. Small increase.... however when Dr. requested workup on the
white cells, it showed 6 neutrophils which shows that engraftment may be
beginning. This would also explain the additional pain that Adam is feeling.
We are praying!!!! White counts are not expected to climb very fast....we
may
see .1 for a few more days.
Tracy is with Adam for the weekend. Megs and Mom are doing our "girl thing".
We watched "Little House on the Prairie" movies which I must admit, we both
enjoyed.
I caught up on some sleep this morning and spent a quiet day in the house.
So
nice not to have strangers barreling into my space all day and night long.
Thanks again to all of you for your continued support and interest in our
journey.
Patti
1/7/2000 T+8
Adam had a good day. Dr. Nieder suggested they we consider a continuous
morphine drip rather than medicating after pain hits. As the early morning
started out with pain, we tried the morphine about every two hours. Worked
well and Adam was fairly active in the afternoon. Slept most of the morning
due to Benedryl prior to red blood transfusion. (Finally, he has "pinked
up"
after a transfusion. It's odd to see Adam with color.)
For about a half hour late in the afternoon Adam was able to be unhooked
from
"The Pole". Still had a small pump for one line but we were able to tape it
into "the trunk" of his favorite big wheel bike and we went a-cruisin.
The big excitement of the day however is: we got a new Pole! This one is
the
cadillac of all poles! We now have double poles on the top half that even
out
the weight of the pumps. It even has a tray for me to carry a drink along
the
way. But the best part: 3 pumps plug into the bottom of the pole and only
one
cord needs to be plugged into the wall. We no longer have to reside in
places
where there are 4 sockets nearby!!!! (life here has such BIG MOMENTS....it
takes my breath away! :):):)
All in all T+8 was a pretty good day. Pizza Hut in a bag still drips 18
hours
each day so weight is being maintained. Ate almost nothing....saltines and
a
few smartie candies. Jody (occupational therapist) and I will talk next
week
about Adam's poor eating habits (since he was a baby.) Once we return home,
healthy, balanced food consumption will become important to maintain weight
and keep meds level in his system. I've been told, he may be taking upwards
of 20-25 pills a day for a while.Good thing we learned to swallow pills!
All for now.
Patti
1/6/2000 T+7
This email is going to be short. It is now 11:45 pm. Adam is irritable
(slept
most of the day) and can't find a movie he wants to watch. I'm tired but it
looks like i'll be watching a movie too.
T+7 has been what was expected. Morphine takes away the pain but no food
went
in except a couple of saltines and mento candies. Pretty irritable most of
the waking day except when Dad played Nintendo.
Platelets were transfused today and it looks like more red blood tomorrow.
Dr. Nieder says not to expect counts to go up for awhile. No fevers which is
good. Handwashing is the key.
Had retained alot of fluids overnight due to the mega amount pushed through
yesterday. Dropped about 1/2 the extra fluid by this evening. (Hope we're
aren't back to the bathtub again!!)
I'll close for now. Looks like Batman video wins. Where's Dianne when I need
her???
Adam's cute comment of the day. He wondered if he could take his urinal
bottle home with him to use. Just as any other mother would say, I said, "of
course not, you can't be peeing in the living room!" (Now if you've seen our
living room carpet, you'd wonder why I'd even worry).
Patti
1/5/2000 T+6
We had a GREAT Day. Started out with Adam not even mentioning that his
throat
hurt so he didn't have morphine for pain until about 3:00. The hospital was
to be doing maintenance on the air filtration system on the hemoc floor so
we
were going to have to stay in the room with the door closed and a portable
air system brought in (The maintenance has been postponed until tomorrow
a.m.
now). Knowing that we were to be cooped up in our room, I requested PT
(physical therapy) to come up early and give Adam a good workout since he
was
feeling so well.
Betsy came up for PT around 9:00 (yes, I was up and moving before the
resident came in at 8:00) and gave Adam a good workout. He loved it. Pedaled
the bike, waved etc. The Dr's said he looked great.
Grandma visited for a while and again we got out of bed and played ball a
bit.
Had OT (occupational therapy) in the afternoon. During all of this activity
Adam was given both the IVIG (anti-rejection drug) and red blood transfusion
which he was premedicated for. Didn't tire him a bit. Short nap for a while
and then played Nintendo till Dad came in to visit after his dinner.
Still has an IV pole loaded with meds.I guess I'd rather have IV bags than
pills for him to swallow. The pills will come later (big time) I am told.
I really felt good today about how things are going but still must be
cautiously optimistic. Melissa, who is at T+32(?) is showing signs of kidney
and liver rejection. Not good when major organs become involved. A lot can
be
controlled with steroids. Tough for her and Mom as they've been here quite a
long time. We have many days of worry to go yet.
I appreciate all the support from EVERYONE. I feel bad that I do not know
who
donates platelets unless someone tells me. Confidential information that the
pheresis dept. can't disclose. So, thanks to everyone who's donated
platelets. Directly or indirectly, Adam is benefiting from your kindness.
Adam's Mom
1/4/2000 T+5
Greetings to all,
Adam had a quiet but good day. Not as active as I had hoped we could be
today. Rode the bike (Adam that is) just a bit, but clearly very tired. Dr.
Nieder suggested getting him out of the room as much as possible because if
he comes down with a fever he'll have to stay in his room. Good point.
Mucositis is setting in...an expected side effect of the chemo. Adam's
throat
and esauphegous are very sore and saliva has become very thick.(and
uncomfortable). I was told today that days 7-10 tend to be a little rough.
Hopefully, because he's done so well so far, we will fare pretty well.
IV nutrition was started around 4:00 today. We told Adam it was Pizza Hut in
a bag. He didn't believe us...it was lemonade yellow. What a smart little
guy. I feel a little better knowing that something nutritious is going in.
I was invited to attend the Rainbow Family Advisory Council monthly meeting
tonight by a member who's 15 year old son was treated 3 years ago for
leukemia (they have no donor as yet). He's in remission. It was interesting
to hear the sharing of ideas between interns, nurse supervisor and parents.
I
had no idea how much the interns must do each day and how involved they are
in each of their patients care. I thought there sole purpose was to be my
morning wake up call!!!(Just kidding but some mornings it does seem that
way). In fact I learned that the more info I pass along to Adam's intern,
the
more info Dr. Nieder has to assess his progress. Overall, I was glad I
went....needed some adult conversation anyway.
Enough for tonight....if I type too much longer I will have "the intern
alarm
clock" tomorrow morning.
Patti
1/3/2000 T+4
A quiet day...good. Adam's beginning to have throat pain which means the
chemo is doing its job (killing good cells as well as the bad) The digestive
tract and hair follicles are affected because they have the most new cell
activity (that's how I understood it anyway). A little morphine seems to
take
the pain away.
Tracy spent the day with Adam so Megan and I could do some girl time. This
is
going to be tougher for Megan to be away more so than I thought. She misses
the normalcy she used to have. A little adjustment in our schedules (Tracy &
I ) will be necessary so that I can go home a bit during the week when she's
home from school.
Adam slept I good bit today which Dr. Nieder said is to be expected. I'm
concerned about his lack of nutrition. Will see if they are planning to
start
him on IV nutrition tomorrow. They had talked about it the other day but
apparently the little bit he was eating was nutritious enought.His white
count is still extremely low, again to be expected. (the normal range for a
healthy person's white count is a range of 6.0-17.5. Adam's is 0.4 It looks
like he will need more red blood again tomorrow as his hemoglobin is also
low.
Adam's friend Kate Waggoner and her Mom, Pam and sister Celia came to visit
this morning. Kate, who is 13 (14?...sorry Kate) is wonderful with him. He
just "swells up" with self confidence when he's around Kate. The Waggoner's
live down the street from us and this past summer Adam would always want to
go down and "play" with Kate (I think he may have made a few sneak visits
that Mom may not have known about). He was so hurt when Tracy and I told him
he couldn't go down to Kate's without us scheduling it in advance. I, the
Mom, had visions of the little tagalong kid! Now our latest activity of
interest is to send Kate emails and she sends back really cool picture mail
for Adam (Batman, of course).
Enough for tonight. As I've been thinking these last few days, I think doing
this email thing is my form of therapy (or journaling). Sometimes I feel as
if I'm sharing my own, private thoughts to a huge audience, something I
wouldn't normally do. But, at the same time I've found it to be a great way
to keep friends and family updated frequently and I love knowing that Adam
has lots of prayers and support (Thanks to everyone. The return emails can
brighten our day.
Patti
1/2/2000 T+3
Greetings from Rainbow 2:
Adam had a very good day. Ate a little bit better today. Had another piece
of
Pizza Hut pizza this evening....looks like that's going to be the rest of
the
family's mainstay also. IV nutrition was not started today, not sure why and
Tracy didn't ask. Hopefully, Adams' eating enough. You would think we could
monitor this by his weight which the nurses take at 5 a.m. and 5 p.m. (now I
don't know about any of you but I would not be too happy to be woken up each
morning at 5 a.m. to be weighed! Adam weathers it fine and Mom could sleep
through a vacuum cleaner next to her bed....right Mary Beth???) Anyway,
these
kids weight can fluctuate sometimes quite a bit due to fluid retention. They
seem to run Mega fluids through constantly (or it just seems like it as we
are taking potty breaks constantly)
Adam received platelets today which will help with bruising and clotting.
He's also showing the beginning of a couple of mouth sores so we have to
really do the mouth swabing med religiously.
Adam was very active today Tracy said. Platelets and red blood he received
the other day have helped. No bone pain to speak of. All in all, we think
he's doing tremendously well.
Megan is here for her last sleepover with Adam. Tomorrow is the last day for
sibs under 12 to visit. She is down the hall playing with Melissa who is
also
9 (and one of the other two transplant patients from Thanksgiving). They
seem
to play well and Melissa is lonely, eager to have someone to play with.
Off to get two little people to bed.
Patti
1/1/2000 T+2
Adam had a very good day. Felt good most of the day. Had some leg and jaw
pain intermittently but was given Adavan and that helped. Not as active
today. (We must make a better effort of keeping him moving). Interest in
food
is almost nonexistent as is drinking much of anything. Had a few fritos
midday and one piece of pizza in the evening but that was about it. Tomorrow
it looks like he will be started on IV nutrition until he begins to eat
sufficiently.
Tracy is sleeping over with Adam tonight and tomorrow night and we are
thinking about having Megan sleepover tomorrow night also. Sunday is the
last
day siblings or kids under 12 can be on the floor until flu season ends.
This
will be hard if Adam is inpatient for an extended period of time.
All in all, we think Adam is doing amazingly well. Doctors don't say but
they're never much for getting parents hopes up. Things can change so
quickly.
Hope everyone had a Happy New Year.
Patti
12/31/99 1 Day after transplant
Happy New Year...Almost!!!
We've had a good day overall. Adam was tired and feeling the beginning of
bone pain in the a.m. Plus, he's getting a very sore bum (which from past
experience we know that we have to watch carefully. If it becomes an open
wound it can turn into a serious blood infection. So Adam soaks in the
bathtub frequently. And going "potty" has become no short process.).
The floor began celebrating New Years at around 11:00 a.m. knowing most of
these little kids wouldn't be awake for the real thing. Adam was sleepy as
he
was getting meds before his red blood transfusion. Red blood takes about 3
hours. Mid- ay I went home for a couple of hours to shower and sleep. Tracy
said the blood was like instant energy. Adam was active and full of energy
all afternoon. Even rode his bike for a while. It's extremely important for
us to encourage Adam to be active. As the bone pain increases he will want
to
lay in bed. He will be getting occupational and physical therapy to keep
muscles in shape. I questioned the necessity of this but was told that long
term it will benefit Adam and sometimes kids perform better for someone
other
than Mom or Dad.
We are anticipating that Adam will begin nutrition via IV in the next day or
two. Not surprising as he's not eating much and what he does eat is not too
nutritious. Adults who receive chemo understand that food will not taste the
same but know that they need to eat healthy. To a child, there is something
wrong with the food. Mom isn't fixing it the same etc. Our selection has
become quite limited.
It is now 11:00. Tracy's trying to get Adam to sleep so that we can
celebrate
alone but so far it's not working. So much for time alone.Megan is spending
the night at her cousins.
Happy New Year....the year 2000 will be a very good year!!!!
Patti
12/30/99 TRANSPLANT DAY
We made it! All went smoothly....only took about 10 minutes, infused via
syringe. Vicki came down the hall with a very large syringe (holding about a
cup of stem cells) in a bag of ice. Adam was pretty dozy as he had been
prepped for the last hour with different meds, two of which made him sleepy.
He was hooked up to multiple monitors (and the usual top-heavy IV pole.)
We all gathered around Adam (Tracy,with video camera, Megan, my Mom and
myself) as Vicki cleaned his line and inserted the syringe. Vicki began to
push the cells in and then Megan "our star" got to push. Then Tracy and I
took a turn and then back to Megan until the syringe was empty. Vicki teared
up.....my eyes were dry....I'm think I'm just too numb over the turn of
events since Oct. 18th.
Adam did just great. In fact the nurse had a very large bowl ready as most
people (90%) vomit during the transplant process. A chemical (or
preservative?) that is in the infusion has a very strong smell. I would
describe it as pickled red beats though Vicki says it smells like garlic.
Anyway, the transplant patient often throws up from this very strong
smell/taste in their mouth. Interestingly, the smell stays with the patient
(and the room) for a few days. Adam has his very own special smell now.
Whew!!!
Adam slept most of the afternoon. My brother Mark and wife LeAnne were here
donating platelets but were downstairs during the big event. My sister
Katie,
also donated platelets (blood relatives can now donate which we couldn't do
before because Adam could build antibodies against Megan's marrow).Katie's
husband Terry had planned to donate also but woke up with a cold. So Terry
and their two boys, Ryan and Colin (who also had colds and couldn't come in
to see Adam) sat down in the atrium all afternoon. Adam's gameboy got a
workout for sure.
Adam's blood counts are very low. He's what they call neutropenic which
means
he's extremely susceptible to infections now. Tracy & I both said we must be
extra careful now not to let our guard down. Things seem to be going so
smoothly that we could get lax about handwashing and general
cleanliness...don't put dirty socked feet on Adam's bed, no fresh fruit or
vegetables near Adam. No food sitting in the room longer than 90 min.
Though all is going smooth now we have yet to see effects from chemo. That
will occur sometime after Sunday. Mouthsores, digestive and intestinal
sores.
Adam's new fuzz of blondish hair will fall out again. In a few months, after
being on an an anti-rejection drug called cyclopsporin (which he began
receiving 2 days ago and will continue thru about 6mos post transplant)
causes kids to grow lots of dark hair. Adam will be strutting around with
his
very own mustache and hairy cheeks. Even eyebrows become heavy and actually
look like one big eyebrow.
This is about it for one very long day. We've turned a corner.....Adam is a
survivor!!
Thanks for everyone's prayers....I thank God every day that we still have
our
little boy.
Patti
12/29/99 1 Day to transplant
So close...tomorrow's transplant day. Actual time will be around 1:30 or
2:00.
Had a tough night last night (bladder spasms) which morphine didn't settle.
Exhausted, Adam slept most of the morning into part of the afternoon. The
Foley catheter came out around 2:30. Wasn't long after when Adam realized he
was going to have to pee out of his very sore penis!!! (I had been
forewarned
that this could be difficult) So into the bathtub we went for the rest of
the
day and coaxed and talked to "the pee pee" until we had relief. This could
be
a long night if we have to hop in the bathtub every hour or so. This is
progress though.
My friend, Dianne from work stopped by to give platelets and visit. She and
Adam connected immediately....they both like Batman (or one of them
pretended
to). It was great to see Adam so confident and excited when talking to
Dianne. Megan and Tracy arrived while Dianne was here so we all had a nice
visit.
More tomorrow.
Patti
12/28/99 2 Days to transplant
Greetings to All,
What day is this...I keep asking. The world is speeding on by and all I
know
is that this is T minus 2. We truly are in our own world here.
Adam's doing very well...I think he is. Vicki agreed and Dr. Nieder said
he's
doing as well as he'd expected. We experienced our 1st fever last evening
that is referred to as "spiking a fever" Within about 45 min. Adam went
from
normal temp to 103.8. He was started on antibiotics which he will continue
for a long time (not sure what a long time means). Most likely was a
reaction
to the ATG (an anti-rejection med) but to be safe they will treat with
antibiotics in case it is bacterial. At this point Adam has virtually no
immune system.
Our IV cart is beginning to look top-heavy....bags, pumps and for a while
again today he had 2 IV poles....and a catheter. Of course he wanted to go
play Nintendo but I wasn't about to maneuver all the equipment and Adam
(with
cath that continues to cause pain). So we opted for our big window just
outside the room. I honestly don't know how these nurses keep track of
which
med start and stop when. That's why they're the nurses and I'm not....I'm
just the Mom who must figure out the logistics of moving from bed to couch,
bed to wheelchair, wheelchair to bike, and then if I'm still up to it bike
to
playroom.
Tomorrow is supposed to be somewhat of a day of rest, though there will
still
be plenty of IV bags flowing but NO MORE CHEMO!!!
Many people have asked what actually happens on Thursday when Adam receives
Megan's marrow. It is actually very anticlimactic....not at all like in the
movies. Dr. Nieder will hang a bag of what looks like a steakum (for lack
of
a better description) and hook it up to Adam's IV. It will be a significant
moment for all of us and particularly for Megan and Adam (How little either
of them understands how significant this is!). It will be a very special
moment for us.
Then we begin to wait and wait and wait for engraftment and hopefully
breeze
on by all the potential complications we have been warned of. At the
moment,
I'm feeling very good about this, especially since Adam has done so well so
far. But, I also know from the previous two transplants (in progress as of
Thanksgiving) that things can go wrong and very fast. So we move ahead
cautiously optimistic and take it one day at a time.
It is now 8:00 p.m. Megan is in the playroom playing Nintendo with
Melissa,
another 9 year old patient here. Adam is here in the room playing Nintedo
with Tracy. My Mom is relaxing after a busy day of cookie baking with Megan
(and laundry too I would guess). I'm here catching up on E-mails and
attempting to make notes/questions etc. regarding our insurance changeover
effective Jan. 1. Lisa and I had fun last night....it was her turn to "man"
the nurse button during the night when Adam's pumps start beeping. (I slept
well). We did have our Mexican beer (minus the lime) and felt so young
sneeking around. We reminisced college days.
More tomorrow.
Patti
12/27/99 3 Days to transplant
T-3 and counting.....oh so close and no turning back now....not that it
was
ever an option but still very unsettling. Sleep has become somewhat
intermittant...experiencing pain and/or spasms from catheter. But it's a
necessary evil. Looking tired around his eyes but holding his weight pretty
well.
Began one of the graft vs. host meds today and will continue it for a
while.
He is given Benadryl to counteract any potential reaction so he's pretty
subdued. His IV pole is beginning to look a little top-heavy though I've
seen
some worse. If he was up for any marathon bike rides or bus stop games I'd
be
struggling with the lines, pumps and poles. (Adam is somewhat oblivious to
the frantic state I can be in). Actually, it's good for me... a little
exercies, a little more stress. And he's happy,so we'll continue our bike
rides.
My best friend, Lisa, from Philly is due to arrive shortly. We are planning
an overnite, (can't drink and drive!). We have much to catch up on and I
could use a few beers.
...well scratch the mega beers....Adam's temp just went up to 100.2. Looks
like I may need to be in "Mommy mode" . I'm not going to worry yet.
Nurse just told me that this is not uncommon as the graft vs. host med is
pretty strong and kids can react to it. If it spikes anymore though, they
will begin him on bacterial meds just to be safe.
Thanks again to all of you who have been such good e-mailers back. I will
attempt to respond individually this week sometime as it looks like Adam
may
not be quite as active.
Patti
12/26/99 4 Days to transplant
Greetings.
I missed most of yesterday as I went out to my sister Katie's in Bowling
Green with Megan and my Mom. "The boys" hung out together.Glad I missed the
catheter experience as it turned into a 4 hour event. After 3 attempts a
urologist was called down and he couldn't get it in. After a mega dose of a
relaxent med it was in on the 5th try. Poor little guy. Now he doesn't want
to move the leg its taped to. (still has his aversion to tape, band-aids
etc.)
2nd chemo, cyclophosphamide was started 12/25 about noon. He will have it
through 12/28. So far, he seems to be weathering it pretty well.
This floor is pretty deserted, only 5 kids as of today. I'm sure it will
begin to fill up now that Christmas is over.
Hope everyone's Christmas was nice. More tomorrow.
Patti
12/25/99 6 Days to transplant
Merry Christmas!!
T-6, 12/24 went very well. My brother Mark and his wife LeAnne came in to
visit. Mark is the brother we were visiting, in PA, when this “journey”
began. Then Aunt Karen Smith came in to visit after donating platelets
again.
She and the pheresis people are on first name basis now.
The feeding tube was removed promptly (by Adam) at 12:15 a.m. after his last
Busulfan dose. Cause for celebration. But what a tradeoff....the Foley
catheter goes in this a.m.
We (all 4 of us are here....Megan slept over last night) are all waiting for
Santa to arrive. Maybe he's Tim Couch in disguise. There are only 6 kids on
the floor so it's pretty quiet around here. We "snatched" one of two
recliner
chairs from one of the empty rooms. (Reminded me of how we, the vultures
scarf up pens, staplers, chairs etc. at work when someone leaves). Human
nature....survivial, I guess.
Gotta go. Merry Christmas to all!
Patti
12/24/99 T-7 (7 Days to Transplant)
I'm in my own little world so much of late that I momentarily forget that
Christmas is here. I just went downstairs to my favorite two coffee spots
and
neither was open...even the cafeteria was deserted. Case Western Reserve
students have gone home to family too.
Yesterday was a very good day. Pam and Celia Waggoner came to visit in the
morning with Grandma and Megan. Adam was really looking forward to seeing
Kate, ( Celia's sister) who is his favorite babysitter but she had a cold
and
couldn't make it. Barb, my friend from our pregnancy days came in to visit
later in the day. Nice to visit with people who are special to me.
Adam was feeling pretty good...counting down days until he can have the
feeding tube removed. Tomorrow morning (A Christmas present????) it will be
removed. As usual, there is a tradeoff. He doesn't know yet that the feeding
tube comes out but in goes a Foley catheter. Now he's really gonnna love
that!!! One step at a time.
Physical therapy came to visit later in the afternoon. He will be needing PT
to keep his muscles moving after transplant. Muscle stiffness & pain can be
a
problem. His double vision from Dilantin has cleared up but balance is still
a little off. Something is making him a little "not himself" and I'm finding
I can't leave him for too long by himself...a trip down the hall to get
coffee is about it. He's doing strange things. He keeps trying to climb over
his bed rails and yesterday I caught him trying to climb up on his food
table
(which is on wheels!!!!) He also forgets that he's hooked up to the IV pole
and stretches his line just a bit further than I 'm comfortable with. I also
found him trying to urinate in his urinal ( a two inch diameter opening)
that
was at least two feet away! Even when I hold it inches from him, somehow I
still manage to get wet. He's so cute
though...trying so hard to do things his own way.
Nintendo is still a favorite as is riding his trike (like a speed demon)
around the floor. We haven't peeled over anyone yet.
I've had a chance to talk with Josh's mom (he's 3 and has neuroblastoma) and
will be undergoing an allogenic (use of patients own bone marrow) transplant
at the end of January. His Mom's name is Yvonna. Someone else I can relate
to....has the same worries, fears etc. He will be in here through Christmas
also.
Gotta go....Adam's plate of bacon has arrived. Steroids and salt go
together.
Guess I get the French toast.
Thanks again for all the uplifting E-mails....I love hearing "You've got
mail".
Merry Christmas,
Patti
12/23/99 T-8
Sorry I didn't get this E-mail out last night. Couldn't get
online....imagine
that at 11:30 p.m.
T-8 went better than t-9. Still irritable in the a.m. and not focusing well
or balancing. One dose of Dilantin was skipped as his level was at the top
end. Received a red blood transfusion midday and Adam was like a new boy. He
really needed it!!! Megan and Daddy came out around dinner and he was back
to
his old self except for his unsteady walking. Laughing and having a good
time. His favorite nurse Kathy ("hey you're pretty cute" he said to Kathy
awhile back) came in to visit. And the maintenance man came up to fix the
defective Nintendo connection on the wall so we now have Nintendo in the
room. Sometimes it's hard for the little kids to get use of the shared
Nintendo in the playroom because older siblings of other kids tend to "hog"
the machine....guess they're a little bored too.
Busalfan (chemo) dose has been almost doubled which is OK. Each child
metabolizes it differently. No side effects yet except for diarrhea which
just started this AM. Thank God for pull-ups! Adam, Mr. "don't put anything
goooey or sticky on me" decided he liked having Mom give him a body massage
with his new special lotion. This is good as his skin will get very dry.
Feeding tube is staying put after the 5th one. He looks rather comical as
nurse Kathy convinced him he would look really grown up if he magic markered
the tape under his nose to make a mustache. Looks a little like Charlie
Chaplan!
Adam's eating as well as I would expect. It's difficult to time his hunger
just right. the Busulfan is given at 6:00, 12:00, 6:00, and 12:00 and he
can't eat 2 hours before and 1 hour after (or drink) so it gets a little
difficult, especially around dinner time when he's really hungry and can't
eat until 7:00. Distraction is working well so far.
Adam slept well last night. Mom is feeling the effects of her "rock"
mattress. I think I'm going to have Tracy bring in an eggshell pad. I need
to
exercise a bit too. There is an exercise bike on the floor so I better check
it out.
More later today.
Thanks for all the super E-mails. I feel like super Mom. Let me tell you
though when I hear some of these other parents talk, we don't have it so
bad.
Another little boy (24 mos. old) had a bone marrow transplant just after
Thanksgiving for neuroblastoma (nerve cancer) that had spread to his bone
marrow. Both of his parents have taken a leave from their jobs as they have
no relatives nearby. He has a 3 year old brother and a 5 week old sister.
(Mom had just found out she was expecting the sister one day before Brandt's
diagnosis) Another Mom who I've become friends with has a 2 yr. old daughter
and Josh who is 3 who also has neuroblastoma and will be having a transplant
in late Jan.
Thank God we have plenty of support, especially my Mom who has put her life
on hold to help out on the home front.
More later.
Patti
12/21/99 T-9
Not a very good day for Adam and as the day wore on Mom & Dad got a little
tired. Either Dr.s gave him too much Dilantin (anti-seizure drug) or Adam
was
exhibiting one of the side effects. Hopefully we will see improvement
tomorrow after they check his level at 3:00 a.m.
He awoke not himself. Couldn't focus his eyes and lacked fine motor skills.
(Couldn't get cereal spoon to his mouth). Couldn't walk without assistance.
Pulled the feeding tube out. And then tonight, while I was in the bathroom,
he climbed out of bed, yanked his IV plug out of the wall and was halfway
across the room when I found him. Now that was not like Adam. Before, he
knew
that it could really hurt his IV line if he didn't watch while getting out
of
bed, therefore he wouldn't do it. He's making me nervous!!!!!
Began his Busalfan at 6:00 a.m. (The first of the two hi-dose chemos)
He's finally fallen asleep and will hopefully sleep well.
More tomorrow.
Thanks for all of the great E-mails today. I'll attempt to answer tomorrow.
Patti
12/20/99
Subject: Day T-10 (10 Days to Transplant)
Hi to all
Day 1 almost down. Surgery that was scheduled for 11:00 a.m. didn't happen
until 5:15 p.m. We were prepared for a wait this time as last time they were
4 hours behind schedule also. 2nd central line went in without a hitch and
is
right to the left of the other line which is excellent for dressing changes.
Had some difficulties with the NG tube (feeding tube) but its in now and has
stayed put for about 2 hours. 1st time Adam pulled it out by accident as he
was coming out of anesthesia and the 2nd time his stomach forced it out.(Now
that was an interesting 1/2 hour!!!) But it's back in and hopefully we are
settled for the night.
Trivial things....our palatial room is great. It's like a dorm room (without
the music and beer of course) but plenty of space for an extended stay.
Also,
the add'l phone line for Internet hookup is free. (It should be for what
we/insurance are paying per day!) And, most important of all....Adam can
hook-up his own Nintendo 64 in his room once we get the correct adapter.
Megan is doing great. Came down with a cold on Saturday and had us nervous
that Adam would catch it and have to postpone the transplant. He needs
transplant asap but it will also be helpful to have transplant done before
the end of the year for insurance purposes as Tracy's insurance
plan/coverage
changes Jan. 1. Transplant day is 12/30...how about that for cutting it
close?
As I read what I've just written it almost sounds like I'm having fun here.
But don't get me wrong....I'm scared out of my mind but don't let myself
even
think about the "what ifs". I'm so afraid to stop and reflect upon the past
two months or to think too much about what's ahead. If I do, I'll fall
apart.
I keep repeating to myself what Dr. Keurbitz said on Diagnosis Day. Adam is
Adam and regardless what statistics say, Adam will be either a 0 or 100%, so
don't even waste worry time on past statistics. I must focus on each day and
deal with each day, hour, minute as it comes.
Enough analysis for now. Better head to my not-so-soft bed and rest while I
can.
Patti
12/17/99
Greetings to all our E-mail friends,
Another long day but we are fininshed until Monday. Megan did go back for a
second stem cell harvest. As yesterday, she did very well. No, she said it
was not painful, just hard to sit still for so long without moving either
arm. And for those of you who know Megan well, know how much she can talk,
especially when she has nothing to do! She was quite entertaining!!!
Adam's EKG and echocardiogram went well. Those little sticky things were not
his favorite. (He still has a great aversion to band-aids) As I've said
before, his worries are so different than Tracy's and mine. We also visited
the dentist and had xrays done just to be sure no cavities were in the
works.
All looked good. Adam was not happy to hear he must start using toothpaste
with flouride in it. He was still using infant/baby Orajell mouth and gum
paste. (He's definately a little man set in his ways!) But we will adjust to
this latest change just as we have everything else that has changed since
Oct. 18th.
Now we are all home for the weekend to rest, relax, enjoy each other and
live
in denial for a few days (at least). Monday a.m. will be here before we know
it.
Again, thanks to all of you for your continuing prayers and interest in Adam
and Megan. We are blessed with many good friends!
Patti
12/16/99
Greetings to all. Megan did great! According to the lab prior to her
harvest,
"she was overflowing with stem cells". Guess the Neupogen shots were worth
the pain!!!. It took 3 hours for the cycle to complete. Not bad, though we
actually spent six hours in total. Megan was pretty ansy by the last hour
and
counting the minutes the last half. Don't know if I could have sat for 3
hours straight with both arms immobile. But she did great. Don't know yet if
we need to go back for more tomorrow. Should know later tonight.
Tomorrow is still a busy day. Adam has an EKG and an Echocardiogram in the
a.m. and then we head to the dentist for xrays and any dental work that he
may need to have done beforehand. Apparently teeth infections can be a real
problem during transplant process.
On to evening activities. More updates to follow. Enjoy reading all of my
e-mails. It's like waiting for the mailman!!!!
Patti
12/14/99
Greetings to all,
As I sit here, I am overwhelmed by the support and prayers. Thankyou, thank
you thank you. Those of you who have E-mailed, I will reply as soon as I
can.
Today is turning out to be quite a busy day for me, and Adam also.
Tracy and I met with Vicki and Dr. Nieder yesterday afternoon. Went about as
well as I had prepared myself for. It has become increasingly clear to both
of us that this is no short term illness that we are dealing with. The
transplant and the days leading up to it are going to be incredibly scary in
themselves but the side effects can be pretty bad and could potentially
become fatal or chronic.
Because Megan and Adam are not a perfect match (5 out of 6) and the mismatch
is a rather critical one it is for sure that Adam will have some graft Vs
host disease which can affect just about any organ/system of his body. The
common sites are skin (rashes, blisters), gut (which includes the entire
digestive system from esophagus down through intestines) liver, heart,
lungs,
muscles. All of these potential sites can be controlled by medication but as
we all know they also carry their share of side effects. IF after 100 days
post transplant if he still has any of these areas affected, they will then
become labeled as chronic.
The pluses to graft vs. host are two:
1) With graft vs. host you also get graft vs. leukemia which briefly means
that if any leukemia cells do resurface Megan's marrow will recognize them
as
foreign and kill them off. It's catch 22 really....some graft vs. host is
good because it reduces the probability that Adam may relapse, but too much
can reduce his quality of life. (a definate concern to both Tracy & I).
2) To reduce some potential graft Vs host, Dr. Neider will have some of
Megan's T-cells (those that cause G vs. H) removed from marrow prior to Adam
receiving it. But again...catch 22, if they remove too many T-cells then
Adams body will have difficulty engrafting (accepting Megan's marrow and
allowing it to function for him).
Along with all that wonderful info., we heard more about how toxic the high
dose chemo is and potential complications during the first few weeks. (the
probability of Adam being sterile is most likely). When I heard that, I
accepted it as that's the way it has to be. We have no choices here or
rather
limited choices (we could opt not to do transplant....which is not even an
option for Tracy or I....as he would most likely die within a few months).
What I find interesting is how accepting we have both become. If someone had
told me six months ago that Adam was sterile (and that that was the only
thing wrong with him I would have been so upset). Now, it is way down on the
worry list! If he makes it to the age when it becomes an issue, we will be
so
grateful that we made it that far!
For our friends asking about visiting soon...though I'd love to have company
at the hospital, I don't think the timing will be right in the next few
weeks. 12/20 to 12/24 shouldn't be too bad but starting 12/25 on it's going
to get pretty unpredictable and Tracy & I most likely will be existing on
very little sleep. (Those of you who know me well know that I don't do well
on very little sleep...yes Lisa, I don' t run on an Energizer battery like
you do.) I do enjoy the E-mails though.
Gotta go for now.
Those of you wondering about Adam's need for platelets. He will potentially
be needing some from 12/23 on. However, check with the donor office first as
I know everyone is busy this time of year and he only uses 1/2 of a donation
at a time because of his size. Thanks again to all of you who have
graciously
donated your time and platelets for Adam.
Patti
12/11/99
Greetings to all our friends and family,
We finally have our schedule for Adams transplant. It turns out Vicki was
busy getting things lined up for us. Since Tracy's medical insurance is
changing to a different carrier Jan. 1, 2000, it has slowed the approval
process down a bit.
Dr. Nieder has moved the admit date back up to 12/20. He doesn't feel
comfortable moving it out 1 week. Adam needs a bone marrow transplant as soon
as possible as this remission is really very temporary. Tracy & I both
agree.
Again, Christmas is only one holiday. We can celebrate one week earlier. We
would rather have Adam around for many more Christmases.
So, our wheels are spinning into gear now. Tracy & I meet with Dr. Nieder &
Vicki (transplant coordinator who I will refer to a lot....she's the detail
person...a nurse practitioner) on Monday, 12/13 to discuss specifics etc.
and long term effects etc.
Thursday, Megan will begin stem cell donation and Adam will have another
echocardiogram to get baseline heart function prior to transplant. (High
dose
chemo can damage heart.) Friday, Megan will return to hospital for additional
stem cell draw. She may have to return on Sat. if necessary.
Adam will be admitted Monday 12/20 for surgery to have additional central
line put in chest and feeding tube (uck!!) Unfortunately we won't be able to
participate in the clinical trial to have the chemo drug Busulfan via IV
instead of feeding tube. Feeding tube will be removed on 12/25 as Busulfan
will be completed by then. 12/25 - 12/28 he is given another chemo drug combo via IV
and will be sedated most of that time as side effects are pretty bad. 12/29
will be a day of rest. Transplant day will be 12/30. From there on we wait &
wait & wait for graft to take.
That's about all we know for now. This next week will be a very special
family time for us. Though Adam's prognosis has been a little shaky from the
beginning we are confident that God is with us for the long haul.
Thanks to all of you again for your support and interest in Adam. And the
gifts from everyone have been nice, though Adam is getting spoiled. Every
time Glenn stops by or I return home from work, he wonders if he has any
presents.
Please note my new E-mail address. I will be picking up messages at the
hospital with this new address.
I would love to hear from all of you. Your support gives us the extra energy
to keep going and to stay grounded in the here & now, which Tracy does much
better with. I tend to worry about the future and how Adam will be after
transplant.
Return E-mails are greatly appreciated as I like to hear about every day
life
in households operating in a "normal" mode. (yea, we all wonder what
"normal"
is but you know what I mean.)
Is anyone in need of a turkey?. I have two of them taking up room in my
freezer and would love to get at least one out of there. If someone would
like to handle a donation to the needy with one of them, please come and get
it. Thanks!
Patti
12/7/99
WE HAVE REMISSION!!!
Don't know all of the details yet. (Will know more tomorrow). Adam's marrow
looked good and he had only 3% blasts. Less than 5% is good. No more chemo
(except for high dose chemo before transplant.) Transplant will take place
aft
er Christmas. A clinical trial we are eligible for we can't get into until
12/26. (The trial is for IV use of Busulfan, rather than feeding tube for 5
days to take drug orally...the only way the drug can be taken at this point.
More as I get updated.
Patti
12/1/99
Hi to all,
Yes, my Mom has been back and forth. More here than in Canton. It has been
great having her here as Megan needs consistency in a very inconsistent
household these days. We can't even tell the kids when Santa will
arrive.(Mmmm...wonder if Santa accepts E-mail in the North Pole with
delivery
within 24 hours!!)
As for Megan's stem cell donation. I'm not sure but I would expect that to
still happen within the next two weeks as they will freeze them until Adam
is
ready for them. She's ready to go. After close inspection of her veins on
Monday, Dr. Neider (who will be Adam's transplant Dr.) said she may have
good
enough veins to extract stem cells through both arms rather than surgery to
install a temporary port in her chest. A relief to us as surgery also means
anesthesia which we would like to not have to do. The downside of stem cell
draw via arm veins is that she will not have use of both arms for about 5
hours for 2-3 afternoons. Now we all know how much Megan likes to "chat" and
Mom and Dad will be at her "beck and call.!!"
As for Adam and ports...he actually has to have a second port surgically
inserted in his chest before transplant. They will need four lines; for
blood, fluids, nutrition and meds. The second port he will have in for about
3 months post transplant. His other port will remain in for at least 12
months. (He still won't be a star swimmer yet this summer).
More another evening.
Patti
12/1/99
Hi to all,
Yes, my Mom has been back and forth. More here than in Canton. It has been
great having her here as Megan needs consistency in a very inconsistent
household these days. We can't even tell the kids when Santa will
arrive.(Mmmm...wonder if Santa accepts E-mail in the North Pole with
delivery
within 24 hours!!)
As for Megan's stem cell donation. I'm not sure but I would expect that to
still happen within the next two weeks as they will freeze them until Adam
is
ready for them. She's ready to go. After close inspection of her veins on
Monday, Dr. Neider (who will be Adam's transplant Dr.) said she may have
good
enough veins to extract stem cells through both arms rather than surgery to
install a temporary port in her chest. A relief to us as surgery also means
anesthesia which we would like to not have to do. The downside of stem cell
draw via arm veins is that she will not have use of both arms for about 5
hours for 2-3 afternoons. Now we all know how much Megan likes to "chat" and
Mom and Dad will be at her "beck and call.!!"
As for Adam and ports...he actually has to have a second port surgically
inserted in his chest before transplant. They will need four lines; for
blood, fluids, nutrition and meds. The second port he will have in for about
3 months post transplant. His other port will remain in for at least 12
months. (He still won't be a star swimmer yet this summer).
More another evening.
Patti
11/30/99
Hi to all,
Thanks to all of you who have sent notes back. I don't have time to
respond to each individually tonight but wanted to send out the latest. Will
respond when I can.
Some days are up and some are down. Today was one of those down days. We
were hoping to hear the news that Adam is in remission. We don't have a
definitive "no he's not in remission" we are in the wait mode again. Dr. K.
feels that the bone marrow biopsy which was done on Monday was done to soon
after Neupogen shots were given. (I was giving Adam a daily shot of Neupogen
that was artificially elevating his bone marrow production which was to help
his immunity) Dr.K feels that the Neupogen also gave him an artificial count
of bone marrow blasts (which are the baby cells being developed in marrow)
Adam's type of cancer is actually the baby cells that never mature. They
just
multiply as baby cells and serve no purpose except take up room in marrow
and
blood. Rather complicated to explain.
In summary, Dr. K. would like to wait this week out and redo bone marrow
biopsy next Monday and then we will decide whether he needs more chemo or we
go directly to bone marrow transplant. So we wait.......and prepare for the
Christmas that we aren't sure when we will have. We are putting up the tree
tonight. The "Boys" are putting on the lights now.
More later. Thanks to all of you for your continuing support and
prayers.
We are so fortunate to have supportive friends and family.
Patti
11/20/99
Hi to all,
Adam readmitted on Thursday evening due to high temperature...what we
had
been told to expect at any time due to low white counts. Wednesday evening
he
was as chipper as ever....a little chatterbox until 12:30 a.m.
Woke up with a rash on his face and head. As the day progressed it
became
more prominent. Dr. Kuerbitz thinks it may be a fungal infection (not
unusual). A dermatologist will take a sample on Saturday. Just to be safe,
he
was started on antibacterial and anti-fungal meds. Either way its a 7-14 day
treatment. I began unpacking the suitcase last evening as it looks like
more
than a one or two day stay.
More later...now back to my hot chocolate that Megan "the waitress"
just
served me.
Patti
11/20/99
Hi to all,
Adam readmitted on Thursday evening due to high temperature...what we had been told to expect at any time due to low white counts. Wednesday evening he was as chipper as ever....a little chatterbox until 12:30 a.m.
Woke up with a rash on his face and head. As the day progressed it became
more prominent. Dr. Kuerbitz thinks it may be a fungal infection (not unusual). A dermatologist will take a sample on Saturday. Just to be safe, he was started on antibacterial and anti-fungal meds. Either way its a 7-14 day treatment. I began unpacking the suitcase last evening as it looks like more than a one or two day stay.
More later...now back to my hot chocolate that Megan "the waitress"
justserved me.
Patti
11/16/99
Hi to all,
Yes, the good news is...Adam is still home!! No fever yet. Doctor is quite
amazed. Said that maybe Adam's immune system was not as compressed as most
kids who get leukemia. We are enjoying every minute of his time at home.
Batman and Superman videos are the latest activity of great interest.
Tomorrow we return to outpatient clinic for more platelets. (Thanks again to all of you who have donated....some of you even more that once).
Patti
11/16/99
Hi to all,
Yes, the good news is...Adam is still home!! No fever yet. Doctor is quite
amazed. Said that maybe Adam's immune system was not as compressed as most
kids who get leukemia. We are enjoying every minute of his time at home.
Batman and Superman videos are the latest activity of great interest.
Tomorrow we return to outpatient clinic for more platelets. (Thanks again to all of you who have donated....some of you even more that once).
Patti
Monday, May 22, 2000 at 08:35 PM (CDT)
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