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Update on Alex's Fight Against Leukemia

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Thursday, May 29, 2003 (Day 58 Post-Transplant)

Hi Everyone,

As usual, sorry for the long wait for an update. We are ready for our one hundred lashes with the wet noodle. Unfortunately we've had very little free time lately, and when we do have some we seem to only have the energy to give the backs of our eyelids a thorough exam! We are stressed, tired and homesick.

Alex is doing fantastic. We are still blown away by her, she truly is the Teflon Kid. She has all of her vocabulary and personality back, including the exasperated eye rolls and heavy sighs! She is working very hard at getting her leg strength back, but still has a long way to go, as she can't walk up and down the stairs without help. This is from a combination of things, including her tremendous weight gain since we started the transplant process.

Alex & Nick Hanging OutWhen we started Alex weighed 36 pounds. She now fluctuates between 41-44 pounds. I know that this might not seem like a lot, but it's about 20% of her body weight. It would be like a 150 pound person gaining about 30 pounds in just a matter of weeks. To make matters worse her muscles atrophied during the weight gain, as she was unable to get out of bed. And to top it off, the drug that caused the weight gain in the first place, Solumedrol, also causes wasting of muscle!!! Add all this up and it's amazing she can even walk at all! Solumedrol is also the same drug that was wreaking havoc on her Insulin. With yesterday's Solumedrol wean, her glucose levels were actually too low today. We had to give her juice, French toast with real maple syrup and M&Ms just to get her back into normal range. Luckily, she is slowly being weaned off the Solumedrol a little bit every Tuesday.

Because of the low glucose levels, Alex ended up only getting one unit of insulin this morning and we had to hold the rest of the day's doses. She would normally get 3 shots a day of 4 1/2 units of one type of insulin (NPH) and anywhere from 1 to 3 units of another (humolog). With yesterday's Solumedrol wean, it appears that we might be done with the Insulin shots altogether. Just in the nick of time, as her poor arms are so bruised from the shots, they make her look like an abused child. She has really been amazingly tolerant of the shots, as she just sits there without flinching when I give them to her. Of course trying to get her to take her oral meds is another story! We are running out of good threats to make her take them, so if anyone has some good ones that have proven effective...let us know!

Staring at the Pretty Lady!The weather here has been pretty miserable with non-stop rain, which makes it almost impossible to get out of the apartment. When we do have a rare sunny day we try to get out and do something outdoors. Last week we enjoyed a visit from Ingrid and Nate Parry. Nate was here for his 3 year post-transplant studies. We got to spend time with them and even went out to dinner one night at California Pizza Kitchen. (We now have a list of all the restaurants in the area that have patios!!!) Then Ingrid, being the angel that she is, took Nick for an entire night so we could get a full 8 hours sleep! It was heaven! Thank you Ingrid!!! Nick didn't seem to mind at all as he seemed to have quite a large crush on the "pretty lady"!

Nate & Alex Hard at WorkAt this point Alex's care can be summed up in three words: wean, maintain and watch. She is on 9 oral meds and 5 IV meds. Every morning and every night at 8:30, I turn into the mad chemist mixing drugs, priming IV lines and making yogurt drug cocktails. By the time the last pump is done every night, it's well after midnight. The daytime doses finish just after Noon. If it's a clinic day, we pack up and head off for our 4-8 hour adventure in waiting. This is part of the reason that we sometimes fall behind in writing the updates. We sometimes just need to sit and do nothing. We had very little sanity going into this and we need to try to preserve the little bit that's left. I know that some of you would argue that there is nothing left to save, I agree with you much of the time (at least where Todd is concerned!).

Dora & NickThe reason that you must stay no more than 20 minutes from the hospital for the first 100 days is because if bad things are going to happen, this is usually when they happen. There is often no warning and things can go downhill very fast. We are continually watching for changes in her skin, stool and personality, as well as watching for fevers and vomiting. All of these could signal serious Graft vs Host disease (GVHD) or an infection. Both of which require immediate attention.

Here's an example of how quickly things can take a turn for the worst. One of the little boys that was transplanted around the same time as Alex, and discharged the day before her, is not only back in the hospital, but in the PICU. We don't take a single minute for granted. Since we have been here 6 kids have lost their battle for life. There are currently 3 kids in PICU still fighting for their lives. These are not kids and families that we met in passing or just heard about through the grapevine. These are families that we lived with, ate with and shared with. These are people that have seen me in my pajamas and without makeup!!! I can't tell you how hard it is to see them suffer while you try to enjoy your own child's triumphs. The kids that are currently in PICU are Noah, Alex and Aristophanes. Please keep them and their families in your thoughts and prayers.

He Smiles!Nick still thinks that he's "He Man". He was up to 11 lbs 9 oz and 23 1/2 inches last Saturday. It is just amazing to look at him and remember back to when you could stuff him in your shirt and hardly see him in there. He is 5 1/2 months old, 2 months adjusted, and growing out of many of his 0-3 month clothes already! He loves to lay on his play mat, hitting and grabbing the dangling toys while they dance for him. Then when the music stops and they stop dancing, he yells at them. He has already developed a fondness for Elmo and will sit straight up on my lap, holding his head and upper body perfectly still, and stare at the TV when he's on. He also seems to quite enjoy baseball. It must be inbred in the male genes! He's smiling more and more and we even get a cute chuckle from him every once in a while. He is sleeping better at night, but is still very irregular. A week ago, he slept from 9:30 pm until 6:00 am without a peep out of him. The following three nights he was up every three hours. Typically though, he'll go down at around 9:30 and sleep until 4:00 or 5:00 then go back to sleep after eating a few ounces. It wouldn't be so bad if we could go to sleep at 9:30 with him, but since we don't ever get to bed before 1 am, we are in constant zombie mode.

We are looking forward to July 11th. This is our 100 day mark and the first day we are eligible to go home. This will only happen if we remain complication free. We aren't sure if we will actually be leaving on the 11th though. We are hoping to fly home with the same company that we flew out here with, and I think that the first empty flight going from DC to Seattle will be on Monday, July 14th. It would be great if this worked out because our trip out here was a fantastic flight with a great crew.

Well, that's about all the coherent (or semi-coherent) thoughts that I can put together for now. It's almost 1 am and I need to get to bed before Nick decides to wake up for his "snack". Again, we apologize for the lack of updates, but we really are doing the best we can right now. There is just no way to explain how tired, stressed and brain dead we are. Thank you for continuing to check in and for your continued support and prayers,. It really means the world to us to know how many of you care for our family.

Take Care,

-- Andrea, Todd, Alex & Nick Martini

Dad Wake Up! Yawn!

C'mon Dad Wake Up! Smile


Donations for Alex

We are in the process of raising money for the expenses we are incurring during Alex's 2nd Transplant At Duke. We have 3 ways in which you can make a donation:

Mail to: Frontier Bank
c/o Alexandra Elaine Martini
P.O. Box 527
Lake Stevens, WA 98258


via PayPal using your checking account or PayPal Account (this account cannot accept credit cards)


via PayPal using your credit card (this account can accept credit cards)

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