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Update on Alex's Fight Against Leukemia

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Thursday April 8, 2004

Hi Everyone,

Just a quick update to let you know that Alex had the LP (lumbar puncture) on Tuesday and the results came back yesterday. Zero leukemia blasts in her CNS! At this point it's possible that the seizure was caused by whatever respiratory virus all four of us currently have. It also appears that the seizure triggered the increase in her White Blood Count (WBC). As of Tuesday her WBC was back down to normal range.

Because of the virus, Alex is going to miss school all of this week and next week is Easter break. As long as there are no further complications she'll return the school after the break.

Thanks again to everyone for helping us through yet another crisis. Take care.


Saturday April 3, 2004 @ 10 pm

Hi Everyone,

We're out of the hospital! Alex had an MRI today and although the calcifications (scarring) from her prior radiation and chemo treatments remain, there was nothing there to cause alarm. The doctors feel that she will remain stable as long as she remains on Depakote, an anti-seizure medication. What this means is that Alex will more than likely have to take Depakote for the rest of her life to avoid future seizures.

The doctors also didn't feel it was necessary to do the LP (lumbar puncture) before we left the hospital today. We should know by Monday when it will be scheduled for.

I think the seizure was all part of Alex's master plan to get her Grandma to fly up from Southern California to visit her. Or as Andrea put it:

"A girl's gotta do what a girl's gotta do to get Grandma on the first plane up!"

...and she was. Thank you Grandma.

So far we haven't noticed any residual effects of the seizures. Alex is doing great and is back to her normal, spunky self. I'll post again once I have more information.

Take care.


P.S. Here are a few photos from Alex's first day at school

Friday April 2, 2004 @ 11:30 pm

Hi Everyone,

Just when you think you're out, you get pulled back in. Nick, Alex and I were playing in the backyard today and having a great time. I took Nick upstairs for his afternoon nap and by the time I came back down, Alex was acting strangely. At first she was just clumsy and a little forgetful, but within 5 minutes it was obvious that she was altered and in the midst of a seizure.

We immediately called 911 and were transported up to Childrens Seattle by ambulance. Upon arrival at the ER, the seizures worsened and she was put on Dilantin (an anti-seizure med) and taken to Radiology for a CT scan. The results of the CT scan didn't look any different than one done in 2002, so for the moment we have no idea what caused the seizure. The only thing out of the ordinary so far is that her White Blood Count has jumped from 7 to 17.9 in just 4 days. This could mean that she has an infection, but it could also mean she's relapsed yet again. The fact that she doesn't have a fever only confuses us more.

Alex just had a CBC w/ diff drawn, and there are no leukemia blasts in her blood. She'll have an LP (lumbar puncture) tomorrow to determine if she has relapsed in the CNS and also to rule meningitis. She'll also have an MRI tomorrow, so hopefully we'll know what's going on soon.

I'm staying at the hospital tonight and will send another message as soon as I have some more news.

Take care.


Thursday April 1, 2004

Hi Everyone,

Alex & Nick w/ Liz @ Corporate Angel NetworkI'm sure there are many of you standing in line behind my mom ready to take my head off if I don't update!!!! So, here it is!

Our trip back east was fantastic. The day after we landed we got to go to the Corporate Angel Network office and finally meet everyone that works so hard to get us flights! We have flown into White Plains where their office is a few times, but it has always been when the office is closed. After a really nice visit, we drove up to Albany NY to spend the weekend with Todd's Aunt Doris, his cousin Heidi and her family. We had a great time with them and Alex was in heaven playing with her second cousins Patrick and Zachary.

Alex & Aunt Doris Filling the Bird Feeder Cousin Heidi, her husband Mike & Nick Cousins! Patrick, Nick, Alex & Zachary

After Albany we flew down to D.C. and it was awesome. We met Senator Maria Cantwell and her staff as well as Congressman Norm Dicks and his staff. We could not have been more impressed by either one. They went out of their way to make us feel welcome and listen to what we had to say. We are already looking forward to next year!

Alex & Congressman Patrick Kennedy All of Us w/ Senator Maria Cantwell The Three of us w/ Congressman Norm Dicks

After we were done in D.C. we flew back up to New Jersey and spent our last weekend with Todd's brother Jimmy, his wife Kris and our niece Rachel. We had a great time with them and the girls played non-stop and even got to have a sleep over on Saturday night.

More Cousins! Nick, Rachel & Alex Out for a drive!

Both of the kids have been doing great. Nick is just as busy as ever and is the biggest flirt you've ever seen! He never passes up an opportunity to smile at a pretty girl.

Alex & Mrs Klemme at SchoolAlex has been doing great. Thursday will be her one year transplant anniversary! It's amazing to look back and see how far she has come. We had been trying to figure out something big to do for her first "birthday" and we now have our answer! We received news on Tuesday that we have been waiting to hear... Alex has enough of an immune system to go back to school!!!!!!!! She starts on Thursday! She has no clue and won't until we walk her into her classroom on Thursday morning! I can't wait to see the look on her face. She has been having "school" at the school since we got back from the east coast, but it has been her and her teacher, Mrs. Klemme in a little room alone. While she has really enjoyed being able to go to the school instead of having class at home, she has been asking constantly when she gets to go in with the other kids and complaining about having to go into the "little room". So the plan for now is that she will go to school on Thursday as usual, but instead of walking her into her "little classroom", we will walk her into her new big classroom! She's going to go nuts! Todd and I are both thrilled and terrified with this next new step. She is still so fragile in so many ways, but she is crawling out of her skin wanting to get out and be a kid.

Well, even though I have so much more I could tell you, I am going to have to cut this short. I'm having a very difficult time composing complete and coherent sentences because as usual, it's very late at night and I am beyond ready for night night! Sorry. Thank you for coming and checking up on us! I also want to thank all of you that faithfully sign Alex's guestbook. She really gets a kick out of it and we really enjoy checking it and get so much encouragement from it. Yes, even from you mom!!!! hehehe Until next time...

Take Care,

Andrea, Todd, Alex and Nick

More Photos...

Todd's Blog
Today's Subject: MTBE & the NIH Budget Cuts

Hi Everyone,

In the past I've been hesitant to politicize Alex Update for fear of offending anyone, but recent events have changed my mind. You may ask what events I'm referring to. They are the following...

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