Thursday April 8, 2004
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.
Saturday April 3, 2004 @ 10 pm
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.
P.S. Here are a few photos from
Alex's first day at school
Friday April 2, 2004 @ 11:30 pm
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
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.
Thursday April 1, 2004
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.
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
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
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.
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...
Andrea, Todd, Alex and Nick