Friday April 5, 2002
I'm writing this update from Alex's hospital room. Alex went back in-patient on Thursday to begin her four days of high dose IL-2. The IL-2 treatments are going pretty well so far, although she is experiencing a few side effects including fever, nausea, muscle aches and headaches. Not that any side effects are going to slow Alex down. She spent most of today playing and even painted a "Thank You" poster for Larry Boy. The Veggie Tales people sent her an autographed poster of Larry Boy plus VHS and DVD versions of "The Angry Eyebrows", so Alex wanted to do something for Larry Boy. <grin>
Alex also had a blood test on Thursday and her counts continue to be good (ANC of over 1800!). In fact all of her counts are within normal range which is pretty amazing, considering what she's gone through over the past few months. I don't know how she does it, but she's already back to her old self. Hard to believe that six weeks ago she was too weak to get out of her hospital bed.
After we get out of the hospital on Monday, Alex will get a four day break and then start 10 days of low dose IL-2 treatments at home. She won't be able to take Gymnastics classes with an IV pump, but she should be able to do just about anything else. After the low dose IL-2 treatments are done, we'll enter "wait and see" mode. We'll continue to have blood tests every two weeks and a bone marrow aspirate every month. Other than that all we can do is hope and pray that maybe this time we've beaten this thing.
Before going back in the hospital we flew down to Southern California to spend Easter with Andrea's parents. Alex went to two
Easter Egg hunts (one just for her and one for the neighborhood) and had a great time. We did discover that our beautiful princess is just a little bit sneaky. At the start of the neighborhood Easter Egg hunt all of the kids went in one direction except for Alex. Instead she went in the opposite direction and cleared out an entire patch of Easter Eggs before the other kids got over there!
Andrea's parents had two free tickets to Disneyland, so the day after Easter we took a mini Wish Trip with Alex. We went on some rides (Autopia and Dumbo were her favorites), ate dinner with the cartoon characters and generally had a blast. The best part of the day was watching Alex dance with the other kids at Goofy's Kitchen. Every 45 minutes they have a dance number with all of the kids and the cartoon characters, and Alex was out there dancing up a storm! I don't know where she gets the dancing gene from, as Andrea and I are avowed wallflowers, but this kid can shake her booty!
Things are starting to look up a little on the housing front. We had a few people look at the house this week and
were hopeful that one couple would make an offer. Unfortunately our 3200 sq'
house (+ 800 sq' basement) was too small for them since they had four kids.
Of course my parents raised four kids in a 2000 sq' house, so I think they
could have made it work. <grin>
Well I'm going to wrap this up and head home for the night. Andrea is going to stay with Alex tonight and tomorrow I get the honor of sleeping on the Chair Bed from Hell! At least this time we're only going to be sleeping on it for four days, instead of a month.
Thanks again to all of you for 3 1/2 years of love, support and prayers.
Todd, Andrea and Alex
P.S. Special thanks once again to Rising Stars Gymnastics for hosting "Flip for Alex" which so far has raised $4500 over the past few weeks!
HERE to view a 15 second video of Alex dancing at Disneyland. The
clip is 2.6 mg. in size, so it will take awhile to load for those of you
with dialup connections. The video is also a little dark, even after
lightening it with VideoStudio. I'm still looking for a good Video Editor,
so email me if you know of
c/o Alexandra Elaine Martini
P.O. Box 527
Lake Stevens, WA 98258
Click Here to read about the FDA's plan (with backing from the Bush
Administration) to suspend the 1998 Pediatric Rule. The 1998 Pediatric Rule
guarantees that drug companies must include pediatric patients in new drug
trials. If the FDA follows through on this plan, it will make it harder for
pediatric patients like Alex to get access to new drugs. Without this rule,
Wyeth Ayerst would not have been required to make Mylotarg trials available
to pediatric patients. Without pediatric Mylotarg trials, Alex would not be
Please contact your Congressional
representatives to let them know your feelings on this issue. I
especially want to encourage those of you with Republican representatives to
contact them immediately. 12 senators sent a letter to HHS secretary Tommy
Thompson expressing serious concerns about suspending the Pediatric Rule,
but only one of them was a Republican (Mike DeWine R-Ohio). Senator DeWine
is well known to us as he was a speaker at Childhood Cancer Day 2000 and has
been a strong supporter of Pediatric Cancer Research and access to drug
trials for Pediatric Patients. If we're to have any chance of convincing the
FDA (and the Bush Administration) that suspending the Pediatric Rule is a
mistake, we need to bring more Congressional Republicans over to our side.
Thanks in advance.
P.S. If you don't want to
signup for Medscape, Click Here
for the text of the article