Tuesday April 23, 2002
Sorry about the long delay between updates. A lot has happened in the last 18 days and most of it was good!
Alex finished up her four days of high dose IL-2 (Interleukin 2) on April 8th. She had a high fever for the last two days of the infusion and she left the hospital with a 104 degree fever. Luckily by the next morning the fever was gone and she was feeling great. After a four day break, Alex started 10 days of low dose IL-2 treatments at home. For 9 1/2 days everything was great and we thought we had lucked out. Then last night, six hours before the treatments ended, her temperature went up to 104 degrees! It hasn't gone above 102 degrees today, so hopefully it's just a delayed reaction to the IL-2. We really don't want to spend another night in the hospital right now.
On Thursday Alex will have a bone marrow aspirate and also have her PIC line removed. After this week we're scheduled to go back to clinic only once a month for a bone marrow aspirate and blood test. I'm still a little nervous about going back to monthly appointments, so I may push for bi-monthly instead. Not that I'm paranoid or anything! <grin>
On the fundraising front,
Marysville-Pilchuck High School held a talent show last Friday with Alex as the Guest of Honor. We're not sure yet how much money was raised for Alex's expenses, but we had a blast. Right in the middle of the show, the emcee asked for people to come up on stage who had a talent. Alex decided she wanted to be up there, so she suckered one of her new friends into taking her up on stage. She then sang the Alphabet song (starting with L!) in front of 200 high school students and their families and of course got a standing ovation! At the end of the talent show she handed out the awards to the winners, most of whom gave her a big hug. Needless to say she had a great time. We'd like to thank everyone at Pilchuck High, especially April
Scheffler for asking us to be involved with their talent show.
On the housing front, no news is bad news. We still haven't got an offer on the house and our yard has been destroyed by a
European Crane Fly infestation! Those of you not living in the Pacific Northwest probably haven't heard about this insect, but it is nasty. They lay their eggs on your lawn and their larvae eat all your grass. So far we've lost about 60% of our front yard and a large portion of the back yard. It's going to cost us $500-$1000 to get rid of the crane fly larvae and reseed our lawn, but we have to do it if we're going to get this house sold. To top things off we'll probably have to stay away from the house for a few days after the pesticide has been sprayed on our lawn. Don't want to expose Alex to anything that may trigger another relapse. Just what we needed right now, more expenses!
We're hoping to fly back to Duke next week (while the lawn is being sprayed), as they are having their annual Rainbow of Heroes Walk on May 4th to raise money for the Family Support Program at Duke. The
Family Support Program
provides emotional support and financial aid to PBMT patients and families during their time at Duke and we would like to show our support by being there.
It would also give us a chance to meet with Dr. K for the first time in 18
months. Corporate Angel Network is attempting to find us a flight to/from North Carolina, so Alex won't have to fly commercially. We could fly commercial if a Corporate Angel flight can't be found, but we're a little concerned about flying cross-country with Alex right now. Five hours on a
commercial jet isn't the best place for someone whose immune system may or may not be working effectively.
And now for some really good news. In the last update I mentioned that the FDA, with support from the Bush Administration, was planning to suspend the
Pediatric Rule which requires drug companies to hold pediatric drug trials. Well last week the FDA and the Bush Administration backed down and agreed to continue enforcement of the
Pediatric Rule! While this is a great victory, it does not lessen the need for Congress to pass legislation to codify the F.D.A.'s authority to require pediatric
drug trials. Senators Hillary Clinton of New York, Mike DeWine of Ohio (our favorite Republican) and Christopher Dodd of Connecticut have proposed legislation that would ensure that no administrative whim
could again put the Pediatric Rule in jeopardy. Check out the Alex's Coupons
Take Action page for more information on what you can do to help get this legislation passed.
Thanks again to all of you for 3 1/2 years of love, support and prayers.
Todd, Andrea and Alex
c/o Alexandra Elaine Martini
P.O. Box 527
Lake Stevens, WA 98258