Monday June 26, 2000
Guess where we are? We're back at Duke! Last Monday we got the news that Fred Hutch in Seattle would not give Alex a second dose of the Mylotarg, even though there were signs that it was working (0 leukemia blasts in the blood/stable in the marrow). Instead the head doctor at Fred Hutch wanted to start reinduction chemo that Wednesday in preparation for a bone marrow transplant.
Andrea and I talked it over and we both realized that we were not comfortable with the treatment that Fred Hutch was proposing. We were also very disappointed that they would not give Alex a second dose of Mylotarg. We contacted Dr. Kurtzberg on Monday and started making arrangements to return to Duke. At the urging of Andrea's Dad we also started looking into the possibility of having Duke administer a second dose of the Mylotarg.
It turned out that Mylotarg was approved by the FDA last November so Dr. K. was able to get a second dose for Alex. She received the second dose two days ago (Saturday) and will have a bone marrow biopsy in two weeks to see if it succeeds in getting her back into remission. Alex's blood tests continue to show 0 blasts in her blood, so we're cautiously hopeful that this will work. Dr. K. is still hoping that we can get Alex's marrow back to 100% donor. If that happens we may be able to avoid a second transplant which would be fantastic. The chances of a successful 2nd transplant are only 25%, so we need everyone to pray that her marrow returns to 100% donor.
It was hard to leave Seattle only a month after moving there, but the best place for Alex is Duke. No matter the outcome we know we've made the right decision to come back here. I just wish I could have convinced Andrea to move here last year! <grin> Alex is still outpatient for the moment so we're going to start apartment hunting
tomorrow. In the meantime our friends Brad & Nancy Shelton have graciously opened up their home to us.
I'm still planning to fly back to Portland Wednesday morning and then drive up to Seattle. As many of you know I started a new job with an Internet startup company the same day that Alex relapsed. It's a telecommuting job, but it still requires that I have access to my home office. I also need to get home to take care of our two dogs and cat, and hopefully finish unpacking. I plan to fly out to Duke every other weekend, unless we're able to arrange free flights through Corporate Angel Network or some other source. The ticket for my flight home this Wednesday cost $400 and subsequent flights will probably be at least $300 a pop, so this could get very expensive.
I don't know how I'm going to cope with being separated from Alex for two weeks at a time. I've been with her almost every minute of every day since she was born. I know I'm biased, but I truly feel like the luckiest man in the world because she's my daughter. I just pray that we'll be given the chance to watch her grow up.
In addition to Brad & Nancy we would like to thank the following:
Corporate Angel Network for arranging our flights from Portland to North Carolina.
Roger, Priscilla & John for sharing their flight from Portland to
Everyone at VF Corp. for allowing us to catch a ride on their flight from New Jersey to North Carolina.
Our buddy Brian for picking us up at the airport in New York and dropping us off at the hotel that night.
Dr. Joanne Kurtzberg and all of the staff at Duke University for immediately making us feel right at home again. The minute we walked through the door we knew we had made the right decision.
...and all of you who have prayed for Alex's recovery over these past 20 months. Without your love and support I don't know where we would be.
Todd, Andrea and Alex