Saturday November 3, 2000
Well it's been a crazy five weeks since we last updated Alex's site. We flew back east on October 9th to visit with my family for a week. After that we flew down to Duke University for Alex's 1 year post-transplant checkup. We were supposed to be there for four days. We ended up staying there for almost two weeks as we couldn't get a flight home. Luckily that gave us time to go out to dinner with some of Alex's nurses, as well as visit with friends. We were finally able to get a flight from Charlotte, NC to Oakland on Corporate Angel. From there we flew home commercially to Seattle after three weeks away. You cannot imagine how good it feels to be home. Even better, Alex's checkup went great and her leukemia has not returned. It's still too early to celebrate, but we're cautiously optimistic. Is there any other type of optimism? <grin>
On a happy note, this week's (11/6/00) PEOPLE magazine has a great story on Dr. Kurtzberg at Duke and it includes a photo of Alex at the beginning of the article, along with a couple of paragraphs about her fight against Leukemia. The photo was taken back in January when we were still at Duke, so those of you familiar with her recent pictures probably won't recognize her. The story (and photo) are on p. 111.
We also got word today that Congress unanimously passed a resolution recognizing the need to raise awareness of Childhood Cancer in the United States. As you know we flew to Washington DC in September for
Childhood Cancer Gold Ribbon Day sponsored by the NCCF. Andrea (along with a number of other parents and doctors) spoke in front of a Congressional subcommittee on the need for increased funding for Childhood Cancer research along with increased access to clinical trials for children. It's great to see that these efforts made an impact.
Of course the resolution is strictly a symbolic gesture. Now we need to start pushing for money for research. You don't realize how under-funded Childhood Cancer research is, until you hear the figures. Every year 3000 children die from Cancer and 100 children die from AIDS in the US. The number of children diagnosed with Cancer in the US has risen 1% each year for the past 10 years, while the number of children diagnosed with AIDS in the US has fallen dramatically. Guess which disease gets more funding? You'll be surprised to know that the budget for pediatric AIDS research quadruples the budget for pediatric Cancer research!
As you can imagine the lack of funding and lack of access to clinical trials cuts very close to home for us. Alex is alive today because of two cutting edge treatments (Cord Blood Transplant & Mylotarg) which are not readily available to many children. Alex was only the 16th child in the US to receive Mylotarg and only because we demanded that it be tried. We were only able to get these treatments because we fought for them. Sometimes the fight was against our insurance company and other times it was against our doctors.
In the next few months we'll be launching a website to raise awareness of Childhood Cancer even more. I've donated my time and my graphic artist has also donated her time. In addition a local company here in Washington state has donated a server to host the site and an online database which I'm using to compile a directory of Childhood Cancer sites. I'll be sure to send a message to everyone when we go live.
Lastly I wanted to talk a little about the upcoming election. While I'm usually not one to publicly espouse my political leanings, I feel very strongly about this election.
When I look at the issues of this campaign, the one that stands out the most for me is the environment. For many of you this issue might not be at the top of your list, but you need to take a look around and see what is happening in this country. While adult Cancer has stabilized over the past 20 years, childhood Cancer has gone up 1% every year for the past 10 years. One out of every 10 children will be diagnosed with Cancer before the age of 18. Doctors are not entirely sure what is causing this increase in Childhood Cancer, but in most cases environmental pollution is the chief suspect. The cause of Alex's leukemia is unknown, but there is little doubt in our minds that it is environmentally linked. As many of you know our chief suspect is MTBE, a gasoline additive, that has been found to cause leukemia in rats. Another possible cause is Benzene (another gasoline additive). Both of these chemicals have been found in drinking supplies throughout California.
I'll be very blunt. I do not believe that George W. Bush will do much to protect our environment. He and his running mate are both former oil executives who have shown a blatant disregard for environmental concerns in the past. I also do not believe that Bush will take a leading role in increasing funding for Childhood Cancer research. He has shown during his tenure as Governor of Texas that children's healthcare is not a major focus of his administration.
In total contrast to Bush is Green Party candidate Ralph Nader who is obviously concerned about the environment. I greatly appreciate Nader's support of environmental causes, but I am also a realist. Nader has no chance of winning this election and if voting for him leads to a Bush victory I would never forgive myself.
After careful consideration both Andrea and I have decided to support Al Gore for President of the United States. While our views differ in some areas with the Vice President, we feel that he will do the most to protect our environment and champion children's healthcare issues. I would encourage all of you to vote for Al Gore this Election Day. Please feel free to forward this update to anyone you know who may be undecided on who to vote for this year.
Thanks again for all your love and support.
Andrea, Todd and Alex