They were given two options: One at UCLA medical center and another in Switzerland. These were the only two places that were conducting the trial using a newly developed drug called ATG. When I was accepted into the drug trial at UCLA, I was the only child on the trial and only one of 6 children being put on the medicine. I know now that I was a guinea pig and that the doctors had no idea what dosage to use on me, if this medicine would work for me, or if would kill me. The doctors had to continually stop the medication because I had reactions that could have been from the meds or they could have meant infection. There were many unknowns in the process. BUt the long and short of it is that I benefitted from being allowed to be on a phase I trial of a medication that was previously only used on adults. Had I been diagnosed 3 years earlier, there would not have been any medical options for me. I would have been put on Prednisone and the doctors would have hoped for the best. Today, ATG is one of the standard protocols that aplastic anemia patients try when they are diagnosed. It has been used for the past 28 years and has had great success.
Had I not been accepted into the program at UCLA, my parents would have taken me to Switzerland because it was the only hope that they had to save me. Parents will go to the ends of the earth to save their children and my parents would have done anything to have the opportunity to get into this trial. I remember that I was initially rejected from the UCLA program and after a lot of desperate talking and offers on my parent’s part to pay the bill, I was accepted.
When I think back on what my mom and dad were feeling and the desperation that they must have been hiding from me, I get teary eyed. I can’t imagine facing that with one of my own children now. Having any kind of medical option is most certainly giving a family HOPE and more than that sometimes, a CURE and a chance to share so many more years with your child and perhaps even your grandchildren.
Childhood Cancer Survivor
CURE Board Member