Destiny:
My heart goes out to you. In September of 2008 our daughter Kathryn was diagnosed with SAA. I scoured the internet for weeks trying to make the right decision in a world that has so few answers. My wife & I happened to come upon this article in AAMDS.org under "Stories of Inspiration and Hope":
http://www.aamds.org/aplastic/inform...rkes_story.php
I was able to contact Vincent Burke and had amazing conversations with him. Like him, we chose the Cytoxan treatments at Johns Hopkins Hospital in Baltimore, MD. I believe they are the only hospital in the country treating SAA using hi-dose chemo therapy and they are having great success. It is basically the same regimen patients go through before a bone marrow transplant, minus the radiation.
Kathryn underwent 4 days of chemo in November 2008. After living out of the Ronald McDonald House for 3 months, we came back home and her counts have steadily increased and she is back to living a normal child's life.
In Selena Burke's case, this treatment cured her hepatitis as well so it was a double blessing for her. The other benefit of Hopkins' treatment is that the only medication patients are on after treatments is antibiotics to protect from infections. Once Kathryn's immune system was close to normal, she was off everything completely.
Here is one of the articles that convinced us to get a 2nd opinion at Hopkins:
http://www.hopkinsmedicine.org/hmn/S01/top.html
If you would like to talk, my email is:
bchenaille@comcast.net