Hi Cindy,
My son Ethan was diagnosed December of 08 when he was 3. He is 5 now too and had his transplant at City of Hope in Duarte, CA just this last November.
We talked with a few doctors, but the most easily accessible and pleasant was Dr. David Margolis of Children's Wisconsin. Link attached:
http://www.chw.org/display/PPF/DocID...v/1/router.asp
Also - I remember picking the brain of a David Loeb at Johns Hopkins where they have a different High Cytoxan regimen that they follow before they decide to go to transplant.
We already knew the standard protocol for transplant from the doctors we had talked to in our area (Los Angeles). These two doctors had a different take on what that protocol should be.
Please feel free to contact me (jen.barrios@sbcglobal.net). I know I looked high and low for kids who were going through this at such a young age. There aren't a ton, but we are out here.