It's been a very long time since I've posted but thought I'd pop in and say hello. My son Grant, dx with AA on 12/4/98 underwent a MUD BMT on 9/11/08, rejected that one, had a PBSCT using the same donor on 10/23/08 which engrafted but resulted in Grade IV GVHD and then had a "BOOST" on 8/11/09 which finally enabled him to be transfusion independent. It's been a loooong haul but we are finally seeing the light at the end of the tunnel. His counts are hovering in normal range for the first time in over 11 years and now our focus has turned to managing the collateral damage from the BMT.
I invite all of you to read our very long story on our CaringBridge
http://www.caringbridge.org/visit/grantbeltrami
Today Grant had his very first therapeutic phlebotomy to begin whittling away at his severe iron overload- the result of 241 units of red cells. The last time we checked, his ferritin level was over 7000. Yikes.
We traveled through some really dark days in 2009. I want to pass on that BMT is a tough, tough journey and recovery continues to be challenging as well. Parents, spouses, caregivers... you can never be complacent. Always question, always research and always trust your instinct! Finding a doctor with AA experience is going to be your most important step.
Wendy B
Mom to Grant... now age 18!