[Wendy Beltrami]

Hello All,

Thought I'd check in and let everyone know what's going on with Grant.
Well, it's been 11 months since Grant had his second round of ATG (rabbit this time) and he is STILL transfusion dependent. Keep in mind, he was never transfusion dependent for the first 7 years of his AA so this has been quite a year for us.
We are still fighting a losing battle with Blue Cross trying to obtain Exjade for a cost that normal people can afford. His ferritin is about 1900 at last check and he (thanks to a special angel) has so far had a month's worth of Exjade.
The newest news is that a donor was found that is a 9/10 female with one pregnancy and a mismatch at A. Not a great choice.
We have always said that if we did ever go to transplant, we wanted to go to where they have done the most for children with AA.That is Children's Hospital of Wisconsin- as of June 2006 they have done 40 according to the NMDP statistical chart. We have spoken with Dr. Margolis by phone and after our initial conversation, he speculated that accepting this donor and moving to transplant may not be the best choice with Grant's current state of health.
(Transfusion dependent on prbcs every 3-4 weeks and platelets every 2-3 weeks with ANC usually over 1000). He may be a little too healthy to move to a 9/10 donor transplant at this time.
We have decided to take a trip to Cleveland to consult with Dr. Maciejewski and then hop over to Milwaukee to consult with Dr. Margolis.
Several things have been mentioned as possible next steps and after talking with these guys, we hope to have a clearer picture of which direction to take.
*another ATG, this time back to horse
*male hormones
*daclizumab
*rituximab
*campath
*hope for new trial to start with AMG 531 (this is exciting- it's for platelets!)
*do nothing
So, I ask that everyone keep us in your thoughts as we make this quick trip.
Grant's dx date was 12/4/98 so we just passed the 8 year mark. It seems like forever, and yet it seems like only yesterday that this bomb was dropped on us. It's hard to believe he has been dealing with this for over half his life.
It's also hard to believe that he is still so "healthy". He is a high school sophomore and singing in the choir and just being a teenager who happens to spend a couple of days a month in the hospital getting blood transfusions.

Wendy B.
mom to Grant/ age 15
dx 12/4/98 AA
ATG x 2