Hi Robbie,
Sorry to hear about your daughter. You can try to have it both ways, by asking the team at Barnes Jewish to have Dr. Margolis as a consultant. Other thing to keep in mind is not to get too excited about the transplant possibility, there is no guarantee about a sibling match (although chances are high with 4 kids). Either way, you should prepare yourself emotionally for a long journey.
You might also try to contact Valerie Loughran, her son Bobby was diagnosed with AA and they are treated at Barnes Jewish. She does not visit here often, she posts on the Aplastic Central forum.
http://aplasticcentral.com/test/toas...n=topics&fid=2
www.caringbridge.org/visit/bobbyloughran
The following I copy/pasted from an old posting that I wrote on Aplastic Central:
Couple of things about supportive care:
1. You want to keep the transfusions to an absolute minimum! The less, the better, since she can become alloimmunized (developing antibodies)! Every patient is different, but general accepted safe numbers are hgb 7 and plt between 5 and 10.
2. You might want to request fresh blood product (especially for plateles). A bag of platelets has a life shelf of about 5 days, if you receive one that is 4 days old is not going to last her long! Also, platelets should be preferably from a single donor (not pooled donors), since pooled donors increase the alloimmunization risk. All blood products should be irradiated.
3.Very important, ask about CMV negative products (not CMV safe). There is a post "CMV negative blood", use the subject in the search feature of the forum (Aplastic Central) to find it, that explains in detail the issue.
You cannot talk to the blood bank, but if you talk to your doctor and explain exactly your concerns, he/she can contact the blood bank and ask for special handling of the blood products. There should be a standing order in the chart also, so this issue does not need to be brought up again with every transfusion!
About treatment:
1. First line of treatment for children is bone marrow transplant if she has a matched sibling donor.
2. Second line of treatment is IST (immunosupressive treatment with ATG/cyclosporine). The response rate (if there is one) varies from 4 to 6 and sometimes 9 months.
3. If IST fails you are in a grey area, depending on a multiple of factors you might go for a second round of ATG or you can go for a transplant from an unrelated donor.
And finally, some piece of advice.
1. Try to prepare yourself and your family emotionally for a LONG ordeal. This is NOT going to go away in a month! However, think positive: AA can be beat and is has been beaten! Positive thinking does wonders when coupled with knowledge!
2. About knowledge: try to learn as much as possible about this disease. Read the postings on this forums or different medical articles out there. This might prove difficult, but I know people that now can called themselves "experts" and started out with no background at all! If you post your e-amil address on the forum, I can sent you couple of relevant articles to read, in particular a 2005 review article about AA in children that is quite straightforward and an excellent source of info. Even if you don't understand everything, you can still get the relevant info and then ask your doctor.
3. Stay away from illness! Even if she's not neutropenic, any viral infection can literally knock down her counts. Try to be proactive, avoid crowds, wash hands, make sure her friends don't have a cold, etc. You don't want to get ANYTHING if possible, just stay healthy!
Sandra