Robbie,
I am sorry to hear about Lillie. I know how upsetting it is when you find out that your other kids aren't a match. My daughter was the one with AA and my son wasn't a match either. Have they tested you or her mom? It doesn't happen very often that parents are a match but it is possible and in the case of children it seems that insurance companies frequently will consent to pay the typing costs.
A couple words of advice for you if you don't mind...
1. Ask questions and take notes and don't be afraid to go back and ask the same question again. As someone said you are Lillie's best advocate and nobody knows your little girl as well as you do. Don't be afraid to say no and look at other options.
2. Start the bone marrow registry search now. No, I am not saying you should consider transplant now, but I know many people who do IST and then need a transplant and have to wait for a search which can take many months. My daughter's search was just over 2 months and that was considered extremelly quick.
I know this is a scary, worrying time. If you have any questions for someone who has "been there, done that" feel free to send me an email at
suzanne_koopman@pacbell.net
Suzanne