[Sherri]

Hi Donna-

I am the other Mom Suzanne is speaking of. My daughter was much younger than yours when she was diagnosed. She was 5, but is now 7. You will get thru these initial feelings- it isn't easy- but you and your daughter will become so much stronger as a result.
My first question is - what are your daughter's counts and has she had a Bone Marrow Biopsy? What determined the diagnosis of MAA? When Annalyse was first diagnosed she had low normal RBC numbers (they just hadn't had a chance to drop yet) an ANC of 600 and a Platelet count of 31. (31000). She was borderline SAA but her marrow cellularity was 80%- so they didn't even diag Aplastic Anemia at first. Then her marrow went to 40% at her 2nd BMB 2 months later. That led to the MAA diag . However- she also had PNH , which will show a higher % of cellularity due to the PNH cells. So she was probably SAA or very close.
My dgtr sees Dr. Maciejewski at the Cleveland Clinic. Prior to ATG we discussed doing Dacluzimab (Xenapax) but decided on ATG. Dr. M told me last week that they did the Xenapax on a small MAA child recently - normal counts within a couple months. This is one thing for you to look at as far as treatment. This may be comforting- I remember Dr. M. saying that with MAA you don't "get on the mortality boat". You live with MAA- it's not life-threateni ng. You will find you are soon back to "normal" - it's just a different normal.