[KMac]

SAA Mom,

'Response Time' is such a tricky thing with ATG/Cyclosporine. It can happen so slowly, that you don't even know for sure it is happening until you look back on it. At least that was my case as it happened so slowly, I'll try to clarify with details below....

I received my last platelet transfusion 2 months post-ATG. I received my last RBC transfusion 3 1/2 months post-ATG. I recall being shattered that day, as I understood that if the ATG was going to work, it would probably work in the first 3 months. So a transfusion post 3 months felt like failure. But if only I had known that'd be my last transfusion, I sure would have felt better about it!

At 6 months post-ATG, my platelets were about 50, Hgb about 8.5, and my doctor felt my response was sub-optimal enough we were considering another round of ATG. He said it was unlikely to see significant gains 6 months post-ATG. Yet it wasn't until months 8-10 that my counts really started rising. My platelets hit normal around month 8, my Hgb went over 13 in month 10.

And my ANC/WBC response is still only partial. My ANC rises to about 2000 when I get sick (which I do only occasionally), then falls back down to 600 once I feel better.

I don't have a sibling donor. We tested my two brothers immediately upon my diagnosis and they did not match, but my hospital found several probably 10/10 matches for me on the registry. Now that we have went the immunosuppressive route though, we sure are hoping I can avoid a transplant.

I understand you frustration with differing opinions on whether a transplant is best for your son. I would think the protocol now that he has had ATG would be to wait 6 months or so to make a decision.

I don't have any sign of PNH or other issues in my Bone Marrow biopsies (I've had three, in which cellularity has climbed from 1% to 5% to 25%). Just straight aplastic anemia knock on wood!

I wish you and your son the best as you fight this thing. It is so hard to be patient for the treatment to work, but sometimes it seems patience is what is needed.