Hi CurlyGirl,
I concur with Sally, that it sounds like a wonderful opportunity to try the trial with ATG/Cyclosporine/Eltrombopag at NIH. That eltrombopag seems to have success helping all 3 lines of blood in some AA patients:
Here is a great article on that with before and after pictures of bone marrow:
https://ash.confex.com/ash/2011/webp...aper36762.html
...I was hoping to get an appointment with Dr, Young at NIH myself, in particular concerning my ANC, but he reviewed my records and basically decided I was doing too well to see him right now. I guess that is a reason I can be happy with! All the same, it would be nice to have the opportunity to be seen by him. But I understand he and NIH are very busy and have to prioritize who they can see when.
That brings up a point about AA treatment though that NLJabbari and I have discussed on this forum. It seems once you have a response to treatment, even a partial response, a patient can kind of get stuck in a weird "holding pattern" where they are doing too well for further treatment, but still not doing as quite as well as we'd like.
I bring this up because if your son had a less than desirable response to ATG/cyclosporine, I am not positive NIH would provide an opportunity to try eltrombopag after that. They might, perhaps it is something you could ask them.
I understand it is a huge decision, but I think personally if I had the opportunity to try eltrombopag right off the bat along with my other treatment, there's a good chance I'd take it. But of course every drug has a risk, so it is not an easy choice.