[Lisa V]

I agree with the others that consulting with a transplant doctor before making any decisions would be the wisest thing. They really do have a better perspective on the issues involved than the average hem/onc.

I remember our doctor walking in one time a few months after Ken's second ATG and stating that in his opinion we'd "waited long enough", and that he was going to send his files off to the City of Hope team for evaluation. This came as something of a shock to us, as he had been showing gradual improvement, and we've always wanted to avoid going to transplant if at all possible. He even said he "couldn't imagine" them not agreeing with him. Well, at the next appointment he told us that CoH had reviewed his case and felt that a BMT was not appropriate at this time. End of story, no further comment. Yay!!!!

Ken's counts have continued to improve, so I feel it was the right call. On the other hand, there is the cyclosporine dependency issue, which is a concern. I don't think any of us here can predict whether or not Shauna will be able to successfully discontinue the cyclo long-term or not. The trend now seems to be towards longer, slower tapers, along with the growing realization that some people will have to stay on it indefinitely. This is all fairly new thinking, though, and medical opinions continue to change as they learn more.