Hi Kim,
This is such a hard decision! I hope I don't confuse you more with my thoughts.
One thing that I have read about that could provide additional insight is the prognostic value of telomere length on AA patients treated with IST in terms of survival, relapse, and clonal evolution. I've heard they can measure lymphocyte telomere length at NIH, but perhaps they can do it at Fred Hutchinson as well. If you knew her telomere length was very short, it may influence your decision. Here's a general paper on a recent study. If you want, I can dig around for a more detailed study that I found a while back on this topic:
http://www.nih.gov/researchmatters/s...2010anemia.htm
Other random thoughts...
I've read studies comparing slow tapers to very slow tapers. The relapse rate was the same for the two groups. It was significantly higher for the faster taper group. So, if she previously had a slow taper, a very slow taper may not make much difference.
Kidney transplant patients are on cyclosporine for life. So, perhaps she could eventually do well on a much lower dose of cyclosporine, without removing it completely.
It's such a tradeoff between her young age now vs advancements in treatment options if you waited! Although she is covered through your insurance now, perhaps she could start her career in her chosen field more easily now and get her own medical coverage in addition to yours.
Here are some recent presentations from the Hutchinson center that may help you think of other questions:
http://www.fhcrc.org/research/diseas...lies-2010.html
Let us know what you learn! It seems almost inevitable that we fellow IST patients will be in your shoes someday
