Our transplant doctor has responded to our key questions:

" Tapering her prednisone/tacro will hopefully rescue at least some of her graft, provided it is done fairly quickly over the next 3-4 weeks. It would be important to repeat the donor/host blood and Jak-2 tests sometime in late October or November, and we could potentially doing so by having a blood sample shipped to us (i.e. she would not necessarily have to come). Hopefully that will show a reversal of the trend.

Her prognosis is unclear at the moment and will ultimately depend on what happens in the next few weeks/months. That said, it is clearly significantly worse than it was just six months ago. Unfortunately, in view of her general condition, a second transplant is not a realistic option (i.e. too risky), but other treatment options can be discussed, and they would most likely be done locally."

This means that we have to let Suzie suffer GVHD to an even greater degree. This is hard because it leaves marks on her skin and it affects her vision and her joints It hit so hard last April that she was unable to sew, or hold cards in her hands. Even eating was a challenge. If the GVHD gets too aggressive, her kidneys and liver are exposed to the degree that it could be life threatening. But doing nothing exposes her to the cancer, which is also life threatening.

Our prayers are that the donor cells make a comeback and that our doctors are able to control the negative aspects of GVHD.