Day 125

We got a bit of a hint that what we would hear at our appointment this afternoon was going to be hard to hear. When we checked in for the visit with the GI doctor today we saw Eileen, our RN. She mentioned that they have been talking about us and when we asked if it was good or bad she sighed a bit and said; "I'll just leave it at that!"

The GI doctor set up an appointment for a scope tomorrow. The liver function is above normal and has been on a steady incline. They wonder if it is due to GVHD, but need to know more.

Our summary conference with the doctor and RN later told us what was behind the sigh we heard when we saw Eileen earlier today. They really hoped to be sending us home, but want to keep us here for a few more weeks. WHAT? WHY? We didn't say that, but we were sure thinking that. Here is the answer:

They are watching the chimerisms, which tell how much is Dennis and how much is Terry. They are concerned with the results of the tests they watch most on that. I will refer to those two tests as M cells and T cells. The M cells are 95% donor, and that's good. The T cells, which are the most important in this protocol, are at 67% donor and trending downward. This is not good. They need to watch that and learn if it will continue to trend down or take a turn upward, or even just plateau. The downward trend is the concern. They will need to act on that at some point if it continues to decline.

I already mentioned the liver function problem. They are increasing the dose of his cyclosporine and hoping that will help.

The PTLD is gone, but at risk of coming back with the changes in the cyclosporine.

So all this means that things are unstable right now and it would be safer for Terry to stay here than to return to his oncologist at home. It is also better for the physicians in charge here to have him here instead of taking the word of another doctor and trying to work with Terry from a distance. We understand completely and we want to do what is best for Terry. That is why we came here in the first place.

They were going to pull the Hickman Line tomorrow, but that will not happen now. Our schedule has been revised again. He will have an endoscopy and Flex Signoidoscopy tomorrow and hope to have the results in time for our clinic visit Thursday.

Now for some good news ... by the end of our visit today the doctor had decided that since our hometown is as close as it is, they could let us go home for several days between visits. We aren't sure yet, but they (and we) are hopeful that we can come home this weekend and return for Tuesday blood draw and clinic visits. After finding out if things are okay we can then return home again and keep this type of routine going for as long as needed. We are crossing our fingers and saying our prayers and hoping we won't have to disregard everything I just wrote and give other disappointing news after our appointment Thursday.