latest update - Dartmouth visit March 5-9

The following is an update on me following my most recent visit to Dartmouth this past Thu. & Fri., which was extended through Monday:

It now appears that though I am well past the point where a drug reaction would still be having any effect on my body and my skin had cleared up, it is now headed back the other way and beginning to peel again. They are becoming more suspicious that the skin issues, though they may have been instigated by a drug reaction, are now chronic GVHD (graft-vs-host disease), and so they ran some additional tests (more than I care to count) during the day Friday and more on Monday (when I was just supposed to meet with the doctor and learn his recommended plan of action) as a result of seeing the changes between Friday and Monday.

While the PET scan results came back and show no signs of cancer anywhere, it also showed 2 cracked ribs on each side – the left ones almost healed but the right ones pretty fresh. They assume this is from the violent coughing fits I have been having. My bone marrow biopsy results won’t be back until later this week, but they don’t expect anything wrong there with the clean PET scan.

They did find a positive result to the Epstein-Barr virus, but are as of now unsure what to do about it, as there is no treatment for it and the only thing they can do is eliminate my immune suppressant drugs, which may make the skin GVHD wore, as the treatment for that would involve increasing the immune suppressants. The nurse practitioner is to call late Wed. afternoon with more test results, and hopefully a recommended course of action for the EBV and GVHD (I am beginning to feel like a display for alphabet soup!).

Given all of the above, I will most likely not be in to church for any meetings or such at all this week, and would hope that whatever drug treatment plan is given tomorrow makes a difference by next week. Here’s how you can best pray for us this week:
1) Pray that at least some of the tests are conclusive in their findings, and that the doctor has the wisdom to make the right diagnosis and get me on the proper treatment plan.
2) Pray that we would be able to do whatever treatment he decides on here at home in Maine, and not have to move back to NH to have anything done at Dartmouth, as it has been mentioned a couple of times.
3) Pray for continued frustration with the situation for both Lisa and I. I really don’t want to be admitted again to Dartmouth, as there’s just too many negative feelings and issues to deal with (memories, food, attitudes, etc.), and we are beginning to feel like we could be doing a lot more of these tests and such here in Maine than down in NH, extending every one of our monthly visits and running me down physically and emotionally. Pray that we would be able to keep our heads headed in right direction.
4) Pray that my mouth, which had been getting better, but now has sores all over it again, would begin to heal once again and completely clear up. For the time being, I am back to a liquid and soft foods (mac & cheese, yogurt, pudding, etc.) diet, and have very little taste as the sores have now spread to my tongue, making even talking difficult much of the time.
5) Praise – Even though my mouth is now worse than it was, God saw fit to allow me to have no mouth pain for some time surrounding last Sun. so that I could share in the service, and I have heard from over a dozen people – both within the church family and outside it – that my notes and resource list have already been helpful to many on a number of issues. God is getting glory, even in my weakness!

Thanks for the many continued prayers, support, & encouragement so many of you are sending our way - we really need them.