Thursday, October 1, 2009

Tom is doing much better today. I arrived at the hospital around 8am and found him sleeping. He awoke shortly after I walked in and said he had slept ok except for the occasional "Mr. Carter, I have to take your vitals now" from the nurse. Other than a mild headache he felt alright. He told the nurse that he was a "7" on a scale of 0-10. He was given a small dose of morphine...fun, fun!

So, he was a tad drowsy but not too bad. He was able to carry on an articulate conversation, just a little slower. His father visited and that cheered him up.

A while later Tom ate his lunch which included strawberry shortcake with the reddest of red syrup on top. He finished, pushed his tray away, and the next thing I knew I heard him sleeping. All the time, I had not looked at him because I was reading. When I finally looked at him, his chin was on his chest and he was asleep sitting up in his hospital bed. His lips were as red and glossy as if he were wearing cherry lip gloss. It was kind of funny.

A couple of doctors visited today on separate occasions - a general internist and a doctor from the transplant clinic. The general consensus between the two was that Tom has gvhd-cns (which we already knew) - that stands for graft versus host disease of the central nervous system. Gvhd is common among stem cell transplantees, however gvhd of the central nervous system is rare. Gvhd occurs when either the donor's cells attack Tom's body (because it is foreign) or Tom's body rejects the donor's cells for the same reason. In Tom's case, the donor's cells are attacking his brain.

The last MRI, done several weeks ago showed various lesions of white matter around his brain - this is called white matter disease. The MRI done today shows that some of the white matter lesions have decreased in size but one area has expanded. This is a sign of gvhd-cns . For now, the BMT doctor (bone marrow transplant) is recommending that Tom increase his current dose of steroids, called Prednisone which is an immunosuppresent(funny thing - I thought steroids made one's body powerful and that's why body builders take them). Also, they may be increasing his dose of Cellcept, a chemo drug which helps ward off gvhd.

So I've pondered all my scribbled notes for a few hours, and what I think is that his gvhd is expanding in his brain therefore they want to increase the Cellcept to counteract that. Also, to make his body less able to resist the donor cells they are increasing the steroid. It's all crazy...like a dog chasing it's tail.

Tom will be spending another night in the hospital. We're still waiting for the neurologist to visit. He will have the most accurate diagnosis and immediate plan for Tom.

2 comments:

Steve said...

Thanks for the update. Still sounds scary, but better to have a sense of what's wrong. Hang in there.

Anonymous said...

Thanks for the update. I'm still apprehensive but know that I must have faith in the doctors. Big hugs to all of you.
Elise