Day 28
I don't know what day or time it is wherever, but it is late Thursday here. We received the results of John's endoscopic biopsy this afternoon and it shows a still mild case of GVHD. He starts prednisone in the morning to supress his new immune system, including the early signs of rejecting its new host. These steroids have side effects that can be worse than the disease, but there is no known, or at least proven, alternative, so there isn't much of a choice. Among the "side effects" are an increased risk of infection, emotional ups and downs, brittle bones, muscle loss, significant weight gain, and diabetes. There may have been more, but John and I had passed out by the time the list reached that point.
The conceptual problem with GVHD is the "do no harm" concern. You have replaced one potentially terminal disease, leukemia, with another. The only treatment is to supress the new immune system at the risk of relapse of the leukemia or infection. It is easy to understand why doctors with any heart might struggle with the issue. It is the extreme version of the country cure for a headache: Hit your thumb with a hammer until that hurts more (It's my Dad's joke, but Debbie will tell you I've tried it.)
The really sad thing from today is the way John was treated by his current doctor. John is only officially an adult, and one in a vulnerable situation, not to mention feeling pretty sick. His current doctor, who will remain nameless only because he hasn't bothered to introduce himself, spent about five minutes with John, asked a few questions and then said:
The conceptual problem with GVHD is the "do no harm" concern. You have replaced one potentially terminal disease, leukemia, with another. The only treatment is to supress the new immune system at the risk of relapse of the leukemia or infection. It is easy to understand why doctors with any heart might struggle with the issue. It is the extreme version of the country cure for a headache: Hit your thumb with a hammer until that hurts more (It's my Dad's joke, but Debbie will tell you I've tried it.)
The really sad thing from today is the way John was treated by his current doctor. John is only officially an adult, and one in a vulnerable situation, not to mention feeling pretty sick. His current doctor, who will remain nameless only because he hasn't bothered to introduce himself, spent about five minutes with John, asked a few questions and then said:
- Your biopsy shows signs of GVHD
- The physical pain you "apparently" have isn't consitent with the GVHD numbers,
so we are going to only half treat the GVHD and see if it changes how you feel.
Now, I admit that I am John's dad, but when the doctor then turned and left the room, John was the one who started crying, thinking he had been told he was lying. It was a hard and sad afternoon and evening trying to console my son over being hurt by his own doctor. I still have a lot of work to do to mend that wound.
