55 Todays Toward Tomorrow
Whenever your child calls, two thoughts ring simultaneously - appreciation and worry. Yesterday, John called after his bi-weekly doctor's visit. After several "Can you here me nows," which you hear on the streets now more often than "Good morning," he asked for help in understanding the prescription for Prednisone he had just filled.
As I tried to back the conversation up a few steps with him, the doctor called on my other phone with some additional instructions. When we sorted it all out, my worries about John's stomach problems seemed to be shared by his doctor. The prescribed a low dose of steroids for him to try over the weekend to see if he improved. If he does, he most likely has developed chronic GVHD, and it can be treated with the drug. If not, he may need more or he may have some other problem, an ulcer perhaps.
John's white blood counts are trending down and his liver numbers up, neither a good sign, but not as alarming as high white counts, which would hint at a relapse. GVHD, for all that is bad about it, does seem to fend off a relapse, although it finds organs to attack as some form of exercise in the meantime. For all the wonders of medicine today, they still have nothing better than steriods to deal with GVHD, and the list of side effects are long and do not include being able to play Major League Baseball.
The connection between Emory and the long-term care group in Seattle does seem to be working well and a help. By the end of the day Friday, they had consulted and agreed to take the next step in reducing one of John's immune suppressant's on the 25th and tentatively decided to increase an antibacterial drug. It is comforting to have that much experience and care from both groups working for him.
I've begun to see all this as the new normal, too much like the natural disaster news of the world, a thought always lurking in the mind. It has to be a burden for John to live wondering what might go wrong inside today and not be able to schedule tomorrow. He's quiet about it.
Much else goes on around us - house painting, aging dogs, broken toes, work and more at work. It goes on around you and you do your part, but you aren't quite there all the same. Funny, but not being able to think about tomorrow makes today sort of hard. Still, doing things seems to help, and it's time for that.
As I tried to back the conversation up a few steps with him, the doctor called on my other phone with some additional instructions. When we sorted it all out, my worries about John's stomach problems seemed to be shared by his doctor. The prescribed a low dose of steroids for him to try over the weekend to see if he improved. If he does, he most likely has developed chronic GVHD, and it can be treated with the drug. If not, he may need more or he may have some other problem, an ulcer perhaps.
John's white blood counts are trending down and his liver numbers up, neither a good sign, but not as alarming as high white counts, which would hint at a relapse. GVHD, for all that is bad about it, does seem to fend off a relapse, although it finds organs to attack as some form of exercise in the meantime. For all the wonders of medicine today, they still have nothing better than steriods to deal with GVHD, and the list of side effects are long and do not include being able to play Major League Baseball.
The connection between Emory and the long-term care group in Seattle does seem to be working well and a help. By the end of the day Friday, they had consulted and agreed to take the next step in reducing one of John's immune suppressant's on the 25th and tentatively decided to increase an antibacterial drug. It is comforting to have that much experience and care from both groups working for him.
I've begun to see all this as the new normal, too much like the natural disaster news of the world, a thought always lurking in the mind. It has to be a burden for John to live wondering what might go wrong inside today and not be able to schedule tomorrow. He's quiet about it.
Much else goes on around us - house painting, aging dogs, broken toes, work and more at work. It goes on around you and you do your part, but you aren't quite there all the same. Funny, but not being able to think about tomorrow makes today sort of hard. Still, doing things seems to help, and it's time for that.
