Day 83
This morning, Debbie and I dropped off some books and puzzles on the transplant floor John "lived on" at the University of Washington Hospital. As we entered, there was a sign announcing that it is rated the third best hospital in the country. We knew it was the best for AML transplants like John's, but that is a comforting addition to what we have known.
Today was the "written exam" portion of John's graduation tests. There was a class of three families this week, adding to the total of over 3500 living alumni. The "oldest" of the lot was "born again", so to speak, 35 years ago. Comforting numbers. Hey, I'd take that promise.
Graduation really will be more like parole. Johh will be followed closely for a year in conjunction with Emory. He has to see his parole doctor within a week of return to Atlanta for blood tests and weekly thereafter. He will be on at least one antibiotic for six months and one or more antivirals until May. At that time, he will be evaluated for vaccinations he may need and might tolerate. Some patients go on for years like that, many may go for days, weeks or more not even remembering all this, and some...
The general rules are that graduates should not work or go back to school for a year. I think part time work and a light college semester might be OK though. John will need to exercise some, which really means doing stretches while watching TV and must avoid crowds for as long as he is on immune suppressants. Lance Armstrong is just a superhero, we should all marvel over.
There is a long chart of don'ts that goes on for pages of fine print. One prohibits "spectator events and crowds", meaning 3 or more people, and seems to include church as a "spectator event." I told John they were probably afraid that someone might attend a snake-handling church.
I think John and I aren't yet together on how much parental (that is, cooking, cleaning and cash) care he will continue to need for a while. I can't say I blame him. Chemotherapy was probably less painful than living under the supervision of even someone as enlightened, caring and open-minded as me. I hope he doesn't happen to read this entry.
During class, we learned that John shouldn't have his teeth cleaned until May at the earliest. If he actually has to have dental care, a cross-country consultation of epic proportions will occur.
The list of chronic GVHD symptoms could have been read from some Poe novel, and half the patients develop one or more. Debbie started to slide down in her chair about half-way through the reading and since this blog could be seen by those of a tender age or fragile stomach, I won't offer the highlights. Even the list of things that could cause reactions is simply too long to relate. Just the rosy glow of a bit of sun could send "us" back to the hospital and set John back a long way.
One of the subtle things that occurs with some number of transplant patients is a change in skin color. Sometimes it fades and sometimes they will always have a "grey" sort of tan about them. I see it at least for now.
Of more concern to John than me is that GVHD sometimes causes hair loss. Unlike that which is cause by chemo, this kind is permanent. When John was young, I told him that his hair was his to do with as he wanted as long as he had it. Irony, I think, is the dark matter that the cosmologists search for to make the universe add up.
Talking about side effects and for anyone who might be in a family with a similar circumstance, there won't ever be another from my line to bear the name Cadenhead. I'm OK with that. We have more than enough people, good and bad, in this world as it is. I think John will be too, though he may not have focused on such questions yet. Besides, there are now adopted Cadenheads from all over the world, so he has more good examples than most to look to in what I hope will be a long life ahead.
I need to think about how to address it, but sometime soon it might be worth passing on some of the ups and free-fall downs that come with 21st Century families in sur-reality settings like ours. All this is a family disease and far too many suffer. Still, the sunset leaves a trail of stars and a promise for tomorrow, with the chance to make something more of it.
Shelley was more poetic, but no less pathetic. Still, there remains hope, tomorrow and life. GOOD night, for now.
Today was the "written exam" portion of John's graduation tests. There was a class of three families this week, adding to the total of over 3500 living alumni. The "oldest" of the lot was "born again", so to speak, 35 years ago. Comforting numbers. Hey, I'd take that promise.
Graduation really will be more like parole. Johh will be followed closely for a year in conjunction with Emory. He has to see his parole doctor within a week of return to Atlanta for blood tests and weekly thereafter. He will be on at least one antibiotic for six months and one or more antivirals until May. At that time, he will be evaluated for vaccinations he may need and might tolerate. Some patients go on for years like that, many may go for days, weeks or more not even remembering all this, and some...
The general rules are that graduates should not work or go back to school for a year. I think part time work and a light college semester might be OK though. John will need to exercise some, which really means doing stretches while watching TV and must avoid crowds for as long as he is on immune suppressants. Lance Armstrong is just a superhero, we should all marvel over.
There is a long chart of don'ts that goes on for pages of fine print. One prohibits "spectator events and crowds", meaning 3 or more people, and seems to include church as a "spectator event." I told John they were probably afraid that someone might attend a snake-handling church.
I think John and I aren't yet together on how much parental (that is, cooking, cleaning and cash) care he will continue to need for a while. I can't say I blame him. Chemotherapy was probably less painful than living under the supervision of even someone as enlightened, caring and open-minded as me. I hope he doesn't happen to read this entry.
During class, we learned that John shouldn't have his teeth cleaned until May at the earliest. If he actually has to have dental care, a cross-country consultation of epic proportions will occur.
The list of chronic GVHD symptoms could have been read from some Poe novel, and half the patients develop one or more. Debbie started to slide down in her chair about half-way through the reading and since this blog could be seen by those of a tender age or fragile stomach, I won't offer the highlights. Even the list of things that could cause reactions is simply too long to relate. Just the rosy glow of a bit of sun could send "us" back to the hospital and set John back a long way.
One of the subtle things that occurs with some number of transplant patients is a change in skin color. Sometimes it fades and sometimes they will always have a "grey" sort of tan about them. I see it at least for now.
Of more concern to John than me is that GVHD sometimes causes hair loss. Unlike that which is cause by chemo, this kind is permanent. When John was young, I told him that his hair was his to do with as he wanted as long as he had it. Irony, I think, is the dark matter that the cosmologists search for to make the universe add up.
Talking about side effects and for anyone who might be in a family with a similar circumstance, there won't ever be another from my line to bear the name Cadenhead. I'm OK with that. We have more than enough people, good and bad, in this world as it is. I think John will be too, though he may not have focused on such questions yet. Besides, there are now adopted Cadenheads from all over the world, so he has more good examples than most to look to in what I hope will be a long life ahead.
I need to think about how to address it, but sometime soon it might be worth passing on some of the ups and free-fall downs that come with 21st Century families in sur-reality settings like ours. All this is a family disease and far too many suffer. Still, the sunset leaves a trail of stars and a promise for tomorrow, with the chance to make something more of it.
Shelley was more poetic, but no less pathetic. Still, there remains hope, tomorrow and life. GOOD night, for now.
