Day 91
We met today with the head of long-term care. His assessment was good, actually "extraordinary" was the word, but doctors are good at making that into a cautious term. John has no signs of leukemia. The stem cells in his marrow are basically all donor cells and are healthy. His platelets remain low which is something to monitor, but there are plenty of patients that have to receive platelet infusions periodically for years. It's sort of like that tire that has a slow leak. You add air once a month or so, but don't need to fix it.
John's skin biopsy showed low signs of GVHD, which will be the long-term thing to monitor, and he will need to avoid things like the sun or anything that might affect his digestive system. Little things that we don't think about, could be significant for him. I asked a lot of questions, but in the course of an hour, there were no surprises. We are to return back next May for a follow-up and, in the meantime, the clinic here will receive regular reports and respond to questions from us or Emory. There is actually an entire floor of people here that do nothing but that.
John did agree to participate in a long-term clinical trial to help decide the best anti-viral medication for patients recovering from a transplant. I think that will be a good thing, because the clinic here will continue to get weekly blood samples to monitor.
My dad has seen to resurrecting our cars from months of sitting in the rain forest that is our driveway. John's needed a new battery, and it was a great help not to be greeted with problems like that when we get back. Debbie is living with the first wave of boxes that have returned and the next will arrive about the time I do.
Debbie's parents are on their way back to Florida and will spend a few days this week in Atlanta. They have been very caring through these months and I wish I could be there to say thanks. If the hurricane that is eyeing South Florida gets in the way, they just might be holed up in Atlanta still when we return.
Debbie and I have been living on adrenaline for nine months now. We are both tired, but she has been the first to sense and to struggle with the transition to a "normal" life, with a still half-sick son to watch after. The emotional after-effects of a long near-death experience are hard on everyone. In her case, a lot of the pain comes from caring too much. She was the first person to reach him in the doctor's office when he was first diagnosed and has done much more for him than any mother, even his own, to see that he received the best chance at a new life that anyone anywhere could receive.
John, I think, is dealing with the unfairness of life, which manifests itself in a constant, brooding state of general anger. It puts those around him off, and at the slightest opportunity he lashes out, especially at those who are close, because they care. He did it to me tonight, first complaining about dinner being late, and then later refusing to eat, criticizing me and storming out. That was mild compared to the way he has treated others.
There are clinical and also old-fashioned names for that kind of behavior. I recognize too much of whatever it is from his other parent. Why does doing good for someone make him turn on you? It was around in Aesop's day. I've lived on hope this long, I hope now that he might grow up a bit.
John's skin biopsy showed low signs of GVHD, which will be the long-term thing to monitor, and he will need to avoid things like the sun or anything that might affect his digestive system. Little things that we don't think about, could be significant for him. I asked a lot of questions, but in the course of an hour, there were no surprises. We are to return back next May for a follow-up and, in the meantime, the clinic here will receive regular reports and respond to questions from us or Emory. There is actually an entire floor of people here that do nothing but that.
John did agree to participate in a long-term clinical trial to help decide the best anti-viral medication for patients recovering from a transplant. I think that will be a good thing, because the clinic here will continue to get weekly blood samples to monitor.
My dad has seen to resurrecting our cars from months of sitting in the rain forest that is our driveway. John's needed a new battery, and it was a great help not to be greeted with problems like that when we get back. Debbie is living with the first wave of boxes that have returned and the next will arrive about the time I do.
Debbie's parents are on their way back to Florida and will spend a few days this week in Atlanta. They have been very caring through these months and I wish I could be there to say thanks. If the hurricane that is eyeing South Florida gets in the way, they just might be holed up in Atlanta still when we return.
Debbie and I have been living on adrenaline for nine months now. We are both tired, but she has been the first to sense and to struggle with the transition to a "normal" life, with a still half-sick son to watch after. The emotional after-effects of a long near-death experience are hard on everyone. In her case, a lot of the pain comes from caring too much. She was the first person to reach him in the doctor's office when he was first diagnosed and has done much more for him than any mother, even his own, to see that he received the best chance at a new life that anyone anywhere could receive.
John, I think, is dealing with the unfairness of life, which manifests itself in a constant, brooding state of general anger. It puts those around him off, and at the slightest opportunity he lashes out, especially at those who are close, because they care. He did it to me tonight, first complaining about dinner being late, and then later refusing to eat, criticizing me and storming out. That was mild compared to the way he has treated others.
There are clinical and also old-fashioned names for that kind of behavior. I recognize too much of whatever it is from his other parent. Why does doing good for someone make him turn on you? It was around in Aesop's day. I've lived on hope this long, I hope now that he might grow up a bit.
it seems you feel very hurt because of john's actions. would it help to step back and consider if it is really entirely your fault? that perhaps john is angry at the world, nervous about coming home, etc and cannot see yet how much of yourself you have put into his care? i know it hurts and does not seem fair, but maybe after the feelings have subsided, reevaluate the situation with a bigger splash of objectivity? that maybe john will be able to thank you in the future once he also has processed what these entire 9 months have meant. this message was not meant to offend, only to provide another perspective if it was needed.
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11:16 AM