day 82
The preliminary bone marrow test resultsfor John show NO leukemia. That's the news that matters. They took a skin biopsy in the process, which I've been tending to the care of. It shows some evidence of : "subclinical" GVHD. If you ask enough ignorant questions, that translates roughly to a potential for future chronic problems, but no symptoms to report for now. If you search the Internet for diseases with names and no symptoms, you might find that name along with some others with more humorous ones, all of which come down to something worth smiling, if not laughing over.
John's blood counts are mixed these days, which is mostly good as he transitions from the initial drug treatments to longer term watchfulness. Some are up, others down, none "normal" but all well, if you will. There is some evidence of bone density loss from the steroids, but nothing to worry over. His electrolytes remain low, but well enough along that John was able to strike a deal to stop IV fluids if he could increase his magnesium intake another 50%. If that works, they might be able to remove his Hickman line before we leave.
Next week, John should be able to start the 20 week process of tapering his FK 506 treatments, which supress his immune system and the risk of GVHD. We will have a class Wednesday on recognizing and treating chronic GVH. The symptoms are subtle - things like changes in appetite, weight loss, intolerance for some foods, hardening of skin, loss of joint flexibility, dry eyes and just about anything you can imagine. He will be on Acyclovir and some other drugs for a year and will have weekly blood and other tests. It is all very much the medical version of Martha Stewart's house arrest.
John's mother returned from vacation and attended today's session with the doctor. She ws intent on finding out when John would be able to swim in the lake again and didn't seem to get that he still has only half of an immune system and another person's at that. Having him under my care for this time has been something of a comfort that I will have to learn again to let go of, hopefully to one able to make good judgments for himself.
We got a call this evening from my Aunt Caroline, my mother's younger sister. She and her husband will be passing through this week and we are planning to connect on Thursday. It has been about 20 years since I have seen them. I've aged a lot, but I don't believe they have.
Debbie is working so hard at being strong through all of this, but living in neither of two worlds is taking its toll on her being. John has a year or more, perhaps a lifetime of recovery ahead. Anyone with a heart, and Debbie has a large one, will need possibly as long to find the pulse of a normal life again.
I read online that Amelia, one of John's online friends and an AML patient is having platelet problems, made worse by not tolerating transfusions. There is too much that hurts too many in what we try to call life to ever feel sorry for yourself and nothing ever seems - I was going to say fair - to even make sense.
John's blood counts are mixed these days, which is mostly good as he transitions from the initial drug treatments to longer term watchfulness. Some are up, others down, none "normal" but all well, if you will. There is some evidence of bone density loss from the steroids, but nothing to worry over. His electrolytes remain low, but well enough along that John was able to strike a deal to stop IV fluids if he could increase his magnesium intake another 50%. If that works, they might be able to remove his Hickman line before we leave.
Next week, John should be able to start the 20 week process of tapering his FK 506 treatments, which supress his immune system and the risk of GVHD. We will have a class Wednesday on recognizing and treating chronic GVH. The symptoms are subtle - things like changes in appetite, weight loss, intolerance for some foods, hardening of skin, loss of joint flexibility, dry eyes and just about anything you can imagine. He will be on Acyclovir and some other drugs for a year and will have weekly blood and other tests. It is all very much the medical version of Martha Stewart's house arrest.
John's mother returned from vacation and attended today's session with the doctor. She ws intent on finding out when John would be able to swim in the lake again and didn't seem to get that he still has only half of an immune system and another person's at that. Having him under my care for this time has been something of a comfort that I will have to learn again to let go of, hopefully to one able to make good judgments for himself.
We got a call this evening from my Aunt Caroline, my mother's younger sister. She and her husband will be passing through this week and we are planning to connect on Thursday. It has been about 20 years since I have seen them. I've aged a lot, but I don't believe they have.
Debbie is working so hard at being strong through all of this, but living in neither of two worlds is taking its toll on her being. John has a year or more, perhaps a lifetime of recovery ahead. Anyone with a heart, and Debbie has a large one, will need possibly as long to find the pulse of a normal life again.
I read online that Amelia, one of John's online friends and an AML patient is having platelet problems, made worse by not tolerating transfusions. There is too much that hurts too many in what we try to call life to ever feel sorry for yourself and nothing ever seems - I was going to say fair - to even make sense.
Randy,
We just wanted to let you know we're still thinking about you and praying for John.Hang in there.
Joe and Lucy
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7:21 PM