Day 23
Today was a busy day for all concerned. John’s counts were down to .6, but there was serious talk of releasing him around Wednesday or Thursday of this week. The downside of his early “parole” is that he would have to be back for about 6 days of his first “consolidation” chemo for the Christmas holidays. After that and assuming no complications, he would expect to be back every 3 to 4 weeks for chemo until his transplant could take place. More on all that in a moment.
Dan and Barry visited with John this morning and gave him a paint by numbers set. Actually, the advanced version of such things is one of the latest cool things to do and John jumped right in, because the opportunity for artistry without enormous creative effort was just what he needed. Elizabeth and Saba came a bit later and John commented later how much he appreciated their visit.
Elizabeth teaches international nursing at Emory and has been a helpful resource for us, so it was particularly timely that she was with us when Dr. Chai (rhymes with “Thai”) came in. We had been waiting for him from mid-morning until 3, when he responded to a page we finally had sent, but you get used to a lot of things in the hospital.
The doctor never actually apologized for yesterday’s problems, but he did genuinely try to answer as many questions as he could, and we asked a lot. An unrelated bone marrow donor transplant is a complicated process that they are still trying to understand (I wish I could say perfect). There are four classes of antigens (A,B,C, and D) with about 200 subcategories of proteins that are currently assessed. Few candidates have had the current full analysis done, so the likely donors will need an up-to-date “HSA” analysis performed to see if they match John’s profile. They learn about more things to check all the time. In any event, the process is still largely and art practiced with your fingers crossed, but John’s case seems to be among the most hopeful within this realm of AML. His cytogenic (DNA) tests showed none of the known abnormalities (positive or negative), which is basically good, though it basically means they haven’t identified his specific mutation yet. In assessing risks of reoccurrence, they also consider the state of one’s non-cancerous white blood cells. John’s have been described, or diagnosed, as abnormal, though with differing labels. Chemotherapy does not affect these problems, and the “dysplasia” found to date makes it important that we proceed to transplant as soon as possible.
Dr Chai has a genuinely helpful demeanor and is the first person we have found willing to discuss the complexities of leukemia and its treatment, even though he has been practicing here only about 6 months. He explained that only about 60% of unrelated BMT’s (bone marrow transplants) are successful today. Patients with John’s current diagnosis would very clearly need to undertake a transplant. If his dysplasia were to disappear, and given his lack of known genetic mutations, his need might be less clear.
Dr Chai trained in Seattle and said that it was the best place, by far, to have an unrelated BMT. He even said that he would go there if he were in John’s shoes. He listened to our concerns over John’s treatment to date, commented with sincerity, but ultimately did not offer much comfort that Emory would satisfy our needs.
John has received mixed messages, since he entered the hospital, on the severity of his leukemia. His mother has said that his is the easiest form of cancer to cure. His doctors have each avoided talking about likely outcomes, other than to say that a transplant is probably going to be needed. Today was the first time that anyone but me ever raised the possibility that John might die. Dr. Chai used the word “mortality” several times.
As Dad and Dottie know, Debbie and I had intended to go to the Cox legal holiday party this evening. We were dressed to go when one of John’s friends called and said he was worried about John, explaining that he had talked to John on the phone and he seemed to be crying. Debbie and I went straight to the hospital. Fortunately Dad and Dottie had gotten there before us and their presence seemed to have helped calm John. Debbie and I stayed until late, sat and talked with John. He has been remarkable about dealing with each day and has mostly left to me the process of planning ahead. He is uncomfortable with the idea of traveling for treatment, but has begun to understand that there are large differences in the outcome of cases from clinic to clinic. We agreed that the best thing to do was to learn as much as we could before we made any decisions.
After a long time, we were able to calm John enough for him to sleep. I’m sure there was more that occurred today, but it is late and I should sleep as well.
Dan and Barry visited with John this morning and gave him a paint by numbers set. Actually, the advanced version of such things is one of the latest cool things to do and John jumped right in, because the opportunity for artistry without enormous creative effort was just what he needed. Elizabeth and Saba came a bit later and John commented later how much he appreciated their visit.
Elizabeth teaches international nursing at Emory and has been a helpful resource for us, so it was particularly timely that she was with us when Dr. Chai (rhymes with “Thai”) came in. We had been waiting for him from mid-morning until 3, when he responded to a page we finally had sent, but you get used to a lot of things in the hospital.
The doctor never actually apologized for yesterday’s problems, but he did genuinely try to answer as many questions as he could, and we asked a lot. An unrelated bone marrow donor transplant is a complicated process that they are still trying to understand (I wish I could say perfect). There are four classes of antigens (A,B,C, and D) with about 200 subcategories of proteins that are currently assessed. Few candidates have had the current full analysis done, so the likely donors will need an up-to-date “HSA” analysis performed to see if they match John’s profile. They learn about more things to check all the time. In any event, the process is still largely and art practiced with your fingers crossed, but John’s case seems to be among the most hopeful within this realm of AML. His cytogenic (DNA) tests showed none of the known abnormalities (positive or negative), which is basically good, though it basically means they haven’t identified his specific mutation yet. In assessing risks of reoccurrence, they also consider the state of one’s non-cancerous white blood cells. John’s have been described, or diagnosed, as abnormal, though with differing labels. Chemotherapy does not affect these problems, and the “dysplasia” found to date makes it important that we proceed to transplant as soon as possible.
Dr Chai has a genuinely helpful demeanor and is the first person we have found willing to discuss the complexities of leukemia and its treatment, even though he has been practicing here only about 6 months. He explained that only about 60% of unrelated BMT’s (bone marrow transplants) are successful today. Patients with John’s current diagnosis would very clearly need to undertake a transplant. If his dysplasia were to disappear, and given his lack of known genetic mutations, his need might be less clear.
Dr Chai trained in Seattle and said that it was the best place, by far, to have an unrelated BMT. He even said that he would go there if he were in John’s shoes. He listened to our concerns over John’s treatment to date, commented with sincerity, but ultimately did not offer much comfort that Emory would satisfy our needs.
John has received mixed messages, since he entered the hospital, on the severity of his leukemia. His mother has said that his is the easiest form of cancer to cure. His doctors have each avoided talking about likely outcomes, other than to say that a transplant is probably going to be needed. Today was the first time that anyone but me ever raised the possibility that John might die. Dr. Chai used the word “mortality” several times.
As Dad and Dottie know, Debbie and I had intended to go to the Cox legal holiday party this evening. We were dressed to go when one of John’s friends called and said he was worried about John, explaining that he had talked to John on the phone and he seemed to be crying. Debbie and I went straight to the hospital. Fortunately Dad and Dottie had gotten there before us and their presence seemed to have helped calm John. Debbie and I stayed until late, sat and talked with John. He has been remarkable about dealing with each day and has mostly left to me the process of planning ahead. He is uncomfortable with the idea of traveling for treatment, but has begun to understand that there are large differences in the outcome of cases from clinic to clinic. We agreed that the best thing to do was to learn as much as we could before we made any decisions.
After a long time, we were able to calm John enough for him to sleep. I’m sure there was more that occurred today, but it is late and I should sleep as well.
