Day 13
Today’s update on John is, like the weather, improving today but unclear for the long-term. I actually recognized a smile when I saw him this morning, even though it was masked by a gaunt face and two very swollen reddish-black eyes. He had eaten his breakfast and he ate and drank well all day. His white blood counts are dropping as they should, but his sense of well-being seems to be improving. As the day progressed, that continued, but the dad in me worried that he hasn’t yet grasped a lot of what he may have yet to deal with.
Lots of people have reached out to all of us in caring ways. A law school classmate gave me a mint condition Fred Hutchinson baseball card as a good luck charm for John. Fred Hutchinson was an obscure baseball player, but his cancer center in Seattle is by far the world’s leading leukemia and bone marrow transplant center, with three Nobel laureates. Joe, my classmate and fellow Cox lawyer, has given two such cards to people like John and they are batting 1000. Everyone’s prayers, thoughts, and patience, though quiet, are all equally gracious and appreciated, even if we can’t answer back in person.
John’s palms and the bottoms of his feet are swollen from a chemotherapy rash. His approach to this, like everything he is confronting, is to make a joke and deal with the moment, rather than allow the compilation to be overwhelming. He told me that I had to be a good dad today and cater to him, since he couldn’t walk for himself. When I was slow in getting a Coke, he said I was the worst dad in the world, until I suggested he refrain from criticizing until I actually got him what he wanted.
The doctor did indicate that the DNA testing on his leukemia cells showed, so far, no abnormalities. This is basically neutral news, but can be rightfully considered good, at least in context. His case is still very much considered one for bone marrow transplant, but his smile and this news were welcome.
Debbie and I have read everything in print and on the Internet that might relate to John’s case. I have a mind-numbing print of the abstracts from all AML studies since the acronym was formed. We met for an hour today with an Emory exec. whose daughter had John’s diagnosis and who had a successful outcome. She gave us a lot of information and reasons for hope. Still, it was difficult to balance the conversation with John’s comment from earlier in the day, asking what all the worry and fuss was, “Aren’t people pretty much supposed to get over leukemia?”
Next Monday, John has his second bone marrow test to see if he is in remission. In about 25% of cases, it takes a second round of chemo to reach a 5% or less leukemia cell count. Once in remission, he will need to start the “BMT” (bone marrow transplant) process, which takes 4 to 6 months to arrange and 4 to 6 months more to complete. There have been successful cases where none of these things worked the first time, but the patient prevailed. I’ve learned you don’t say “cured”, but, if you reach 5 years without recurrence, you have the same chances as the rest of us of contracting (or not) leukemia. There are plenty of other statistics, but we have learned that hope, whether big or small, for your one case is the most valuable thing you have to hold and to share.
John got a basket today from two friends of ours. He reacted by saying it was weird for all these people he didn’t really know to do things for him. We laughed and I said, “The problem is you’ve never really been sick before have you?”
So far, John has had nothing more than his rash from his white blood cell “nadir” process and we continue to await next week, when the various results come back, which will give us direction for the next steps to take. Like so many things, John is a little shy talking about his personal beliefs, though he respects everyone else’s. I know he would respect and appreciate your thoughts and prayers. I think we all would as well.
Lots of people have reached out to all of us in caring ways. A law school classmate gave me a mint condition Fred Hutchinson baseball card as a good luck charm for John. Fred Hutchinson was an obscure baseball player, but his cancer center in Seattle is by far the world’s leading leukemia and bone marrow transplant center, with three Nobel laureates. Joe, my classmate and fellow Cox lawyer, has given two such cards to people like John and they are batting 1000. Everyone’s prayers, thoughts, and patience, though quiet, are all equally gracious and appreciated, even if we can’t answer back in person.
John’s palms and the bottoms of his feet are swollen from a chemotherapy rash. His approach to this, like everything he is confronting, is to make a joke and deal with the moment, rather than allow the compilation to be overwhelming. He told me that I had to be a good dad today and cater to him, since he couldn’t walk for himself. When I was slow in getting a Coke, he said I was the worst dad in the world, until I suggested he refrain from criticizing until I actually got him what he wanted.
The doctor did indicate that the DNA testing on his leukemia cells showed, so far, no abnormalities. This is basically neutral news, but can be rightfully considered good, at least in context. His case is still very much considered one for bone marrow transplant, but his smile and this news were welcome.
Debbie and I have read everything in print and on the Internet that might relate to John’s case. I have a mind-numbing print of the abstracts from all AML studies since the acronym was formed. We met for an hour today with an Emory exec. whose daughter had John’s diagnosis and who had a successful outcome. She gave us a lot of information and reasons for hope. Still, it was difficult to balance the conversation with John’s comment from earlier in the day, asking what all the worry and fuss was, “Aren’t people pretty much supposed to get over leukemia?”
Next Monday, John has his second bone marrow test to see if he is in remission. In about 25% of cases, it takes a second round of chemo to reach a 5% or less leukemia cell count. Once in remission, he will need to start the “BMT” (bone marrow transplant) process, which takes 4 to 6 months to arrange and 4 to 6 months more to complete. There have been successful cases where none of these things worked the first time, but the patient prevailed. I’ve learned you don’t say “cured”, but, if you reach 5 years without recurrence, you have the same chances as the rest of us of contracting (or not) leukemia. There are plenty of other statistics, but we have learned that hope, whether big or small, for your one case is the most valuable thing you have to hold and to share.
John got a basket today from two friends of ours. He reacted by saying it was weird for all these people he didn’t really know to do things for him. We laughed and I said, “The problem is you’ve never really been sick before have you?”
So far, John has had nothing more than his rash from his white blood cell “nadir” process and we continue to await next week, when the various results come back, which will give us direction for the next steps to take. Like so many things, John is a little shy talking about his personal beliefs, though he respects everyone else’s. I know he would respect and appreciate your thoughts and prayers. I think we all would as well.
