Day 24
John’s blood count was up to .9 today, and he was allowed to go outside for ½ hour during the day. We used the time to walk the campus and also to pick up a painting of his that had been on display. Of course, he had to wear a mask the whole time, which embarrassed him, but he did relish the freedom of being outside of the hospital floor for the first time.
One of the clearest signs that John is recovering is his seeing how anxious he is to be released. Dr. Chai said that John would be able to leave sometime this week, but that meant he would need to return for his first round of consolidation chemotherapy during Christmas.
After not receiving the results of John and Courtney’s HLA typing tests, I made a bit of a fuss – well, actually one people don’t tend to forget. I told the doctor it was time for a second opinion from Seattle (he studied there, and agreed that that was where he would take his child). I went through the hospital records process and ended up being told I couldn’t have or see the records, though they were willing to fax them to another doctor. Seeing this coming, I’d prepared a General Power of Attorney for Health Care, but all that did was confuse them more. Still, it helps to be a privacy lawyer and having done my share of estate work.
I wanted to see the details of John’s reports myself mostly because of the series of communications failures at the hospital, but also so that I could have a meaningful conversation with Dr. Radich in Seattle. After 5 hours of stern conversation, they agreed to fax the records and allow me to look at them with the doctor here. As it turned out, I wasn’t able to do that.
Apparently, word reached the head of the Department, Dr. Khoury, because he came to see us about 5:30. He spent a long time explaining the transplant process to John, talking about the chances of him being able to take classes next term and answering his questions. The doctor, Jill (who stopped by after her trip to Utah) and I then talked for close to an hour about John’s case and my concerns with the hospital. He is an impressive and sincere person, the kind of seasoned and caring doctor you might expect to see on television (perhaps not “Scrubs”). The only problem is that he has only been in charge there for 3 months. Dr. Chai, who trained in Seattle and who also seems very good, has only been there 6 months.
Dr. Khoury explained that most patients and families aren’t prepared to look ahead to a transplant until after they have recovered from the initial treatment, nor do they understand enough to ask the kind of questions I’ve had. He also said that medicine is an art, and he wanted to see John’s next bone marrow test results and the details on donor candidates before recommending further. In a kind enough way that I wasn’t offended, he said that I should “hurry a little slower.” Of course I won’t, mostly because I don’t trust the hospital’s system to work, but I do now have access to the head of the Department and know that he will be keeping a close eye on John’s case.
We also talked about success rates for transplants. He didn’t give Emory’s, but acknowledged that they were better elsewhere and that the odds went down significantly if the first transplant doesn’t take. He did say that generally, the odds for success in an AML patient with a perfect donor were about 60%. They went down to 30% if the patient has dysplasia or other pre-cancerous conditions. Debbie had a conversation with someone at the American Cancer Society who knows the landscape on these things. His comment was that you wanted to get out of Atlanta if you wanted good treatment.
John hasn’t yet had a doctor talk to him with this kind of information, but Dr. Khoury agreed to schedule a consultation with John and the rest of us after he is released. I think he will do a good job of explaining it in a way that he can handle.
One of the clearest signs that John is recovering is his seeing how anxious he is to be released. Dr. Chai said that John would be able to leave sometime this week, but that meant he would need to return for his first round of consolidation chemotherapy during Christmas.
After not receiving the results of John and Courtney’s HLA typing tests, I made a bit of a fuss – well, actually one people don’t tend to forget. I told the doctor it was time for a second opinion from Seattle (he studied there, and agreed that that was where he would take his child). I went through the hospital records process and ended up being told I couldn’t have or see the records, though they were willing to fax them to another doctor. Seeing this coming, I’d prepared a General Power of Attorney for Health Care, but all that did was confuse them more. Still, it helps to be a privacy lawyer and having done my share of estate work.
I wanted to see the details of John’s reports myself mostly because of the series of communications failures at the hospital, but also so that I could have a meaningful conversation with Dr. Radich in Seattle. After 5 hours of stern conversation, they agreed to fax the records and allow me to look at them with the doctor here. As it turned out, I wasn’t able to do that.
Apparently, word reached the head of the Department, Dr. Khoury, because he came to see us about 5:30. He spent a long time explaining the transplant process to John, talking about the chances of him being able to take classes next term and answering his questions. The doctor, Jill (who stopped by after her trip to Utah) and I then talked for close to an hour about John’s case and my concerns with the hospital. He is an impressive and sincere person, the kind of seasoned and caring doctor you might expect to see on television (perhaps not “Scrubs”). The only problem is that he has only been in charge there for 3 months. Dr. Chai, who trained in Seattle and who also seems very good, has only been there 6 months.
Dr. Khoury explained that most patients and families aren’t prepared to look ahead to a transplant until after they have recovered from the initial treatment, nor do they understand enough to ask the kind of questions I’ve had. He also said that medicine is an art, and he wanted to see John’s next bone marrow test results and the details on donor candidates before recommending further. In a kind enough way that I wasn’t offended, he said that I should “hurry a little slower.” Of course I won’t, mostly because I don’t trust the hospital’s system to work, but I do now have access to the head of the Department and know that he will be keeping a close eye on John’s case.
We also talked about success rates for transplants. He didn’t give Emory’s, but acknowledged that they were better elsewhere and that the odds went down significantly if the first transplant doesn’t take. He did say that generally, the odds for success in an AML patient with a perfect donor were about 60%. They went down to 30% if the patient has dysplasia or other pre-cancerous conditions. Debbie had a conversation with someone at the American Cancer Society who knows the landscape on these things. His comment was that you wanted to get out of Atlanta if you wanted good treatment.
John hasn’t yet had a doctor talk to him with this kind of information, but Dr. Khoury agreed to schedule a consultation with John and the rest of us after he is released. I think he will do a good job of explaining it in a way that he can handle.
