Day 21
John held his own well today, the end of the third week that he has been hospitalized, but the transplant news we ultimately got will complicate things. His blood count slipped, his weight is down to 165 and he shaved his head because his hair is now noticeably patchy. The doctors say, however, that he is on track, and he certainly hasn’t suffered any infections, complications or setbacks, which affect so many patients.
Debbie and I visited with him during the day and then brought him a dinner of turkey, a baked potato and broccoli, all of which he ate about half of. His roommate Dan spent a long time there and asked if John wanted him and their friends to shave their heads. He declined, since he already had my scalp to look at. John and I did decide, however, to order him an Andy Warhol costume wig just for fun.
A new doctor began a two week shift of rounds today. He apparently also performs bone marrow transplants and seemed comfortable with John’s progress. He indicated, however, that the bone marrow test from a week ago, while good, did show the presence of some “blast” or leukemia cells. My readings indicate that this is not unusual, but his report was not what we were told earlier by the prior doctor. I followed up with a question and was told that his risk of recurrence was high because John showed “myleodysplasia” in his white blood cells. Both the risk level and the diagnosis were different from what we had been told for the past three weeks. These descriptions are probably merely labels assigned to differences seen under a microscope, but hearing them did cause me to press for the results from John and Courtney’s HLA compatibility tests. I’d lost count of the number of times and people I’d asked for the status of the tests, which normally take two weeks to complete. Once again, they promised to check.
This evening, I stopped the doctor again and asked about the results. He said he hadn’t gotten them from the lab and he couldn’t say when he might. That was it. This evening, however, a transplant coordinator called John and told him that she had the results. Courtney is not a match, but she has found a couple of potential donors who appear to be good matches and others that might be close. Using an unrelated donor requires a 4 to 6 month process, plus an equal amount of time for the transplant and recovery. It will also mean that he will likely require four or more rounds of chemo to stave off recurrence while all this takes place.
None of this is bad news, just an indication of the direction we will be going, the time it will take to get there and the risks along the way. I’m personally disappointed in the hospital for the way they handled the process, but it is better to know their standard of care now, rather than later. Still, it hurts to have to fight for attention from the hospital while fighting the disease.
Debbie and I visited with him during the day and then brought him a dinner of turkey, a baked potato and broccoli, all of which he ate about half of. His roommate Dan spent a long time there and asked if John wanted him and their friends to shave their heads. He declined, since he already had my scalp to look at. John and I did decide, however, to order him an Andy Warhol costume wig just for fun.
A new doctor began a two week shift of rounds today. He apparently also performs bone marrow transplants and seemed comfortable with John’s progress. He indicated, however, that the bone marrow test from a week ago, while good, did show the presence of some “blast” or leukemia cells. My readings indicate that this is not unusual, but his report was not what we were told earlier by the prior doctor. I followed up with a question and was told that his risk of recurrence was high because John showed “myleodysplasia” in his white blood cells. Both the risk level and the diagnosis were different from what we had been told for the past three weeks. These descriptions are probably merely labels assigned to differences seen under a microscope, but hearing them did cause me to press for the results from John and Courtney’s HLA compatibility tests. I’d lost count of the number of times and people I’d asked for the status of the tests, which normally take two weeks to complete. Once again, they promised to check.
This evening, I stopped the doctor again and asked about the results. He said he hadn’t gotten them from the lab and he couldn’t say when he might. That was it. This evening, however, a transplant coordinator called John and told him that she had the results. Courtney is not a match, but she has found a couple of potential donors who appear to be good matches and others that might be close. Using an unrelated donor requires a 4 to 6 month process, plus an equal amount of time for the transplant and recovery. It will also mean that he will likely require four or more rounds of chemo to stave off recurrence while all this takes place.
None of this is bad news, just an indication of the direction we will be going, the time it will take to get there and the risks along the way. I’m personally disappointed in the hospital for the way they handled the process, but it is better to know their standard of care now, rather than later. Still, it hurts to have to fight for attention from the hospital while fighting the disease.
