Day 125
I think the mist over getting started in Seattle may be clearing just a bit. One of the coordinators called John late yesterday and said his initial appointment will be at noon on Tuesday, April 12. He will then have two weeks of outpatient work involving tests and installing a "Hickman port" in his chest to replace the tubes he now has in his arms. Dr. Hickman invented them and still comes in and installs them sometimes, they say.
On April 25, he will have a conference with the head doctor of the team and will probably start a 3 weeks hospital stay at that point. He will receive two chemotherapy drugs, Bucolfin (sp?) by pill 4 times a day and Cytoxin (with a name like that, you don't want to know what's in it) by IV twice a day. His transplant will be on May 5 or 6, assuming all has gone well with both John and the donor in the meantime. The normal period of time that he will need to be in Seattle, barring complications, will be about 100 days. In that time, he will need to stay well, the transplant will need to "take", the time for acute "graft versus host disease" (GVHD) will need to pass, avoid relapse into leukemia and then adjust to all the things that are involved in living with someone else's blood and immune system.
I have offered to have John ready earlier if they have an opening arise, but so far they haven't responded at all. I'm guessing that means we will need to have him there and ready for April 12. Debbie and I are working out the logistics, but I think I will go out about April 8 to get things set up, perhaps with Courtney's help, and they will follow on the 11th.
The stress, compounded by getting ready for a move without a fixed date, is taking its toll on all of us, finding a weak spot in each - not just John, but Debbie and also Courtney, who has been alone with her own needs through much of this. I'm getting by well enough for now, but living on emotional credit can lead to paying with interest over time. Cancer is a family disease that eats away at more than its intended victim. It can tear down individuals, but the only way to overcome it is to fight together. That is what family is for, I think.
On April 25, he will have a conference with the head doctor of the team and will probably start a 3 weeks hospital stay at that point. He will receive two chemotherapy drugs, Bucolfin (sp?) by pill 4 times a day and Cytoxin (with a name like that, you don't want to know what's in it) by IV twice a day. His transplant will be on May 5 or 6, assuming all has gone well with both John and the donor in the meantime. The normal period of time that he will need to be in Seattle, barring complications, will be about 100 days. In that time, he will need to stay well, the transplant will need to "take", the time for acute "graft versus host disease" (GVHD) will need to pass, avoid relapse into leukemia and then adjust to all the things that are involved in living with someone else's blood and immune system.
I have offered to have John ready earlier if they have an opening arise, but so far they haven't responded at all. I'm guessing that means we will need to have him there and ready for April 12. Debbie and I are working out the logistics, but I think I will go out about April 8 to get things set up, perhaps with Courtney's help, and they will follow on the 11th.
The stress, compounded by getting ready for a move without a fixed date, is taking its toll on all of us, finding a weak spot in each - not just John, but Debbie and also Courtney, who has been alone with her own needs through much of this. I'm getting by well enough for now, but living on emotional credit can lead to paying with interest over time. Cancer is a family disease that eats away at more than its intended victim. It can tear down individuals, but the only way to overcome it is to fight together. That is what family is for, I think.
