Day 123
Debbie's quick trip to Seattle was very successful. She was able to rent a home with three bedrooms, which will roughly the same as the smaller "dorm" type apartments that the Center recommended. She met with a furnishing company and has furniture and household items ready to deliver on three day's notice. She also met with a friend who has conference room space set up for her at the friend's law office not too far away.
The House (see photo below) is in the Queen Anne area across Lake Union. It is 2.7 miles from the Center and about the same to the hospital. While it will involve driving, the area is much more livable and safe. I was going to say it is a lot like Midtown Atlanta, only hillier, but Midtown isn't really all that safe.
The house has three bedrooms and two baths. The main floor has two bedrooms, a living room, dining room, kitchen and bath, all quite clean, with tall ceilings and some character. Upstairs is one large room with a bath. It has space for both Debbie and me to work with ease and be near John, while still giving him space. The third bedroom will give Courtney space to stay when she is in town.
As far as progress on treatment goes, one interesting development occurred yesterday. The intake doctor we have worked with in Seattle called yesterday and gave what I think is positive news, in a way. He said they have been studying his case and think that he may be too "healthy" to be a good candidate for the radioactive monoclonal antibody trial. Since he is in first remission and did not have a clear diagnosis of myleodisplasia before his leukemia began, his risk level is not high enough to "experiment", if you will, on him.
I was a little disappointed with this development, but was encouraged with the added notion that his slow improvement from his first consolidation round would probably lead them not to repeat consolidation again and again, as is done with many traditional patients. Instead, they will probably go straight to ablasion of his marrow with chemotherapy and radiation, followed by the transplant. If he does relapse in the meantime, the trial would be available as a back up procedure. All in all, I think having him do well is better than the alternative of being sick and able to do the trial.
There is another trial under way that John could decide to participate in comparing actual physical marrow transplants with the less invasive stem cell infusion that is given him through a transfusion. All that is for consideration later.
The trial was really one of the two reasons to go to Seattle; the second being the fact that it is the best transplant clinic in the world. I personally think having the trial as a backup treatment still makes the decision to go clear. Still, it's yet another small bump on the roller coaster.
For some reason, Seattle asked for blood from the parents for typing. Parents are rarely good donors (unless they are cousins!), we aren't at the best age for donors and John has three "perfect" matches already. We took care of that yesterday though and I sent the samples out overnight.
We hope to hear more from Seattle tomorrow. For some reason, the insurer hasn't yet given approval for the transfer, I don't think that is delaying things, at least much. The protocols are that once insurance has been established, they contact the National Bone Marrow Center with the selected donor choice. The NBMC then contacts the doctor or clinic the donor was tested through and check on his (in this case) availability and continued good health. The donor then becomes the time question. I don't expect to be given a date tomorrow, but maybe we will have some better sense of timing. John could certainly use something to plan and look forward to.
The House (see photo below) is in the Queen Anne area across Lake Union. It is 2.7 miles from the Center and about the same to the hospital. While it will involve driving, the area is much more livable and safe. I was going to say it is a lot like Midtown Atlanta, only hillier, but Midtown isn't really all that safe.
The house has three bedrooms and two baths. The main floor has two bedrooms, a living room, dining room, kitchen and bath, all quite clean, with tall ceilings and some character. Upstairs is one large room with a bath. It has space for both Debbie and me to work with ease and be near John, while still giving him space. The third bedroom will give Courtney space to stay when she is in town.
As far as progress on treatment goes, one interesting development occurred yesterday. The intake doctor we have worked with in Seattle called yesterday and gave what I think is positive news, in a way. He said they have been studying his case and think that he may be too "healthy" to be a good candidate for the radioactive monoclonal antibody trial. Since he is in first remission and did not have a clear diagnosis of myleodisplasia before his leukemia began, his risk level is not high enough to "experiment", if you will, on him.
I was a little disappointed with this development, but was encouraged with the added notion that his slow improvement from his first consolidation round would probably lead them not to repeat consolidation again and again, as is done with many traditional patients. Instead, they will probably go straight to ablasion of his marrow with chemotherapy and radiation, followed by the transplant. If he does relapse in the meantime, the trial would be available as a back up procedure. All in all, I think having him do well is better than the alternative of being sick and able to do the trial.
There is another trial under way that John could decide to participate in comparing actual physical marrow transplants with the less invasive stem cell infusion that is given him through a transfusion. All that is for consideration later.
The trial was really one of the two reasons to go to Seattle; the second being the fact that it is the best transplant clinic in the world. I personally think having the trial as a backup treatment still makes the decision to go clear. Still, it's yet another small bump on the roller coaster.
For some reason, Seattle asked for blood from the parents for typing. Parents are rarely good donors (unless they are cousins!), we aren't at the best age for donors and John has three "perfect" matches already. We took care of that yesterday though and I sent the samples out overnight.
We hope to hear more from Seattle tomorrow. For some reason, the insurer hasn't yet given approval for the transfer, I don't think that is delaying things, at least much. The protocols are that once insurance has been established, they contact the National Bone Marrow Center with the selected donor choice. The NBMC then contacts the doctor or clinic the donor was tested through and check on his (in this case) availability and continued good health. The donor then becomes the time question. I don't expect to be given a date tomorrow, but maybe we will have some better sense of timing. John could certainly use something to plan and look forward to.
