Day 26, not quite yet or perhaps early.
The solstice in Washington - the sun never seems to set on the worries that seem to shadow the day and what passes for the night. My call this morning was really welcome, first for the chance to be part of the conversation of work and also because it was light by then anyway. Actually, I really like where I work and what I get to do. That pleasure is one of those things you can count on one hand as mattering most in life, at least for me.
Only this is not really about me, so this morning John's temperature was down enough that I was able to let him sleep until the clinic could see him at 11:30. He was otherwise not really better, and, after a lot of medical waffling, the doctor came in and ordered a series of tests. In a sense, all that may sound less than sincere, but the fact is that John's counts continue to rise well (with the exception of platelets, which can be quirky leading indicators). It is his qualitative signs that don't seem so good.
I had left a message for John's lead nurse in the evening, before our hospital trip, mentioning my concerns over John's malaise and the fact that he hadn't been seen by a doctor for more than five minutes since he got out of the hospital or (more importantly) by any one nurse more than twice. We went in at 11:30, John got a serious going over, and hen they found an opportunity to bring in the doctor. The doctors and PAs work here, as at Emory, on monthly rotations. This particular one, seems as good as any, but equally and more about decisiveness than bedside manner - not a criticism, mind you.
They quickly decided to start with an ultrasound test, followed by an endoscopy. Within minutes, they found the gastro doctors somewhere on the floor and John had an initial exam by them. Blood tests followed shortly and then the ultrasound test at 3:30. John and I joked about seeing if he was pregnant, but he ended up spending 40 minutes on the screen, while I sat in the lobby watching that rarest of Seattle weather, a thunderstorm, roll in.
The lead gastro doctor eventually came through the door, looked me in the eye from across the room, took one step my way, then turned and rushed oiff to the elevator. I'm not kidding. There are moments when there is nothing richer than being a father and then, for some, those that leave you in the kind of void that is all the worse for knowing what it seems to say.
The doctor had mentioned to John that he should check with the transplant team before leaving. After an hour or so of waiting, John, feeling badly anyway, decided maybe we should leave. I insisted on not leaving and eventually and after a number of pages, the PA nurse, who was either busy or not so keen on delivering news, came by. Ultrasound isn't supposed to be all that much help here, but he said that they found some fluid in John's abdomen, what appeared to be liver inflamation and possibly his spleen. He also mentioned something about needing to look more at the pancreas.
John has been aware and watchful over GVHD risks, but I don't think he was willing to hear the things I heard or read into what I heard. Being the "optomist", I added that his blood counts continued to improve quite well, which was a good sign, although I understand that too quick or strong an engraftment can result in the transplanted immune system attacking its new host.
Not to wander off into whatever, but fathers and sons seem to need to build the kind of wall between them that Robert Frost felt make good neighbors. There are things you just don't discuss across whatever divides a generation. Whatever there may have been between us of that distance, has narrowed over the past few months, but John rightfully still has a place of his own reserved to cope and I can sense him working that soil.
I'm not sure what I meant made it through that mixture of metaphors, but I think we are both wondering if all this is a bad sign, a mixed signal or nothing at all. So, tomorrow John gets platelets before his procedure and his bone marrow biopsy will wait until Tuesday. Hopefully, he will rest well enough to avoid another trip to the hospital. I could certainly use the sleep.
Well, perhaps not. Courtney called as I was finishing up. As we talked, she said that John was on the phone with mom and mentioned that he felt worse. The message got to me upstairs via 7000 miles, I checked and he was feeling much worse. I hate to leave things hanging, but I'm signing off to check with the doctors again.
Only this is not really about me, so this morning John's temperature was down enough that I was able to let him sleep until the clinic could see him at 11:30. He was otherwise not really better, and, after a lot of medical waffling, the doctor came in and ordered a series of tests. In a sense, all that may sound less than sincere, but the fact is that John's counts continue to rise well (with the exception of platelets, which can be quirky leading indicators). It is his qualitative signs that don't seem so good.
I had left a message for John's lead nurse in the evening, before our hospital trip, mentioning my concerns over John's malaise and the fact that he hadn't been seen by a doctor for more than five minutes since he got out of the hospital or (more importantly) by any one nurse more than twice. We went in at 11:30, John got a serious going over, and hen they found an opportunity to bring in the doctor. The doctors and PAs work here, as at Emory, on monthly rotations. This particular one, seems as good as any, but equally and more about decisiveness than bedside manner - not a criticism, mind you.
They quickly decided to start with an ultrasound test, followed by an endoscopy. Within minutes, they found the gastro doctors somewhere on the floor and John had an initial exam by them. Blood tests followed shortly and then the ultrasound test at 3:30. John and I joked about seeing if he was pregnant, but he ended up spending 40 minutes on the screen, while I sat in the lobby watching that rarest of Seattle weather, a thunderstorm, roll in.
The lead gastro doctor eventually came through the door, looked me in the eye from across the room, took one step my way, then turned and rushed oiff to the elevator. I'm not kidding. There are moments when there is nothing richer than being a father and then, for some, those that leave you in the kind of void that is all the worse for knowing what it seems to say.
The doctor had mentioned to John that he should check with the transplant team before leaving. After an hour or so of waiting, John, feeling badly anyway, decided maybe we should leave. I insisted on not leaving and eventually and after a number of pages, the PA nurse, who was either busy or not so keen on delivering news, came by. Ultrasound isn't supposed to be all that much help here, but he said that they found some fluid in John's abdomen, what appeared to be liver inflamation and possibly his spleen. He also mentioned something about needing to look more at the pancreas.
John has been aware and watchful over GVHD risks, but I don't think he was willing to hear the things I heard or read into what I heard. Being the "optomist", I added that his blood counts continued to improve quite well, which was a good sign, although I understand that too quick or strong an engraftment can result in the transplanted immune system attacking its new host.
Not to wander off into whatever, but fathers and sons seem to need to build the kind of wall between them that Robert Frost felt make good neighbors. There are things you just don't discuss across whatever divides a generation. Whatever there may have been between us of that distance, has narrowed over the past few months, but John rightfully still has a place of his own reserved to cope and I can sense him working that soil.
I'm not sure what I meant made it through that mixture of metaphors, but I think we are both wondering if all this is a bad sign, a mixed signal or nothing at all. So, tomorrow John gets platelets before his procedure and his bone marrow biopsy will wait until Tuesday. Hopefully, he will rest well enough to avoid another trip to the hospital. I could certainly use the sleep.
Well, perhaps not. Courtney called as I was finishing up. As we talked, she said that John was on the phone with mom and mentioned that he felt worse. The message got to me upstairs via 7000 miles, I checked and he was feeling much worse. I hate to leave things hanging, but I'm signing off to check with the doctors again.
