Day 22
Exhaustion and frustration pretty much caught up with me yesterday, but John showed more signs of improving. His blood count reached “.8” which indicates that his immune system looks like it will bounce back, though we still can’t get any real answer of what levels it needs to reach. The recent blood transfusions have given him energy. He is doing some work on his website and walking a good bit more. The only sign of any infection remains the sniffles, though his feet still need watching, if you can stand to look at them. Debbie cooked John a chicken dish that he had asked for, and he cleaned his plate for the first time in quite a while.
Debbie ran into a family in the hallway voicing some of the same concerns I have had about communications with doctors and timeliness by the hospital. I contacted the General Counsel of the University, Debbie works with his father and I’ve worked with him for some years. He said he would make some contacts, but did not offer much encouragement in terms of communications or care.
John continues to think he can take classes this next semester. He thinks he will have to miss only 6 days of classes a month while he is hospitalized for chemotherapy. I suggested we wait a while, work on his incompletes and see, but after chemo he has to be isolated for two more weeks, which means, barring any complications, at best he would get to class 1 week a month. More importantly, as soon as his transplant is arranged, he will be completely cut off from any schooling. Setting goals like his are a positive part of the healing process and encouraging in important ways. I worry though that he is not getting good information from his doctors, who have yet to even mention that he has a potentially fatal disease and the risks of and effort required for a transplant. His mother, who remains on vacation, tells him that once he is in remission, he will be cured and all the rest is just outpatient follow-up.
I’m sure you can tell that I am tired and frustrated. Most of what I have done for a living for 25 or so years has been to solve problems that no one else could fix. There have been a few like this that you can only do your best and then hope and pray for the best. Those are hard and sometimes don’t work out.
I think that John is up for a few visitors now. We will be with him this morning and early afternoon.
