Discharge instructions

Big day here in room 11. I couldn't get back to sleep after 4 a.m. labs this morning, which meant I was awake when, shortly before six, our nurse came in with the day's counts. She said, very seriously, you are going to like this. And I did. ANC 616.

I still think it might have been a bad count, because it just seems like too big of a jump, and after such grim stagnation, so I am trying not to get my hopes too high. But if it's 500 or higher tomorrow we get to go home.

Evidently the medical professionals here think the ANC was legitimate and we might be out of here, because I got a discharge instruction booklet, and a lengthy lecture on the discharge instructions, from Alison, the transplant coordinator. There are lots of rules: no public places, clean the fish bowl weekly, bathe daily, call if he starts bleeding and won't stop or if he has a fever over 100.4, and don't eat Stonyfield Farm yogurt (too much bacteria). And about ten thousand more.

Also, I received training on changing the dressing on the Hickman catheter in Samson's chest. I practiced on Chester:

We have not gotten any official reports on the bone marrow biopsy yet. I expect some information tomorrow. Dr. Chang looked at the slides yesterday after the procedure and he said the marrow looked normal, not like leukemia, and that it contained all the different kinds of cells that it was supposed to have in it. However, he emphasized that he is not a pathologist and we need to wait for that report for a definitive analysis. I think he was hesitant to even give me his preliminary opinion, but I appreciated that he did because I like positive news, even with caveats.

Dr. Nemecek came by today, very cheery about the ANC and our possible discharge tomorrow. She said that if the marrow is as good as can be (which we will find out this week), Samson has a 30% chance of relapse in the next year -- meaning a 30% chance the disease will return either as MDS or as acute myeloid leukemia in the next year. After the first year, the chance of relapse declines, and after three years, the chance of relapse is very small. I would like to think we will use this information as an encouragement to live our lives to the fullest, rather than letting it become a dark cloud. But I certainly won't go a day without thinking about it.

In the shorter term, the first 100 days post-transplant (until the end of July) is the high-risk period in terms of transplant problems, such as GVHD, and also infections, because of the immune suppressant drugs Samson takes to prevent GVHD. We have to be extra careful to avoid sick people. For example, the discharge instructions recommend that I ask the kids' schools to let us know of any cases of measles, mumps, or chicken pox, so we will have warning if Samson might be exposed via his siblings.

I was missing my big kids today, so Kandis brought them up to the hospital after school, and we did some art projects in the playroom with the CHAP folks while Kandis stayed with Samson. Again, I was so impressed with the projects they had set up -- today there were frames to paint and decorate, and Josephine and Harriet loved it. Cash played with cars on the playroom floor, pausing occasionally to give me hugs. I sat on a little chair right in the middle of my three, watched them work, and ate the french fries Kandis brought me. A nice afternoon treat.

There is a chance that tomorrow I will update you from my house, where the furnace filter has been changed, where only pasteurized dairy products are welcome, and where the hand sanitizer flows freely.