A Long Thursday

We packed and cleaned and went to our LTFU Conference with Dr. Kiem this morning where we listened and learned.

Bone Marrow test tells us that the trend is good, going in the right direction at 3.3% abnormal cells in the marrow and .23% in the blood. The best news is that in the future we can track this through the blood instead of doing another biopsy.

Chimerism study tells us that things are stable, but it is not 100% which we would really like to see. Donor lymphocytes is 63% and granulocytes is 66%. They think that the graft has not yet fully set in and we need more time. However, there is one more test that they are doing, which meant we added another chimerisms blood draw to our day, but we don't know results yet. They want to look at the CD56 cells to help them understand things a bit better.
We will repeat the chimerism studies in one month. They may recommend a donor lymphocyte infusion in the future, but for now we just keep on keepin' on.
We will talk with SCCA in one month to determine a plan and when we should be seen again.

Blood tests will continue weekly (or more if needed) since the neutrophils were so low. We asked if we were doing something that was causing the crazy blood counts and they said no...nothing we do can change that...we just keep watching them...it is not uncommon for transplant patients.

No vaccines yet - the B cells are not good enough for that, and we are to continue to watch for GVHD sypmtoms. He keeps the Hickman line in and there should be no problem to the length of time it remains unless it becomes infected, but lucky for us he hasn't had any problem with it. Still no swimming, no house pets or caring for animals, no shooting rifles, and remain cautious in public places, etc.

Here's the big surprising news of the day. The Dexa test tells us that Terry has osteoporosis. This is concerning and probably due to the prednisone he has had several times in the past. So this news led to another appointment today - an infusion of Zometa to help strengthen his bones. We will retest in 6 months.

We had some time between our blood draw and infusion, but we had turned in our room keys and had nowhere to go. We did however leave our car in the House garage to pick up after lunch, but since we weren't going home when we thought we were, we decided to just hang around in the SCCA House lobby and put together a puzzle.

We got home about 9:20 pm. It really is nice to be home again!