Journal entry by Amy scott —
Two days of appointments in Madison for two transplant related things. One with the normal transplant team and labs while the second day was meeting with a specialist to discuss results about the damage that has occurred due to the CYCLOPHOSPHAMIDE (chemo) right after the bone marrow transplant. As far as the labs, overall they are holding except there was a pretty good drop in platelets and then hemoglobin a tiny bit but Dr. M is hoping it’s due to that influenza Tom had awhile ago. Needless to say Tom and I were a little concerned that they went from 94-68 normal low end is 160 but we are trying not to overthink it too much. They continue to decrease the tacrolimus which may help with some other things such as preventing more kidney damage. The reason he was put on it originally was due to the graft vs. host so we just need to continue to watch for any signs of a gvhd flare. GVHD is where the donor cells attack Toms organs. Lungs still a little wheezy at times but better. The appointment with the specialist today gave us a better explanation of what is going on as well as some options depending where things are at over the next few weeks. As always, we certainly will go in more depth if asked but not on here. We would rather have people ask us questions though so they understand as it’s definitely been a long road and still is. I know it is hard sometimes to understand because Tom does look good on outside and he sure does a good job of smiling though things even when he is miserable. A big thank to those who helped with Chipper, the Madison stay in different ways and also for those who continue to keep Tom in prayers and check in with us.
Patients and caregivers love hearing from you; add a comment to show your support.