To say this has been a challenging week is an understatement. Tristan is on day 14 of induction chemotherapy. He has been having significant side effects of nausea, vomiting, diarrhea and abdominal pain. He is very weak and can barely eat or walk right now.
We are taking it hour by hour. Sometimes he has a good evening. When he feels ok we watch silly shows.
I met with the transplant team. At this point only me, Matt, and Aidan will swab to see if we are a match for bone marrow transplant. Once we find out if we have a match we will get information on our treatment pathway.
We do know he has to undergo a through work up prior to transplant.
He will get a lumbar puncture and bone marrow biopsy in 14 days to assess his counts. Based on that we will learn if he needs another 32 d chemo cycke. If they are good there’s a possibility he can come home for 2 weeks…. Before he goes back in hospital for 8 weeks for conditioning chemo, total body irradiation (tons if side effects which suck) and bone marrow transplant. He will then be on immunosuppressive therapy plus chronic desatanib (tki) to treat CML. Once he gets home he will be in isolation for 9 months to 1 year.
That means no extended family dinners, friends in home. He can see friends outside if they are healthy.
We need to stay focused on the positive and take any good news as a win.
I restarted work thus past week and it was wonderful seeing my work family and amazing clients/friends.
We are so grateful for your support! Love you!