May 19, 2025
I was thinking today about how far we have already come in this bone marrow transplant process:
The workup- blood work, testing, imaging, bone marrow biopsy, etc.., finding a donor and 10/10 match for Ollie and waiting for their health exams and bloodwork.
Conditioning (preparing Oliver’s bone marrow for the donor’s marrow)- the first 9 days of our hospital stay with very intense and high-doses of chemotherapy with the intention of suppressing the immune system and destroying the old marrow and making space for the new cells.
Transplant- Waiting for the donor to get her bloodwork and receiving it here at our hospital and then the actual transplant/ transfusion day.
Now we wait for engraftment/the donor’s cells to start producing red cells, white cells, and platelets. This will likely be the toughest week as all of Oliver’s blood counts are at zero. This bone marrow transplant is essentially taking him to the brink of death and then watching his body come back to life again. On transplant day, his nurses were commenting on how this is his new birthday and in a way it is. He is being reborn through our donor’s bone marrow. The conditioning regimen is so intense that if there had been an issue and our donor couldn’t donate, Will or I would have had to scramble and donated our own marrow and hoped for the best. Patients don’t recover from the conditioning regimen which is why the timing and donor’s willingness are such a vital part of a bone marrow transplant’s success.
Oliver has started to feel the side effects of chemo and no counts. He has started to experience back pain and diarrhea, which our team thinks is a sign that he’s started to get mucositis (an expected and very common side effect). Mucositis is painful inflammation and ulceration of the mucus membrane that lines the digestive tract. It is most common in the mouth and throat but can affect the entire GI tract. Some people just get GI symptoms and some just get mouth and throat symptoms.. some get both. Will you pray that Oliver does not have the mouth and throat sores? We are managing his pain right now, but I think it will become more difficult if he has mouth and throat sores as well.
He is still looking good at this point in the process, but will likely get worse before he gets better. He is at high risk of infection and could also develop fevers throughout the week. He is still eating and drinking which is a good sign, but we will start giving him some nutrition through the NG tube so we don’t have to give so much medicine on an empty stomach. Thank you for your prayers— we especially need them this week and next!