The Recovery Road

As we prepare to go home, we had a bone marrow transplant summary conference with BMT Dr. Summers to go over where Ashtyn is in her recovery and what the plan is moving forward. All the information discussed will be sent to Primary Children’s Hospital in Salt Lake City to further her care there in one week. It’s only been 128 days since the transplant. Almost every organ system has been affected negatively by all of the chemotherapy, radiation, and three transplants. She’ll be going home on 21 total medications, 53 oral pills a day, as well as potassium, phosphate, acetate, and magnesium IV fluid every night. Once home she’ll continue to be seen by a BMT team, and follow up with her oncologist, nephrologist for kidney issues, pulmonologist for decreased lung function, cardiologist for rhythm and fluid monitoring, endocrinologist for hormone replacements, neurologist for neuropathy and nerve function, metabolic bone specialist for bone health, and physical therapist to help her walk again. She will continue receiving platelet transfusions at least twice a week and occasional red blood cell transfusions until her marrow can recover better than the current 5% cellularity. Because of how incredibly rare a 3rd transplant is, there’s very little medical data; but even so, the complications and slow recovery comes as no surprise to anyone. Her body has been through a lot. It’s going to take a long time to recover but no doubt she’ll get there.