Rona update: Engratfment and Summer Plans

June 9, 2023

Rona officially engrafted on Saturday (Day 16), which means my cells have begun to make cells in her marrow! This week her white cell counts have gotten so high that they are now above the normal range and the team has started to wean her off of the cell growth factor infusions. Her platelets have also come down, which is a good thing, as they transition from being made by her remaining stem cells to mine.

Rona is now through the highest risk window for a common liver complication from transplant, and so had her last shot of blood thinner yesterday. She had woken up to that injection daily for the past month and won't miss it one bit. Assuming her liver stays healthy, she will drop one additional medication and her twice-weekly liver ultrasounds next week, once she hits Day 30. She'll miss the belly massages, but not the medicine. 

They have also begun pulling some of Rona's other medications, and she is down to a handful of oral medications throughout the day and two infused meds at night, in addition to the mouth rinses and powders we are using to help keep her infection free. These are all medications we can and will administer at home until her immune system is rebuilt, about 8-11 months from now.

We are starting to transition into thinking about life in the "after", which is a luxury we hadn't truly afforded ourselves until this point. I am headed home today for the first time since we were admitted to take care of some errands and the team has begun pre-authorizing medications with her insurance company in case she is ready for discharge in record time. We learned she can go outside (masked) next weekend, if nothing changes with her health status. She has now been in the tiny room for 33 days and is thrilled by the prospect of feeling the sun on her skin. 

This week Rona was also accepted into the Sunrise VX Camp experience, which is technically for kids with cancer and their siblings, but she qualifies because of her treatment. She will have four hours a day of programming, including circle time with other kids going through chemo and transplant, in addition to traditional camp activities. We have noticed it is increasingly challenging for her to carry on conversations with friends because of the gap in their day-to-day experiences, so we are really happy she will be able to meet and connect with peers who understand this part of her life. 

We still have a long road ahead, but are starting to get used to getting good news (it took a while) and are celebrating every day she is feeling better than we expected.