Our winter has been a fun and crazy one. We are still traveling endlessly to Phoenix it seems for appointments but, it is getting better slowly.

Sawyer is officially off of ALL medications! She had her first appointment with the long term follow up team about a month ago. She has been cleared to see that team now just once every 3 months. She does still have many other appointments, some related to transplant and transplant side effects, other for her amniotic band stuff. She kept us busy medically long before her dock8 diagnosis so no surprises there. While she does love her school, she struggles so we have been trying to get some answers as to if there is a cause. The Neuropsychologist has diagnosed her with mild ADHD(not hyperactive) and mild dyslexia. They can’t directly tie the ADHD to transplant and chemo but, any medical trauma can contribute to the development of ADHD, and she has had ALOT of medical trauma since day one of her life.

Miss Harper is just as sassy as ever. She has struggled to adjust but, is getting there. She is just beyond 6 months post-transplant and still sees the BMT team every other week in Phoenix. They have officially started to wean her off of her immunosuppressant medication. It will be a slow wean over a 3-month period to make sure that it’s done safely and ensure she doesn’t not develop graft vs host disease. I honestly cannot wait for her to be completely off of it. After 2 transplants, I truly feel that is has a huge impact on their emotional state. Our girls have NOT had the extreme side effects that can occur for some such as hallucinations. However, they both have struggled to manage everyday reactions/emotions while on the medication. Praying that Harper has no complications through her wean and she can get off of it ASAP. We are also having HUGE issues getting our insurance to pay for the Tacrolimus(immunosuppressant med) because it is a compounded medication.

They decided that as of January 1st, 2024 that they will not cover the medication because some of the ingredients in the compound can be obtained over the counter . We have been fighting over the last month with them. It’s not something we can mix at home but they don’t understand that. The BMT team has been wonderful helping us navigate this issue but, an already expensive medication with insurance has become even more costly with them deciding to not cover it at all. We are so endlessly thankful to have our COTAforlindsaygirls funds available. We have used half of the funds raised for them just in the last 18 months, which is approximately $50k. I truly do not know what we would have done without those funds and all of the wonderful people who have contributed! You are all heroes to us!