[Day +71] Seasons of Gratitude
This fall in North Georgia has been the most beautiful we can recall in the years we have lived here. We have never seen leaves with such vibrant colors–gorgeous shades of garnet, gold (see what I did there? 😉), orange, and rust. It is truly different this year.
Or maybe— we now see the beauty surrounding us when 15 months ago, we would have been zooming around from one thing to the next, not noticing. Our eyes are now open.
We were filled with great uncertainty when we went to the hospital back in August. Deep down, we didn’t know what a return home would look like. We didn’t know how Carter would respond to transplant. To put it simply, we were terrified of the unthinkable. We were gutted.
We have spent months in what feels like the same place— treading water, running on a hamster wheel. But we haven’t been in the same place, physically or metaphorically. We have been walking miles and miles, moving and watching. Watching the seasons change from summer to autumn and now late into fall. So much time has passed, and so much has happened.
During our most recent seven-day inpatient stay to diagnose and begin treatment for GvHD, we learned that Carter is low-risk for severe acute GvHD. This result made it possible for Carter to enroll in a new trial for treatment. He has been treated with half the amount of steroids usually used, and we have already begun the wean.
This is incredible. He has responded to this smaller amount of steroids, and we were able to lower the toxicity to his body. He is back to eating, drinking, and taking all his medication with zero issues. We are so grateful this option was available to him.
We were discharged back to RMH on day +59. We knew our team was still pleased with Carter’s progress despite the speed bumps we had hit. We also knew there had already been chatter about us going home before the speed bumps, which made them even harder to handle. But we did handle them, and then…
The most significant milestone for us, thus far, in the BMT journey happened. We were discharged from RMH on day +63, and now, we are HOME! That’s correct; HOME and here 35 days earlier than we anticipated! There goes Carter, still being the overachiever.
We were able to celebrate Halloween together as a family. Our family costume tradition continued and was inspired by Carter this year. He is such a good sport and had a blast with it.
The same dietary and isolation rules will continue, but we can do everything we were doing at RMH from home. Carter will continue his weekly clinic appointments to check counts and for medication adjustments. We hope those visits will begin to space out even more as he progresses. Carter’s second set of chimerism tests were drawn recently. They are done at +30, +60, +90 days, etc. Once we receive these results, I will dive into what we know and what they mean. Below are his most recent counts.
Hallelujah! We did it! We lived away from our home, family, and lives for 75 days, not including the 50+ days in 2021. It was a long road. We hope the most challenging part is in the rearview mirror.
We could not be more proud of Carter. He is a true warrior. He fought hard, and so far, he is winning. He is not giving up, and neither are we. He will be back in school. He will be back to living like other 11-year-old boys. He will be able to play his beloved baseball again. We still have a lot of road to pave, but we will get there day by day.
We know now what is to come, and we understand how we got to where we are.
God, and our faith. His plan for Carter and us.
Our selfless donor.
Our Oma, who, on her own, ran our household and the little boys’ lives without missing a beat.
Your prayers, support, and words of encouragement.
Our village that rallied behind our every need, most of which we didn’t even know we needed.
The gratitude we feel during this season of thanksgiving is boundless. We are forever indebted to everyone who lifted us. While walking or driving around for the remainder of this season, we’ll watch the beautiful leaves continue to fall. This, to us, symbolizes the end of the “thick” of this journey. We cannot wait to see what is in store for Carter come spring and the new leaf growth!
I will continue to post updates on Carter’s count progress and milestone along the way. Please continue to walk with us.
With our deepest gratitude,
Lyndsay, Tim, and Carter