[Day +325] Full Bloom
It’s been a minute. Isn’t that what they say?
One hundred eighty-five days have passed since our last update. We wanted to share, yet we didn’t know what to share.
We have been spending our time together, acclimating to our new ‘normal’ lifestyle. We live differently than we did before, committed to growing where we have been planted. Our lives are quieter, more deliberate, and spent only with what brings us joy. We have learned so much from this journey. Life is short, really short. The seeds we tend are those that will thrive. Happiness and family are what matter most.
As for our main man, Carter? He is doing incredibly well. If you follow me on social media, you know that we have been spending our summer cheering on the Atlanta Braves at weekly home games, traveling to see dear friends, and spending time at home.
But a complete update on Carter’s post-transplant life has been complicated to put into words: we have, unfortunately, hit many of the fine-print roadblocks along the way. It makes us trepidatious to share positivity for fear of more bumps.
Just after celebrating Carter officially being in remission from lymphoma (PTLD) in March, he was diagnosed with a nasty bout of upper and lower GI Graft versus Host Disease (GvHD). This led to yet another hospital admission and many medications to get the GvHD under control. As of May, Carter has been clear of any GvHD.
More recently, Carter has had some abnormal lab results. He has been neutropenic for nearly a month again. We dealt with this for a year during his Aplastic Anemia journey, so while it wasn’t new to us, it was something that gave us pause.
Our team decided it was time to see what was happening since his peripheral lab draws couldn’t tell us. He had yet another bone marrow biopsy two weeks ago. We were concerned his graft may not be holding, and so we waited to learn if the pain, heartache, time, effort, and fight had drifted away. We waited— something we have become numb to— for those results.
We learned that his graft is still strong. His stem cells are working hard, and his marrow cellularity is now 75% — before the transplant, it was 5%. He remains in remission from the PTLD. Our team believes this neutropenia is caused by a delayed response to the chemotherapy regimen he received to treat his PTLD. We will wait and watch as this generally resolves on its own.
Thank the Lord! Our boy and his donor’s cells are still fighting hard. We will submit our request to meet his donor soon. We have been waiting for this day for what feels like a lifetime. Please pray with us that he feels led to meet Carter as well. We all have so much gratitude to share with him. Gratitude actually doesn’t seem like enough… How does one thank someone for giving them (their child) life? For saving them out of the goodness of their heart? We pray we are given the opportunity to try.
Our son is getting stronger every day. He is playing with neighbors, friends, and back to eleven-year-old boy fun! He participated in the summer PGA Juniors golf league. You’d never know the fight he has fought. His hair is back, and it’s gorgeous!
Carter is registered to begin 6th grade in person in August. We didn’t know if this day would come, and Carter could not be more excited to return to school.
We are also planning Carter’s FIRST REBIRTH-day party for August 26th. It is going to be a bash!
To all those that continue to reach out, thank you. To those who continue to pray for Carter and our family, thank you. To those who walk this with us daily, thank you. To our incredible medical team, thank you. What a journey this has been and continues to be.
Not too long ago, I wrote in my Gratitude update that we were excited to see what springtime would hold for Carter. Through rain, hardship, sunshine, and joy, we have arrived deep into the summer season. We are growing stronger where we were planted, and our Carter is in full bloom.