Happy Rebirth Day, Carter!
Friday, August 26, 2022, day 0, was a morning full of hope, happiness, and thankfulness. Carter woke feeling better than he had on day -1. We spent the morning preparing for our FSU and Braves-themed T-Day celebration. His donor’s cells were being processed, and we were given a transplant time of 3 pm.
Unfortunately, around 2 pm, Carter started complaining of pain in his hands. They were a bit swollen and red. The team had a couple of different theories as to what could be causing it. We knew which one it was. We were prepped intensively for this in Boston during his IST, his first round of ATG. Carter had serum sickness.
We continued with his transplant infusion at approximately 3:30 pm. We took a photo of and with our miracle cells from his donor. We tried to celebrate Carter’s rebirth despite his pain.
As the hours went on, his joint pain and swelling increased, making him quite miserable. The decision was made to move forward with his nasogastric tube (NG tube) placement to be proactive since he was already feeling unwell, and we knew mucositis was coming post-chemotherapy.
As of today, day +2, Carter is still in great pain from the serum sickness. His mucositis has also set in, but it is being managed with some medications to decrease his discomfort. Thankfully, he is tolerating his NG tube feedings well, and the medical team has been able to keep increasing his feed amounts to keep his nutrition up. The serum sickness will subside as time goes on. It can take some time, however. He has been sleeping for nearly two days at this point.
We entered what is known as the “Dark Days” sooner than anticipated due to the serum sickness, yet we remain focused on our goals of keeping Carter comfortable and seeing stem cell growth in the next few weeks. We are choosing to stay hopeful and thankful for the gift of the cells Carter received. Yes, we are nervous wrecks, but we will get through these days with His grace, each other, our medical team, and the prayers of our village of supporters.
We will have our celebration when the time is right. Until then, I am holding on to the fantastic and thoughtful gifts sent and the unbelievable videos of well wishes from family, friends, countless athletes from FSU, and the Braves manager. He will be thrilled to see everything.
Please continue to lift Carter in your prayers.