Journal entry by Krissy Nelson-Walling —
A lot has happened since last our update!
Spencer has successfully completed both transplants, 12 rounds of radiation & round 1 of immunotherapy ♥️
He took a bit to recover from the second transplant. The mucositis was much worse than the first round. Soon after he sailed through radiation! He actually looked forward to our early morning wake ups and trips to the hospital! He made a lot of friends. He’s truly blossomed into a socializer. They all loved him & he loved them. He still plays ‘radiation’ with his sisters and talks them through the process that they’re getting a picture of their belly and they can have a snack after. Sometimes he gives them ‘shots’ ensuring them not to worry, it won’t hurt. He’s so resilient & brave.
Our last scans, after the completion of radiation, showed that of the 3 spots still remaining - 2 we’re completely gone and the one remaining had shrunk by over 1/2! The goal is no evidence of disease after immunotherapy. If the spot still remains, it will be believed to be matured tumor (benign) and we will keep an eye on it.
We are currently in Boston doing round 2 of immunotherapy. Round 1 was rocky. It took a while to find the right doses of dilaudid, ketamine & gabapentin to keep him alert but comfortable. After day 3 he was doing so much better. This time we started off on the doses that we ended on and he’s been happy & energetic so far!
In between treatments we’ve been staying busy outdoors! He’s been spoiled having his sisters home all day, everyday! We’ve been social distancing for the last few months. In reality, we’ve been social distancing the last year so we had a pretty solid routine down when COVID hit. We’ve been doing outdoor visiting with grandparents. As much as we are taking precautions, we also feel it’s important to see them. It brings Spencer so much happiness and that in return helps him heal.
We hope you’re all doing well & staying safe! Thank you all for checking in on us, sending Spencer cards & packages and riding along on this journey with us ♥️I