An Update on Radiation
Today was an important day, as it was Charlotte's fifth and final radiation treatment for her left knee and pelvis! We had treatment each day starting last Tuesday, with a break over the weekend to relax. We went back this morning for the final round, which went smoothly. Charlotte was rewarded with a new stuffy, a LEGO set, and she got to ring the gong at the UW Radiation Oncology Clinic!
The goal with the radiation was to replace the surgeries that Charlotte was originally going to have to remove the tumors in her knee and pelvis. Once we learned that the original treatment was not as effective as hoped, we had to change our plans. Surgery would have required a lengthy pause in the new chemotherapy to allow for recovery, and our team did not believe that was the best overall plan. Radiation allowed for relatively quick treatment, with hopefully a similar efficacy at killing the tumors.
The most challenging part was the initial set of scans the team needed to build a plan for how to setup the treatment. The radiation is a tightly focused beam, and they want to only target the tumors, and minimize the amount of healthy tissue or organs exposed. I did ask if there was any chance of radiation-based superpowers developing, like the Hulk or Spider-Man, but I was told it was not likely (keeping my fingers crossed though). In order for the treatment to be effective, the team needs to get good scans of the tumors and build a simulation of how to position the beams to be the most effective. This requires the patient to be very still during the scanning process, during which they also create a mold of her body to help with future positioning.
The first attempt at getting the scans was a challenge. Radiation treatment was done at UW instead of Seattle Children's and right away we could tell Charlotte was uncomfortable in the new environment. You can really see the difference between the teams that work mostly with adults compared to the team at Children's, and though they certainly were well-meaning, Charlotte was feeling anxious about the treatment and their approach. We attempted to comfort her as best we could so she could be still and get good scans, but Lauren and I couldn't be in the room while scans were happening, and the team quickly let us know that they weren't going to get good data with how uncomfortable she was. It didn't make sense to keep trying while she was so anxious, so we had to reschedule the scans for a week later with anesthesia.
Trying the scans with anesthesia was exactly the answer we needed, as the team was able to get their data quickly and work on a plan for treatment to start the following week. Given that Charlotte would need to be still during the treatment as well, we opted to use anesthesia each day. Charlotte tends to respond well to anesthesia and comes out of it pretty quickly, so it was an easy choice to use it for every treatment.
Charlotte started her actual radiation treatment a week after the scan. Each session was relatively quick, we typically started around 9 and were out of the hospital by 11. We braced ourselves for potential fatigue and soreness as side effects, but so far Charlotte hasn't had too much of either. She doesn't have much stamina for extended activity, as her cousins put to the test, but for the most part she's been weathering the side effects better than expected.
We're looking forward to another week off of treatment to enjoy Christmas and Charlotte's birthday. We're extremely grateful to our care team for working with us on scheduling to make sure we can make Charlotte's birthday feel special.
We want to extend our deepest appreciation to every member of Team Charlotte who has been supporting us through this. Every message, meal, gift, prayer, coffee, walk, and brief escape has been so helpful to three of us. We feel very fortunate to have this community lifting us up. Wishing every member of Team Charlotte a wonderful Holiday Season and a Happy 2026!