Hutton finished her SBRT (Stereotactic Body Radiation Therapy) this week. SBRT is a type of radiation that uses precisely focused radiation beams to treat tumors. The beams come from different angles and give a high dose of radiation to the tumor while helping protect nearby healthy tissue. The benefit of SBRT is that, since it is a higher dose, it is done in fewer sessions than typical radiation. Hutton’s SBRT on her lungs was 5 sessions, and her traditional radiation she did last year on her pelvis was 6 weeks.
We stayed in LA for these treatments again, which was the best decision. We were able to go to museums and hang out on the UCLA campus on Hutton’s “off” day, and it was such a blessing. The drive up and back really wears on all of us, so staying up there was the best decision.
Typically, we would scan every 6-8 weeks to monitor Hutton’s tumors in her lungs and in her pelvis. With immunotherapy and radiation both creating false positives, we likely will not have a clear answer from a scan until March or April. Radiation does not stop working the moment the last session ends, so in the weeks and months that follow, the treated tissues remain intensely inflamed and swollen as they try to heal, which shows up as “hot” on scans. Basically, healing tissue looks bright or active on imaging scans just like remaining or returning cancer cells would.
As you can imagine, this is extremely nerve-wracking for us. Hutton is feeling GREAT! Her hair is growing, she is gaining weight, she is just feeling good. Immunotherapy does not have the same bad side effects as traditional chemo does, so she is feeling so much better. She still has a lot of the chemo side effects. Food aversions, water aversions (only certain kinds of water are acceptable), constant need for ice chips (we get bags of “good ice” from Chick-fil-A), super sensitive to sounds, etc., but overall she feels SO GOOD!
One of the side effects of radiation to her lungs is a cough, which Hutton developed after her first treatment, and as parents of a kid with cancer who absolutely CANNOT get sick, hearing her cough is the most nerve-wracking sound of all time. We know this is a side effect; we know she is not sick, but hearing her cough is next-level STRESS. We have spent 2 years trying to keep her from getting sick, so hearing the cough is not something we are used to, and even though we know it’s a side effect, every time she coughs is triggering.
Hutton will continue her treatments, and her next scan is in about 8 weeks…8 weeks of monitoring, waiting, treating, and praying.
