Reframe to Chronic Disease
- Jess Dyroff
- Aug 20
- 1 min read
We've finished our consult tour and have met with 4 teams: National (DC), CHoP (PHI), CHoC (DEN) and the Radiology-Oncology team here at KUMed handling pediatric radiation.
Non-medical FUN included seeing some of our greatest friends and their families, the Capitol, the Hope Diamond at the Smithsonian, and a Phillies game where the boys got to run the bases after the game.
Medical teams were all incredible, and their passion is unmistakable.
Each team offered slightly different approaches to treatment, and all teams were clear that treatment options are not an easy or obvious decision for families to make.
Ultimately, we are feeling the best about the Colorado team.
Dr. Todd Hankinson in CO has an attitude towards craniopharyngioma that resonates most with us. He was quick to say that he believes it should be treated as managing a chronic lifelong disease instead of a cure. The reframe of chronic disease is somehow a much more manageable statement than "reoccurring brain tumor".
Since Sam still has vision and endocrine function, we hope to maximize the timeline of hormonal function by keeping interventions as minimally invasive as possible for now. We may still wind up needing the more invasive treatments later, but we'll cross those bridges when we get there.
As we inch closer to a treatment plan which will include brain surgery this fall, we are feeling strongly supported by the brilliant medical teams we have spoken with, our family and incredible friends. There is a path forward and we know it is one rooted in the best outcomes and love for Sam.
