On May 17, 2022, we got the phone call no parent wants to get. Our youngest son, Tristan, had leukemia. He was 25 and in Denver at the time. My wife and I flew out there immediately. I’m happy to report that today, he is a survivor and thriving again. He was an elite rock climber and a software engineer when he got sick. He was back climbing at the elite level within nine months. He’s now climbing stronger than ever. And he’s reinvented himself into a darn good ceramic artist.
There are many details about Tristan’s journey, too many to share right now. I want to highlight some big ways Blood Cancer United supported him and our family throughout.
It turned out that Tristan’s doctor in Denver, Dr. Dan Pollyea, is one of the leading leukemia specialists and researchers in the world. Tristan had a very aggressive form of leukemia, acute myeloid leukemia (AML). Dr. Pollyea and his team actually invented the standard of care for treating AML back in 2018. And, their work was funded by Blood Cancer United research dollars. This standard of care became one of Tristan’s critical treatments.
But it didn’t stop there. Tristan had a rare combination of genetic mutations for which there was no apparent cure (specifically, FLT3 and RUNX1). His odds for survival were close to 0%. That’s Zero with a capital Z. Enter Blood Cancer United research for a second time. Pollyea and his network of physician scientists (which I assume many were also funded by Blood Cancer United) looked into a small-scale, experimental trial that showed a glimmer of hope. When I say small scale, we’re talking around 12 patients compared to Moderna’s vaccine trial of 30,000. When I say experimental, it was pre-FDA approval. Should he try it? It was a no-brainer for him. There weren’t any other choices. It worked! The combination of therapies pushed Tristan’s cancer into remission enough for him to get a life-saving stem cell transplant.
By day two, the realities were sinking in. We were feeling afraid, confused, scared, and overwhelmed. We felt like we were on our own. We felt isolated. Tristan’s care team told us about Blood Cancer United Patient Services and the support they provide. We had no idea resources like that were available for us. We no longer felt alone and isolated.
Blood Cancer United offers a range of services to support individuals and families affected by blood cancers. They provide financial assistance to help cover treatment costs and travel expenses. They offer educational resources on blood cancers and treatment options through brochures, online materials, and programs. Support services include peer-to-peer support, patient and caregiver groups, and access to social workers for guidance and emotional support.
Blood Cancer United also advocates for policies to improve access to care and assists patients in finding and enrolling in clinical trials to access cutting-edge treatments. These services aim to enhance the quality of life for patients and their families throughout their cancer journey. A clear example is their advocacy to remove medical debt from people’s credit scores. No one should have to take a hit for borrowing money to save their lives.
Blood Cancer United's research funding had a direct impact on saving Tristan’s life. Blood Cancer United's advancements are responsible for the blood cancer survival rate doubling and tripling, in some cases, even quadrupling. Thank you!
I now serve as a Trustee of Blood Cancer United New England, and last ski season, I dreamt up the Vertical Challenge to Cure Blood Cancer. Simple goal: ski 100 vertical miles, build awareness, and raise as much money as I can. I ended the season at 125 miles (660,000 vertical feet, about halfway to the International Space Station!) and raised $38,000. And I broke both boots the day I reached 100 miles. Go figure! This season, I'm back as Blood Cancer United's Vertical Challenge Ambassador (fancy title!)
My personal goals this season are:
1) Ski at least 660,000 vertical feet . . . or should I shoot for 1 million?
2) Raise as much money as I can.
3) Recruit more folks to join the Vertical Challenge to Cure Blood Cancer.
Chesley
Family member and supporter
