Colton’s Story: Fighting EHE with Strength, Hope, and Connection
From the very beginning, Colton’s life was marked by resilience.
He and his twin brother, Bryson, were born seven weeks early on August 13, 2012. After spending a month in the NICU, Colton faced another serious hurdle at just seven weeks old, when he was admitted to the PICU with failure to thrive and severe prematurity-related anemia. During that hospitalization, brain imaging captured what would later be understood as his tumor—but at the time, it was missed.
Years later, in June 2018, Colton’s family found a lump on the back of his head. An emergency room visit provided reassurance that it was likely a cyst and that it would be a simple removal. The surgery took place in July. Then, on August 1, everything changed.
Pathology revealed that the lump was not a cyst, but epithelioid hemangioendothelioma (EHE), an extraordinarily rare sarcoma.
For Colton’s family, the shock of that diagnosis was immense. What had seemed straightforward suddenly became something far more frightening and uncertain. Yet after treatment, Colton was declared to have no evidence of disease, and for four years, his family was able to breathe a little easier.
Then, after those four years, EHE returned.
PET scans revealed tumors in Colton’s liver and sacrum. Because of their location, surgical removal was not an option. Instead, his family was told the best course was ablation in hopes of destroying the tumors and controlling the disease. On February 1, 2023, Colton underwent a 4.5-hour procedure with a pediatric specialist at Children’s Healthcare of Atlanta.
As of February 2026, his liver and sacrum remain clear. But once again, the family is living with uncertainty. Scans are now showing a small area of concern in Colton’s brain—the same place where his first tumor was removed in 2018. For now, his doctors are watching closely and planning repeat imaging to see whether it changes.
That pattern—relief, recurrence, and renewed waiting—has shaped much of Colton’s EHE journey. His family knows the fear of hearing that it may be back. They know what it is to watch a child absorb life-changing news no child should have to carry.
One of the hardest moments, they shared, has been “seeing the heartbreak on his face” when the cancer returned in 2023 and again when scans in February 2026 suggested it might be back.
And yet Colton’s story is not defined only by diagnosis, procedures, and scans. It is also a story of who he is beyond EHE.
Today, Colton is a 4.0 student who loves math and history. He has been accepted into the International Baccalaureate program for high school and plans to compete on the track and field team. He wants to become a doctor one day so he can help other children the way he has been helped.
In every part of his life, he has shown the same steady determination that has carried him since birth. His family describes him as someone who has refused to let cancer define him.
That perspective matters. So does connection.
Like many families affected by EHE, Colton’s family found vital support through the EHE Facebook community. In a disease this rare, isolation can set in quickly. The feeling that no one nearby understands what you are facing can be overwhelming. But connection with others who know EHE firsthand can change that. Through the support group, Colton’s family found guidance, got connected with knowledgeable physicians, and felt less alone as they navigated difficult decisions.
For families new to EHE, one of the clearest lessons in Colton’s story is: do not try to navigate this disease by yourself.
His family encourages others to reach out, connect on social media, and seek doctors with real EHE experience so patients can get the best possible care. In a rare disease, community can be one of the most powerful ways to combat fear and isolation.
There have also been moments of joy and meaning along the way. One especially memorable high point came when Colton was made an airman for a day during a trip to Georgia for surgery—an experience that gave him something special to hold onto in the middle of a frightening time.
Even now, with uncertainty still ahead, Colton continues to move forward with courage. His story is one of recurrence, resilience, and hope—but also of family, community, and the importance of finding strength in one another.
EHE has undeniably rocked Colton’s family. But it has also shown them the power of persistence and connection. It has reminded them that even in a club no one ever wants to join, there are people ready to help carry the weight.
