My Cancer Counts: Evan’s Hope for a Better Way

When Evan Jones was just nine years old, he learned a word most kids his age couldn’t even spell: osteosarcoma. He and his family would soon learn that, while rare, osteosarcoma is the most common type of bone cancer in children and adolescents. It is also the most deadly.

One in three children diagnosed with osteosarcoma will not survive beyond five years. We know that because of data from population-based cancer registries.

Those data represent real people – people with stories like Evan’s.  But to the people and families behind the data things may look different.

“Childhood cancer in particular does not feel rare when the oncology units are so full there is a wait time to get chemotherapy,” Evan writes.

And that chemotherapy was rough on a nine-year-old boy.

Treatment regimens for childhood cancer are often aggressive and toxic, developed in an era when the priority was simple and urgent: survival at any cost. Little was known about the long-term effects on a child’s developing body.

Population-based cancer data ensures that experiences like Evan’s are not lost. It transforms survival into knowledge, and knowledge into better care. It helps ensure that the next nine-year-old diagnosed with osteosarcoma not only survives—but thrives. Today, efforts like the National Childhood Cancer Registry are helping researchers access data that may provide new insights into these outcomes at a population level.

“I was lucky to have localized osteosarcoma,” Evan says. “Most kids at Norton Children’s were not so lucky. The over 50 years old chemo protocol was brutal, and I hope continued funding of research can yield safer treatments and better outcomes for all.”

Evan points to the improvements in outcomes for adult cancers as proof of the impact research can have: “Funding childhood cancer research and passing legislation that helps kids…will improve outcomes for kids like me and the many who will be diagnosed in the future. There is a better way.”

Because cancer care should be measured not just by years of life gained, but by the lives those years allow people to live

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Population-based cancer data, collected and curated by cancer registries, is the only source that counts every cancer in the US and Canada. That means everyone is represented, and every person affected by cancer makes a difference in the fight against cancer. MY CANCER COUNTS aims to raise public awareness of the value of population-based cancer data through the sharing of personal stories of the people behind the data. NAACCR is deeply grateful to the individuals who have shared their stories as part of MY CANCER COUNTS.