Anya's Story  |  Meet Dr. Abeykoon  |  Podcast  |  Donate

The symptoms began that Fall, with debilitating headaches. Then Anya Magnuson’s eyesight started to falter. A lumbar puncture showed she had meningitis. And over the next few weeks, her symptoms grew in severity until the 19-year-old college student could hardly eat or move her head without pain.

She had been driven all her life, says her mother, Colleen Kelly. A National Merit Scholar who taught herself Spanish, Anya had been known to work 80-hour weeks in the summers, was an all-conference volleyball player, and editor of her high school yearbook. As a photojournalism student at Arizona State University (ASU), she maintained a 4.0 GPA and covered healthcare for the homeless in downtown Phoenix. “She was determined to take the world by storm,” Colleen says. “She was unstoppable.”

By December 2017 — with her illness still unidentified and no idea of what was going on or what to expect — Anya was admitted to the Mayo Clinic in Minnesota.

Given this new symptom and its impact on her ability to walk, Anya's medical team ordered an MRI. What the scan revealed shocked everyone, including her care team. The image showed a series of masses lining Anya's spine, necessitating yet another biopsy. Instead of their initial suspicions of neurosarcoidosis, the results showed an alarmingly high level of white blood cells (or histiocytes), a hallmark symptom of Erdheim-Chester Disease (ECD). A slow-growing blood cancer — and an exceptionally rare one — ECD was first identified in 1930. Since then, only about 800 cases have been reported.²

As with many rare diseases, Anya’s care team now faced a troubling challenge: With so few cases and so little research to consult, the treatment options for ECD were extremely — even disturbingly — limited. And this is the point at which Dr. Jithma Abeykoon, a Conquer Cancer-funded researcher and oncologist, joined Anya's care team.

Anya began taking the newly identified oral treatment right away, and, within just a few weeks, her symptoms had started to improve. Her vision got better. She could walk again. She even managed to paddleboard a bit that summer. Still, Colleen says, their optimism was tempered by caution and, at times, skepticism. And so, when Dr. Abeykoon told Anya and her mother that the treatment was working, they didn’t know what to say.

“We both just sat there stone-faced. And we were just so shell-shocked from the last two and a half years that we were just like, ‘Okay, good to know,’” Colleen recalls, laughing slightly. “I remember him saying, ‘This is really good news,’ but we were literally too scared to trust it.”

Now — just over three years since that treatment took hold — Anya barely thinks about her cancer. She works. She lives independently. She goes to the gym and volunteers at a local food pantry. She still takes medication to keep the cancer at bay, and she’ll probably always have to. But it no longer dominates her life or dictates her future.

And Dr. Abeykoon is expanding his research to reach more patients. He recently co-launched a phase I clinical trial to assess the effectiveness of a promising treatment approach for patients whose blood cancers are recurrent or resistant. He’s also helping lead another study to evaluate an emerging drug that can target the same genetic mutation linked to Anya’s ECD.