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2017 Symptoms Begin

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.

By the time Anya and her father, Jeff Magnuson, arrived at Mayo, Anya was experiencing severe neurological symptoms. To relieve the pressure in her brain (or intercranial hypertension), she underwent a ventriculoperitoneal shunt placement and a brain biopsy. It proved to be yet another inconclusive test in an ever-growing series of them. Meanwhile, with her doctors suspecting fungal meningitis, Anya was placed on antifungal medications.

“At some point,” Colleen recalls, “we counted and realized she’d had 35 lumbar punctures.” And still, a diagnosis proved elusive. Meanwhile, Anya — determined to continue living her life as best she could — returned to school at ASU. She did a photojournalism internship at The Oklahoman and another at the Arizona Republic. She took a reporting trip to Lima, Peru.

She graduated, despite the emergence of a new symptom: numbness in her feet and toes, until eventually, Anya could barely walk.

2018 Surgeries and Speculation

2019 A Surprising Diagnosis

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.

Spinal Scan

2Source: Cleveland Clinic

By the time the pandemic hit in March 2020, Anya — by then 21 years old — was in dire health. Doctors were at a loss as options and time ran out.

Over the prior two years, she’d endured four brain surgeries, 35 lumbar punctures, and 11 combined weeks of hospitalization. She’d been treated for fungal meningitis, intercranial hypertension, neurosarcoidosis, and, finally, ECD. As treatment after treatment failed, her care team began to question whether she had ECD at all and ordered yet another biopsy. At the same time, they also sent DNA from her tumor for another round of genetic sequencing.

The results changed everything.

This time, not only did the biopsy confirm the ECD diagnosis, but the sequencing also revealed something new: a genetic variant of unknown significance (VUS) that had never been reported before. Armed with this knowledge, Dr. Abeykoon and his colleagues — including Dr. Ronald Go, Dr. Thomas Witzig, and an extensive team of specialists — identified a course of drugs used for a different type of cancer that could potentially treat Anya.

2020 A Last Hope


2021 Looking Forwad

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.


Dr. Abeykoon is the recipient of three Merit Awards through Conquer Cancer and a prestigious Conquer Cancer Young Investigator Award. His areas of focus are hematology and medical oncology.


My award research focused on finding new treatment strategies for patients with lymphoma. As a result of the new treatment we found, we were able to open an investigator-initiated clinical trial for patients with lymphoma and histiocytic cancers, such as the cancer Anya has. More importantly, the research done under this award enabled me to learn basic science techniques and acquire unique translational research skills. This helped me to recognize unique mutations in the cancer Anya has and to formulate an effective and novel treatment strategy for her.

The award opened a door for us to formulate a great team of scientists, mentors, and clinicians who’ve subsequently helped many patients like Anya by formulating new personalized treatment strategies. It’s also important to note that this team, led by Dr. Witzig, Dr. Go and Dr. Lasho, made Anya’s treatment and her recovery a true possibility. Because of this team, we can now ask a question in the clinic, bring the question to the lab to find answers, and go back to the clinic to serve the patient with the answers. Further, the collaborations made with Mayo Clinic Core facilities and access to cutting-edge genomic sequencing techniques became a linchpin to the success we experienced in Anya’s story.

It’s always unnerving when we realize we might have reached the end of available treatments for any given patient. To keep pushing forward takes perseverance, grit, and persistence. When we first discovered a variant of unknown significance in the genetic analysis of Anya’s tumor, we immediately asked if it might lead to new treatment possibilities, and we worked as a team to find out.

Eventually, this teamwork evolved from the bench to the bedside when we were able to treat patients with a drug that had never been used in hematologic cancers but is FDA-approved to treat solid tumors. These efforts brought a complete recovery to Anya, which made us all happy and allowed us to realize our primary objective in becoming physicians and scientists: to serve humanity.

Anya and Abeykoon


From Disappointment to Discovery

In this Your Stories podcast episode, Anya’s mother, Colleen, and one of Anya's oncologists, Dr. Jithma Abeykoon, discuss with host Dr. Mark Lewis the complexities of uncovering her diagnosis, the disappointment of failed treatments, and the relief and surprise that came when they discovered a treatment option that finally worked.




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