Young Patient Becomes First at Mayo to Survive Rare, Aggressive Brain Cancer

When Addyson Cordes was diagnosed with a rare and aggressive brain tumor at 13 months of age, her care team at Mayo Clinic didn’t expect her to live past her second birthday.

Addyson Cordes is a fighter. Diagnosed at 13 months old with a "rare and aggressive" brain tumor (atypical teratoid rhabdoid), Allyson was put through an equally aggressive treatment plan that included neurosurgery, chemotherapy, and proton beam therapy — all before her third birthday. And today, as KAAL-TV reports,"among the handful of kids treated with this kind of cancer at Mayo Clinic," Addyson, now age 5, is "the first to survive."

"She's in remission," Addyson's doctor, Amulya Nageswara Rao, M.B.B.S., director of Mayo's Pediatric Brain Tumor Clinic, tells the station. "She's three years out … and all her scans are very clean and she's doing very well."

A recent feature story in Mayo Clinic Alumni magazine details just how far away that kind of outcome seemed when Addyson's parents, Michele Zidlicky and Nathan Cordes, first received her diagnosis. "When Addy was diagnosed, we faced having only a few months left with her," Michele tells the magazine. "Dr. Rao told us it wasn't an easily treatable cancer, and it had already spread to the spinal fluid and spinal cord. She said it was the fourth [atypical teratoid rhabdoid] case Mayo had seen, and the other children hadn't survived."

That didn't stop Addyson's care team from doing everything they could to help her. After neurosurgery, Addyson went through "seven rounds of inpatient chemotherapy as part of a clinical trial" at Mayo, the last three of which "included high-dose stem cell chemotherapy" (also known as an autologous bone marrow transplant). Then came extensive rehab work with Mayo's Pediatric Rehabilitation specialists, who helped Addyson regain the function she had lost during treatment. "Although she'd begun walking at 9 months old, she lost that function as a result of surgery and had to start over," Mayo Clinic Alumni reports.

When she was 18 months old, Addyson's parents took her out of state to undergo proton beam therapy. (Mayo's Proton Beam Therapy Program in Minnesota wasn't yet open at the time.) And it was there, Mayo Clinic Alumni reports, that things finally started to look up for Addyson, after a post-treatment scan showed the cancer was no longer in her spinal fluid. "When Addy finished treatment, Dr. Rao said 'She's doing well. It's time to go live your life,'" Michele Zidlicky tells the magazine. "We're living life now and just want to enjoy Addy and experience things she hasn't experienced … We know Addy can get her cancer back or secondary cancer, but we take it a day at a time and live it to the fullest."

You can read more of Addyson's story here and here. Then, let us know what you think by sharing your comments below and by sharing this story with others using the social media tools.