Emily was diagnosed with an ependymoma, a rare cancer of the central nervous system. Only about 1,000 adults a year in the United States are diagnosed with this type of cancer.

Story by: David Steen Martin on June 15, 2020

When Emily Carr began experiencing a baffling array of symptoms — pain when she stood up, dizziness when she leaned over, severe migraines and memory loss — she thought it could be a brain tumor.

A trip to her primary care doctor and then an ear, nose and throat specialist didn’t bring a diagnosis. Six weeks of physical therapy for vertigo didn’t help, either.

Emily had other symptoms, too. Hearing loss that came and went. Hiccups. Shooting pain in her neck and the top of her head.

“I kept telling people I think I have a brain tumor,” Emily said.

Her primary care doctor scheduled a magnetic resonance imaging (MRI) scan. Sure enough, Emily had a tumor on her spinal cord and brain stem.

“It was surreal. Your whole life changes in a second,” Emily said.

A rare, but highly survivable cancer

Emily was diagnosed with an ependymoma, a rare cancer of the central nervous system. Only about 1,000 adults a year in the United States are diagnosed with this type of cancer. The overall five-year survival rate for ependymoma is almost 85%, and better than 90% for adults ages 20 to 44.

Emily and her husband, Michael, went to see neurosurgeon David A. Sun, M.D., Ph.D., and radiation oncologist Aaron C. Spalding, M.D., Ph.D., at the Brain Tumor Center, a collaboration of Norton Neuroscience Institute and Norton Cancer Institute.

Drs. Sun and Spalding help lead the Brain Tumor Center — a multidisciplinary team of neurosurgeons, radiation oncologists, neuro-oncologists, neuroradiation specialists, neuropathologists, speech therapists, physical therapists, a behavioral oncologist and a nurse who serves as a patient navigator.

Emily remembered Dr. Spalding describing her situation as “a good tumor in a bad spot.” Part of her tumor was on her brainstem, which is both incredibly delicate and responsible for such basic functions as breathing.

“Dr. Sun said, ‘The tumor is a weed in your brain. You can’t just pull the weed out of the brainstem. It’s too dangerous. You have to radiate the roots,’” Emily said.

Dr. Sun performed brain surgery on Emily, removing 99% of the tumor but leaving the 1% on her brainstem.

“He saved my life. I’m forever grateful to him and Dr. Spalding,” Emily said.

Seeing the brain tumor multidisciplinary team in a single day

To kill the cancer on her brainstem, Emily underwent six weeks of radiotherapy, five days a week, with Dr. Spalding.

Between surgery and the start of radiation, Emily saw the other members of the Brain Tumor Center team.

“They cover everything, top to bottom. The whole day, I literally saw everyone in their office. They wanted to see how I was doing,” Emily said.

Emily thought about going out of state for her cancer treatment, but decided against it and is glad she stayed in Louisville.

“I loved my doctors. They’re my dream team. The care I got at Norton, I felt like a VIP,” she said. “At Norton, you get a whole team of people, and they all communicate with you. Go somewhere else, and they don’t have that.”

Evicting ‘Nerval’ the tumor

Emily tried to keep her sense of humor throughout. She hated the word “tumor” so she decided to give it a name. She came up with Nerval “out of nowhere.” She’d imagine Nerval getting kicked out of her brain and had her brother, an artist, draw a picture of Nerval as a person being evicted.

Emily’s last treatment was Jan. 31, 2017, and so far, life has imitated art. Emily’s surgery and radiation were a success. Her tumor was, in fact, evicted.

Each year on Jan. 31, her “cancerversary,” Michael presents her with a cake to celebrate.

Compassionate cancer care

The mother of three boys, Emily works as a research coordinator in the office of Undergraduate Medical Education at the University of Louisville School of Medicine, where medical students are taught communication skills including how to give a patient bad news.

Emily said her experience gave her a firsthand experience of what compassionate care looks like — and how it affects not only patients, but their family, co-workers and friends.

“Cancer is a lonely place, but when you lean on others, it does help,” said Emily, who began meditating when she received her cancer diagnosis and made daily lists of what she was grateful for. “This made me realize even though I had cancer there were still many positive things in my life

Emily has joined ependymoma support groups and also undergoes scans twice a year to ensure the tumor has not returned.

“My story is not done. Cancer has been a chapter in my book, but it’s not the only one,” she said.

Emily’s advice to other ependymoma patients is to keep hope no matter what and take life one day at a time.

“Cancer teaches you YOLO [you only live once],” Emily said, adding that the experience also taught something else: Trust her intuition. “As a cancer patient, you know your own body. Keep going until you find an answer.”