Ellie Hanney has always been determined to keep up with her twin brother, Henry. For the first two years of their lives, they grew and developed at a similar pace. But in March 2017, Ellie’s parents noticed a change in her behavior.
“Her appetite completely disappeared,” said Ellie’s mother, Katie Hanney. “We took her to a gastroenterologist, who X-rayed her stomach. He said her loss of appetite didn’t bother him as much as the way she was walking. Her gait seemed ‘off.’ ”
This warranted a visit to University of Missouri Health Care pediatric neurologist Arayamparambil Anilkumar, MD, who ordered an MRI of Ellie’s brain.
“A couple weeks later, Ellie couldn’t walk up our stairs anymore,” Katie said. “That’s when we knew something major was going on.”
The MRI results confirmed Katie’s fears. Ellie had a large cancerous tumor on her brain stem, and fluid was building up inside her skull. The tumor needed to be removed as soon as possible and sent to pathologists for testing that would reveal the extent of Ellie’s cancer.
“The world fell out from underneath my feet,” Katie said.
May the force be with her
Ellie’s surgery occurred on May the Fourth — also known as Star Wars Day.
“I’m not even a Star Wars fan, but this was comforting to me,” Katie said. “I knew Ellie would have the force with her.”
During the 10-hour surgery, MU Health Care neurosurgeon Tomoko Tanaka, MD, removed as much of the tumor as possible. Toddlers have very thin skulls, so she had to be especially careful.
“We were able to safely remove about 70% of Ellie’s tumor,” Tanaka said. “But we also learned that her skull was thick enough for a second surgery that would allow us to remove more of it.”
A few days later, Tanaka successfully performed the second surgery.
“Dr. Tanaka did a wonderful job explaining what she had done and what she had found,” Katie said. “She didn’t speak a bunch of medical talk at us. She made sure we understood what was going on.”
By now, pathologists had identified the tumor as ependymoma — a type of tumor that can form in the brain or spinal cord and is most common in young children. The next step for Ellie would be chemotherapy and radiation.
Motivated to recover
Ellie traveled to St. Louis to undergo 30 rounds of proton beam radiation, a treatment not available locally. Then, she was transferred to an inpatient rehabilitation facility for physical, speech and occupational therapy.
“One thing that Ellie has always displayed is internal motivation,” Katie said. “She never had to be coaxed or bribed during her therapy sessions. She never needed any external motivators because she always had it in her. This girl has such an independent spirit.”
Six months after arriving in St. Louis, Ellie grew strong enough to walk with a walker, and her lungs healed enough to allow her to breathe without a ventilator. She returned to Columbia, but her work was far from over.
Ellie’s new routine consisted of regular visits to MU Health Care’s Children’s Therapy Center and appointments with Tanaka, pediatric pulmonologist Zarah Ner, MD, and pediatric endocrinologist Amie VanMorlan, MD. She received an MRI every three months to ensure she was still tumor-free. Her first few scans came back clean, but in November 2018, the family learned the cancer had returned.
“It was a big shock,” Katie said. “We were so sad that poor Ellie would need to go through this again. People kept asking us if we’d go to St. Louis for the surgery, but my reply was always, ‘The only surgeon I ever want operating on my child is Dr. Tanaka.’ She is a master of her art.”
This tumor was much smaller and easier to remove than the first tumor.
“Ellie recovered much more quickly from this surgery,” Katie said. “That evening, she was able to sit up on her own, and she was able to stand up the next day. The surgery was on a Tuesday, and Ellie was back at school the following Monday.”
After more radiation treatments, Ellie resumed her regular doctor visits. This summer, she enrolled in the “Tiger Intensive” program at MU Health Care’s Children’s Therapy Center, which consists of daily visits to the clinic for long sessions with a variety of therapists.
Now 4 years old, Ellie’s motivation continues to burn strong. She is getting stronger every day, and she is back to playing with her twin brother, Henry, and big brother, Ben.
“Ellie is an incredible, empathetic girl who is so much fun to be around,” Katie said. “Since the cancer came back once, it’s likely it will come back again. If it does, we will meet it head-on. This disease will not run our lives. We are moving forward with a positive attitude, because if we don't, the cancer wins. And we're not going to let it win.”