Building a Team for a Rare Diagnosis

At 10 years old, Ella spent a lot of time on the softball field. She loved the game, her teammates, and her friends.

She was used to the bumps and bruises that sometimes come with being an athlete. So, when she fell and hurt her tailbone at a friend’s house, she was not worried. She was sure that rest would help the pain go away.

Instead, her back began to hurt.

And the pain got worse.

Weeks passed. Ella saw her pediatrician. She went to physical therapy.

And still the pain got worse.

At night, it was so intense that she could not sleep.

“It was every single night,” her dad, Stephen, says. “We’d be up all night.”

Magnetic resonance imaging (MRI) finally revealed the cause. Ella had a tumor in her spine. Doctors gave her a preliminary diagnosis of myxopapillary ependymoma, a rare spinal tumor.

Finding answers

Ella’s mom, Wendy, wanted a confirmed diagnosis. And she wanted one quickly. She called St. Jude Children’s Research Hospital. Tabatha Doyle, RN, of the Brain and Spinal Cord Tumor Treatment Program, talked with her about the family’s options.

“I’ll never forget her,” Wendy says. “She was so, so sweet.”

Doyle is often one of the first members of the St. Jude care team to talk with families seeking help from the program. She listens to what has happened, discusses what St. Jude may be able to offer, and helps families understand the steps involved in getting a second opinion or seeking treatment.

A team with experience

The St. Jude Brain and Spinal Cord Tumor Treatment Program cares for children with many rare and complex tumors. This team brings together specialists who have a deep understanding of these conditions. They can review a child’s diagnosis and help plan care that fits their needs.

For Ella’s family, that experience mattered. After talking with Doyle, they decided to seek treatment at St. Jude.

First, they needed a physician referral. Next, Doyle helped the family and care team gather Ella’s medical records and imaging test results.

Once Ella got to Memphis, Doyle helped arrange the scans and appointments needed to plan Ella’s treatment. She made sure Ella and her family felt like part of the care team.

Part of the team

Ella’s care began with surgery. When the tumor returned, she had another surgery and proton therapy. Later, doctors found new tumors in her spine and brain, leading to more surgery and radiation.

With each recurrence, Ella and her family have returned to a team that knows them and understands Ella’s cancer. The team offers her encouragement and support, something Ella is happy to pass along to others whenever she can.

“You might be scared,” Ella says, “but at the end, it’s OK. You’ll get through it.”