Nov 27, 2023, 3:19:52 PM CST Nov 27, 2023, 5:07:34 PM CST

Kailey’s story: How determination and an expert care team helps her thrive

Kailey going on a run Kailey going on a run

Erica's family moved to Dallas for her job in 2020. Looking back, she feels like it was divine intervention — bringing her family to one of the few places in the world where they could access specialized care for the rare condition her daughter Kailey would be diagnosed with.

God knew this is where we needed to be.
Erica, patient parent

Unexplained back pain

When 8-year-old Kailey woke up in the middle of the night with bad back pain, her dad Joseph soothed her and hoped she'd feel better in the morning. Instead the pain got worse, to the point where Kailey couldn't walk or sit comfortably.

Erica sought out an award-winning pediatric orthopedic doctor with a reputation for getting to the bottom of medical mysteries. His evaluation of Kailey was shocking: "I think she's just lazy."

Kailey was not lazy. She'd been running 5K races since she was 3 and regularly went on 20-mile bike rides. When Erica asked for an MRI multiple times, the doctor dismissed her requests. The experience left Kailey in tears and her parents suspecting that her child might have been treated differently had her skin been a different color.

Weeks later, Kailey's basketball coach approached her parents, worried about how often she fell down. And when she started randomly falling at school, they found a different doctor who ordered an MRI immediately. He then consulted his good friend Brett Whittemore, M.D., Pediatric Neurosurgeon at Children's Health℠. Dr. Whittemore told them to come to Children's Health right away.

The MRI revealed that Kailey had a tumor on her spine.

What they were up against

When Dr. Whittemore explained the next steps, he spoke directly to Kailey. In 8-year-old terms, he explained that this tumor was blocking the connection between her brain and her legs. He needed to do surgery to remove it.

"I've never seen a pediatrician talk to a child like that — like a whole, real person with full autonomy and control and dignity over her own body," Erica said.

He told Kailey he would do everything he could, but sometimes after the surgery, people had trouble talking and thinking. Many people had trouble walking and needed to be in a wheelchair. That's when Kailey realized that she was really sick and had lots of questions.

Kailey with her physician"The surgery is supposed to make me better. But it sounds like I might be worse because I could be in a wheelchair and have problems with my brain. So how is it making me better?" Kailey asked.

Dr. Whittemore gently explained that if they didn't do surgery, the tumor would eventually cause problems with walking and her brain anyway. By doing surgery now, it would lower the chances of those problems being permanent.

"I was really scared, but I felt a little better after Dr. Whittemore explained everything to me," Kailey said.

A 13-hour surgery

During Kailey's surgery, her parents watched as many patients came for surgery, then went home. By that evening, it was just Kailey's parents and one other mom.

"We kept each other company, and she told us her child has a very rare neurological disorder called neurofibromatosis type 2," Erica says. "Her child had several tumors on her brain and spinal cord, and she was still so positive."

After 13 hours, Dr. Whittemore walked around the corner.

"He looked so exhausted. And it occurred to me that for every hour I'd been panicking, he'd been doing everything he could to give my child the highest quality of life," Erica said. "And he told me 'no, you have the hardest job. You entrusted your most prized possession to strangers for all those hours.' Everything I felt during her surgery was nothing compared to the compassion he shared with us afterwards."

Spending Christmas in a neurosurgery ward during a pandemic

Kailey woke up with weakness in both arms and legs, and could not lift her legs off of the bed. She started physical therapy the next day, along with speech therapy, occupational therapy, and meeting with the Children's Health chaplain — which Kailey called "Jesus therapy." She got a little stronger each day.

"My birthday passed, Kailey's birthday passed. We ate Christmas dinner on the lawn outside of the inpatient unit because of COVID," Erica said. "We were living in a pediatric neurosurgery ward during a pandemic, but the care team and the other families we met made it a beautiful experience."

Three weeks later, the pathology report came back, providing information about what caused Kailey's tumor. They'd feared it might be cancer, but the report suggested something else.

Family photo with Kailey"I want you to meet with a doctor here, who specializes in a rare neurological disease that most people have never heard of. It's called neurofibromatosis type 2," Dr. Whittemore told them.

Except her parents had heard of it, on the day of Kailey's surgery talking to the only other mom in the waiting room. Her child had it — and her child was doing well.

Kailey and her parents soon met Laura Kleese, M.D., one of the few neurofibromatosis specialists in the country. She explained that the disease happens because of genetic change that causes tumors, most often benign, on the brain and spinal cord. These tumors likely wouldn't spread to other organs like cancerous tumors, but there was no way to stop new ones from growing. They may affect Kailey's vision, hearing and balance throughout her life.

"Genetic testing confirmed it," Erica says. "It was a life sentence, but it wasn't a death sentence."

A wheelchair rental

Because of her leg weakness, she was set for a custom wheelchair fitting – meaning she'd likely need a wheelchair for a year or longer. But as the weeks passed and she improved more, her physical therapist recommended a wheelchair rental instead.

Five months later, Kailey ran a 5K.

"It was a lot of really hard work," Kailey says. "My mom helped me keep going even when it was really hard. I feel really happy and proud."

Despite missing half of third grade, Kailey is back at school and doing well in her classes. She loves reading, coloring, volleyball and running track with her dad as her coach and biggest fan.

She has ongoing care with many specialists at Children's Health. Her family appreciates how her care team goes above and beyond — from different specialists having conferences about how to best meet all of Kailey's medical needs, to scheduling appointments in the same day so she misses less school.

This all started with an experience that made me feel like a helicopter parent and made Kailey feel like her pain wasn’t real. But now we’re here, at Children’s Health, with a quality of care that I’ve never seen before. Every patient is valued. All they see is patients and hearts, and families. We’ve never had anything but the best care.
Erica, patient parent

"This all started with an experience that made me feel like a helicopter parent and made Kailey feel like her pain wasn't real," Erica says. "But now we're here, at Children's Health, with a quality of care that I've never seen before. Every patient is valued. All they see is patients and hearts, and families. We've never had anything but the best care."

Learn more about our Neurosurgery Program

Ranked as one of the best neurosurgery programs in the country, Children's Health experts have access to the world's most advanced techniques and technology to help children and teens overcome pediatric neurological disorders. Learn more about how we care for a wide range of neurological conditions.

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patient story, treatment, neurosurgery, tumor, neurology

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