Faith Academy student inspiration to all as she battles deadly disease

DANIEL CLIFTON • PICAYUNE EDITOR

MARBLE FALLS — Just after finishing her first Frappuccino of her summer break, Katelyn Norton stands up and steps away from the table outside the Marble Falls Starbucks. Before she can get far, Mark Sommer comes around the table and gives her a big hug.

“You’re such an inspiration,” he tells her. “To so many people, you’re just an inspiration.”

Norton, all 16 years of her, smiles. It’s an awkward smile at first because she’s not sure about being an inspiration. On the surface, she’s just a 16-year-old junior at Faith Academy.

Yet to those who know her, Katelyn embodies something a bit more complex. To understand that, you have to step back three years.

Her mother, Debbie Norton, noticed allergies had been bothering her then-Marble Falls Middle School daughter. A previous trip to the doctor’s office pretty much left them hanging on that prognosis. But one day, Katelyn noted her ear was bothering her. So they mentioned it during a visit to the doctor’s office Nov. 11, 2011. A check of her ear left the doctor a bit stymied. Her ear bones were moving, but her nerves weren’t.

“He said she needed an MRI,” Debbie recalled. And not, “Let’s schedule one in the near future,” but right now. After getting the MRI the same day, the mother and daughter waited as a specialist, who was at home, reviewed the results.

After studying the MRI, the physician told Debbie to immediately get Katelyn to Dell Children’s Medical Center of Central Texas. When Debbie asked if they could stop by their house and pick up clothes, the medical staff said if she did that they would instead call an ambulance and have Katelyn transported.

At Dell, a medical team met the 13-year-old girl, expecting a teen wreathing in uncontrollable seizures. But upon seeing Katelyn walking on her own and in control of her faculties, doctors slowed down — just a bit. What they learned was Katelyn suffered from a nerve sheath tumor that had grown to the size of a baseball in her skull. Surgery was the only option.

They scheduled the surgery for Friday morning. Before that, however, physicians pulled Katelyn’s parents into a small room and laid it all on the table.

“They told us we should begin planning for our daughter’s funeral,” Debbie said. “We thought we had about 64 hours left with her.”

Katelyn’s dad, Mike, however, had some advice for the doctors.

“You don’t know my daughter,” he told them. “She’s a fighter.”

The surgery was challenging to say the least. Physicians were working with a nerve about the size of a piece of hair. And to make it worse, it was wrapped in a tangle of other nerves that controlled numerous functions. During the two-hour surgery, surgeons removed the tumor, but they nicked another nerve that controlled Katelyn’s ability to swallow.

The challenges ahead were many. Doctors advised that because of the nicked nerve, she probably wouldn’t ever be able to swallow again, which meant she wouldn’t be able to eat and would require a feeding tube. But a physical therapist asked doctors to give Katelyn a chance. And over a period of more than a month, Katelyn taught herself to swallow and eat again. It wasn’t an easy accomplishment with frustration plaguing her along the way.

The family pledged not to eat Thanksgiving dinner until Katelyn could enjoy it with them. It was mid-December before they sat down to the dinner.

Katelyn was one of maybe three teenagers who had ever contracted a nerve sheath tumor, where the cells just start replicating uncontrollably. Debbie explained that the disease typically targets people 60 and older. And because stem cells and nerve cells aren’t dividing as much at that age, it’s a slow-growing tumor and usually doesn’t require surgery.

In Katelyn, whose stem cells and nerve cells were replicating and growing, it became a fast-growing tumor.

The follow-up included daily trips to Dell for seven months

Katelyn’s sister, Emily, who is 13 now, admitted it was tough watching her older sister endure the surgery, follow-ups and recovery. But she saw in Katelyn an indomitable courage and will power — one she looks to for a bit of strength when things aren’t going her way.

“It was kind of hard to see her go through all of this, but watching her, I learned that you should always keep going and never give up,” Emily added.

After repeated follow-ups, doctors believed they had removed the tumor. The family, they thought, was in the clear.

During a routine checkup last summer, physicians discovered the tumor was back.

“It felt like the rug was pulled out from under us,” Debbie said.

While she was researching this particular type of tumor, Debbie learned of a surgeon in Iowa who is considered one of the most knowledgeable about the nerve sheath variety. So the family opted to take Katelyn there for the surgery. It turned out to be multiple surgeries because the tumor resurfaced a third time, leading to three surgeries last summer.

While her parents kept the initial dire prediction from Katelyn for several months, the teenager knew the potential dangers that awaited this time. Still, her manner and reaction reflected her experience.

“I’ve been through it already,” Katelyn said about her second round with the disease. “I’ve got this.”

And she did. The three surgeries knocked out the tumors, but she still goes in for routine checkups to make sure. Katelyn still hesitated at the thought of being anyone’s inspiration. But as she said that, her mother piped in.

“I think you are,” she said. “I know several people at church who are in their 50s and 60s who say you inspire them because they are in their 60s or so, and they’ve never been through something like you have. And they see the way you’ve handled it, and they are just are amazed.”

Katelyn smiled a bit at the thought, but it’s clear she just enjoys being a teenager. She’s not about to let some disease, no matter how terrible or how much it impacts her life, define her now or in the future.

“I’ve got bigger and better things to do,” Katelyn added.

And what does that mean for her immediate future, as in this summer?

“Hopefully catching up on all the TV shows, eating a lot of food,” she said. Then with a smile, she added, “You know, living the dream.”

Friends of the Nortons have set up a webpage to help the family with medical costs. Go to www.youcaring.com and search for “Katelyn Norton” for more information.

daniel@thepicayune.com