4-year-old's battle with cancer ends

‘A little old soul’
Jun. 13, 2013 @ 08:33 AM

If there was any bright spot for 4-year-old Kylee Walker in a day filled with chemotherapy treatments, pain and nausea, it was seeing “Tug” the robotic medicine cabinet rolling down the hallway at Levine Children’s Hospital.

“She would listen for the ‘toot-toot’ of its horn and demand to be taken to the door,” Misty Vess said of her daughter.

Kylee, the source of strength in a family shaken to the core by her cancer, died Tuesday morning after fighting a form of childhood cancer known as neuroblastoma.

“I think she knew she was going (to die),” Vess said. “She, in her own way, prepared us.”

In sickness and in health, Kylee kept a smile on her face. The community learned of Kylee through fundraisers, the Wig Bank and on Facebook. Even in the throes of her illness, she tried to make those around her strong.

“I was feeding her macaroni and cheese while she was sitting on the toilet (in her hospital room), and she grabbed my face, pulled it close to hers, and said, ‘God is with you and God is with me, do not be afraid,’” Vess said through tears. “She fought that fight for us the best she could. She was a little old soul.”

Just 13 months ago, Kylee was a healthy, vibrant little girl with long, blonde hair. One day as Vess and Kylee played, Kylee screamed in pain. Vess also noticed Kylee’s right arm was weak, and she limped in her walk. Kylee was also complaining of pain in her stomach area.

The next day at Levine Children’s Hospital in Charlotte, Vess and her family heard the grim news: Kylee had advanced cancer in her arm and leg, and a cantalope-sized tumor in her belly.

Neuroblastoma is one of the most common cancers in children, with about 650 cases per year in the U.S. Nearly half of neuroblastoma cases occur in children younger than 2. It most frequently originates in one of the adrenal glands.

Kylee underwent a regimen of chemotherapy every 21 days, for a total of five rounds. That treatment cleared up the cancer in her arm and leg, and it reduced the tumor in her belly to the size of a baseball.

A second round of chemotherapy was administered, only stronger. On Nov. 13, Kylee underwent a stem cell transplant to replace healthy cells killed off by the chemo, and to kill any neuroblastoma cells still present in her body. Doctors again operated on Kylee, but still found evidence of neuroblastoma in her body.

“All they could do really was just clean up the area as best they could,” Vess said.

Vess took Kylee to Walt Disney World right after her birthday, which was March 23, for her Make A Wish Foundation goal of seeing the Disney character Rapunzel. They were quickly summoned home, however, for more bad news. On Easter Sunday, just eight days after Kylee turned 4, doctors told Vess one of the seven scans that had been taken after her last round of treatments showed the neuroblastoma had returned, this time “with a vengeance.”

More outpatient chemotherapy was scheduled, but Kylee began to feel worse. Kylee returned to Levine for the final time.

“We knew she was in bad shape,” Vess said. “She didn’t want to take the medicine any more, and just wanted to be held.”

Doctors were still optimistic the tumor could be shrunk. But it began to hemorrhage, and her organs began to shut down.

Last Friday, Vess asked doctors to stop treatments and just make her comfortable. It was hoped she could return home under hospice care, but doctors determined she wouldn’t survive the trip.

On Saturday, Vess talked to Kylee about her illness.

“I told her how brave she was, about how many lives she touched, and that I wanted her to rest in peace,” Vess said.

Kylee slept most of Monday, the morphine doing its job of keeping the pain at bay. At one point, with the family in the room, she woke up, looked at her mother and said loud enough for all to hear, “I’m sorry, y’all,” the last words she would utter.

She died peacefully at 7:41 a.m. Tuesday.