Taylor West was suffering from terrible headaches, but they came and went so fast neither she nor her parents were too worried at first. But as the headaches got worse, doctors became worried. A CT scan revealed a large tumor in Taylor’s brain, and less than 10 days later she was undergoing surgery at Boston Children’s Hospital and waiting to find out if the tumor was cancerous.
When Taylor West of Tecumseh, Oklahoma, started complaining of headaches, her mother Lori’s first thought was that she was trying to get out of school: The headaches were worst early in the morning, but by noon Taylor would be up and running around.
“People thought the headaches were just because of stress, but I knew they weren’t,” says Taylor, age 10. “It felt kind of like an electric shock.”
When Taylor began getting sick to her stomach and throwing up, Lori thought perhaps she had a flu bug that was going around. But as weeks and then months went by, she became concerned, and so did the doctors. A neurologist sent Taylor for a head CT scan.
“That evening we got a call saying, ‘get her to the hospital tonight,’” Lori said.
The scan showed a tumor and Taylor’s doctors thought it was malignant. That was February 15 of this year. “When you get news like this, you don’t sleep, you don’t eat,” says Lori. “But you research.”
Lori’s research led her to Boston Children’s Hospital. Taylor did research of her own: Lori found her watching YouTube videos of brain surgery.
By February 21, Lori and Taylor were in Boston. They met with Alan Cohen, MD, Boston Children’s new chief of Neurosurgery and an expert in pediatric brain tumor surgery. Cohen showed the Wests an MRI image of Taylor’s tumor. “It frightened me; it was so much bigger than what they had told us before,” Lori says.
The tumor engulfed most of Taylor’s cerebellum—the bottom portion of the brain that has an important role in controlling movement, balance, language and other neurologic functions. And it did appear malignant to Cohen, but he couldn’t tell for sure until he operated.
“I was nervous and scared,” Taylor says. “I was really, really worried that [Cohen] would mess up.” Lori was at a loss to comfort her: That was her deepest fear too.
Cohen tried to defuse their anxiety. He shared as much information as he could, including Taylor’s brain images and his experience with tumors like hers. “He at first acted serious, but then he would say something funny and make me feel a lot better,” Taylor recounts.
On February 24—not even a week and a half after the ordeal had begun—Taylor had her brain surgery. Cohen removed the tumor in Boston Children’s “MR/OR”—an operating room with a built-in magnetic resonance scanner that allows surgeons to check their progress in real time. When Cohen thought he had removed the tumor, Taylor was slid into the scanner mid-operation to make sure.
A final residual bit of tumor was indeed found and removed, and the follow-up MR scan confirmed that the tumor was completely excised. Lori and Taylor were so relieved that the pathology results, which came later, were almost an afterthought. They came back completely benign: a pilocytic astrocytoma; Taylor didn’t have cancer. Since the entire tumor was removed, Cohen considers her to be cured.
When he visited Taylor’s hospital room, Cohen gave Taylor—not Lori—one of his business cards and told her she could call him anytime. “A day didn’t go by when he didn’t come in to see us at least once,” says Lori.
A week after the surgery, Taylor was discharged from Boston Children’s and looking forward to going home. She had a stiff neck that Cohen assured her would go away. The steroids she was taking to reduce swelling in her brain have made her a bit moody and have given her a big appetite, but Lori thinks it’s a small price to pay.
“Six days ago she was in the ICU,” she says. “Now, she’s bothering me for Dunkin’ Donuts and enchilada soup at Chili’s.”
Taylor will continue to have follow-up scans in Oklahoma, which will be sent to Cohen—but with the headaches and tumor gone, her prognosis is excellent.
“This was a happy story for all of us,” says Cohen. “The tumor was benign and has been totally removed. Now that this chapter in Taylor’s life is behind her, she can concentrate on going back to horseback riding and planning for a bright future.”