Stories of Hope
Young Man Faces Down Rare Brain Cancer
Article date: April 2, 2002
I just knew I was going to be okay
Survivor Credits Faith, Teamwork
Discovering at age 18 that he had a malignant brain tumor was "pretty crazy, pretty scary," said Tommy Phillips, now a "pretty normal" Upland, Calif., 20-year old.
Cancer postponed a couple of years of his life, but now things are back on track. He's returned to college, and is studying computer programming. He's surfing.
"Just started that again," he said, the excitement evident in his voice. His weight, once down to 90 pounds, is now at his normal 150.
"The nurse said she'd never seen anybody so sick," he said. He's got his hair back, his life back, and now, his health back.
In July of 2000, Phillips was spending time with his family at Lake Mead, a recreation area between Arizona and Nevada. The blurred vision and headaches he'd been getting since that spring were getting worse. But he didn't say much about it, until that day.
"He was complaining of headaches and he wasn't water-skiing or wake-boarding," said his mother, Sandy. "He just wanted to sleep."
His parents realized something was wrong. Although the sun was bright, his pupils didn't respond. After they got home, they took him to a local hospital's emergency room.
"I was in so much pain, I just slept all the time," Phillips said. After an emergency MRI, he saw his mother and sister crying. The MRI showed a tumor on the pineal gland centered on the underside of the brain, not far from the pituitary gland.
Tumor Misleads Doctors for a Year
The tumor was causing fluid to build up, creating pressure inside his skull that led to the headaches and blurred vision. The tumor also affected Phillips' pituitary gland. For about a year, he said, doctors thought he was diabetic. But his excessive thirst and frequent urination were tumor-related, not diabetes.
The MRI and diagnosis came late on a Friday evening, just a few days after the family returned from the lake. Sandy said the family was shocked by the news.
"It was hard to deal with, but it came on very suddenly so we didn't have a long time to dwell on it," she said.
Phillips stayed in the hospital and surgeons inserted a temporary shunt to drain the fluid while they decided how to treat him. During the weekend, several relatives urged Tommy's parents to contact a neurosurgeon.
"I just knew I was going to be okay," he said. "All these crazy things happened, like finding Dr. Black."
At Cedars-Sinai Medical Center in Los Angeles, Keith L. Black, MD, is director of the Maxine Dunitz Neurosurgical Institute. He holds the Ruth and Lawrence Harvey Chair in Neuroscience at the University of California, Irvine.
"Four different people who aren't connected at all told my parents I had to see Dr. Black," Phillips said.
"My niece actually came up with the phone number," recalled Sandy. "We did call and it was almost like a miracle that Dr. Black himself answered the phone. It was 4 o'clock then and he asked if my husband could be there before 5 o'clock and my husband said, 'Sure.' And he made it."
"They went over the films and Dr. Black said he could help him and asked when we could have him there," said Sandy.
As soon as Phillips arrived at Cedars-Sinai, the medical team started performing tests and mapping his brain in preparation for surgery. Tommy was "scared to death," said Sandy.
A Worst-case Prognosis Turns Optimistic
The first doctor he'd seen (at a local hospital)"pretty much told me I didn't have a chance," Phillips said. "But everybody (at Cedars-Sinai) kept telling me, 'We're going to take care of you. You're going to be fine,'" Phillips said.
Sandy said the doctors were optimistic, but made no promises.
Black headed the surgical team that removed the tumor on July 24. Phillips had a dysgerminoma, a brain tumor that is rare, malignant, and aggressive. Black told Phillips it was right in the center of his brain.
While in the hospital, Phillips stayed in the pediatric cancer ward. He was the 'big kid on the block,' he said.
He struck up a friendship with the young woman who ran the ward and with some of the children. "When I walk through the hospital I always see somebody that knows me," he said.
Phillips was blind for a month at one time during his treatment. "That was miserable," he said. But his faith never wavered. And his vision returned.
"With the chemo and the radiation, for a year and a half we drove pretty much every day from where we live — which is about an hour and fifteen minute drive — just to go to Cedars-Sinai," Sandy said. "That's the confidence we had in the whole team. In my opinion, they're miracle workers."
Now, Phillips looks forward to a 45-minute drive to the beach, either Newport or Huntington. And he just got a new wetsuit. Surf's up!