Letting nothing hold him down

BILLERICA -- Slices of John Tilley's brain crowd the MRI sheets. He holds them up to the light, twisting them around to best illuminate the jumble of shaded pieces and parts that make up the inside of his head. Flipping one over, he spots it.

There. On the left side, just behind his eye. He points.

That's where, more than 11 years ago, the tumor began to grow.

Nothing much is visible on the MRI sheet, at least not to the untrained eye. It looks no different from the rest of the amorphous shapes that make up the images of his brain.

Then Tilley moves his shaggy hair back, lifting and parting it, exposing a question mark of a scar. Now it's obvious.

Just behind that spot, around the optic nerve, the inch-thick tumor swelled, putting enough pressure on his brain to cause a coma.

Doctors expected him to survive with the mental capacity of a fourth-grader. Eleven years later the senior captain of Billerica's wrestling team applied to four colleges, including MIT and Boston College.

Struggling with school and social skills and medicine-induced weight gain, Tilley has felt the ripples of the tumor for more than a decade. A sense of normalcy returned about two years ago, with Tilley slimming down because of wrestling and fully adjusting to the classroom.

"I have this tumor. It's holding me back and I'm just going to get right back up," Tilley said. "Even though the tumor died when they pulled it out, it still has been pretty much alive in the sense that it's been holding me down all those years. But I just kept fighting against it."

Pain had seared through the skull of the 7-year-old, as he played tag at recess. On a scale of one to 10, Tilley told his mother the headache was a 99. He passed out, thrust into a coma by the blood spilling into his brain.

Pat Tilley, John's mother, remembers getting the phone call. She remembers snow squalls on the February day prevented her son from being airlifted directly to Children's Hospital. She remembers the tractor-trailer that jack-knifed on I-93 and slowed their progress to Boston. She remembers the diagnosis.

"It's fairly benign," Pat said. "And I asked the doctor if that meant it was also fairly cancerous. He said, 'Depends if you're an optimist or a pessimist.' "

Identified as having a rare form of a common childhood brain tumor, pleomorphic xanthoastrocytoma, Tilley was in surgery four days later at Children's Hospital. Dr. Nancy Tarbell, head of pediatric radiation oncology at Massachusetts General Hospital, said about 1,500 pediatric brain tumors are diagnosed in the United States each year. Less than five percent -- maybe as little as one percent -- are labeled pleomorphic xanthoastrocytomas.

Blindness, brain damage, and malignancy were potential complications, though generally, Tarbell said, the tumor is a low-grade, well-behaving form. Skating by the worst of the possibilities, the family learned that not all of the tumor could be removed. A small portion had to stay.

MRIs have dogged Tilley since the surgery, monitoring the piece still embedded. He's used to them, and has brought in the sheets for show-and-tell three years straight. He needs them to make sure the tumor doesn't return. At first it was one every three months, then six. He's up to four years between appointments now. The tumor hasn't grown back.

That doesn't mean nothing has changed. Before, Tilley had more energy than he could handle. Watching movies was an interactive experience, as he acted out scenes and images -- trying to fly during "Peter Pan." Enervated and sedated, Tilley emerged from the surgery eager to just sit and watch. No more flying.

Teachers urged Pat to place her son in special-education classes, fearing he would never regain the knowledge he lost along with the tumor, but she resisted. Though he had forgotten how to tie his shoes, he remembered how to read.

"I had trouble taking in something all at once," Tilley said. "You need to find a way to get it through my head. If you say it one way, I have no idea what you're talking about. Say it another way, and I'm like, 'Oh, all right.' Pretty much you needed to find the way it clicked in my head.

"That's what a lot of the brain tumor was. It pretty much cut off some of the circuits connecting in my brain and you had to find detours to get around."

Eleven years later, Pat feels vindicated. Advanced Placement classes line Tilley's schedule. He wants to be an English major and a freelance writer. He relearned his first seven years, and more.

Sports have helped -- Pat initially placed him in a few to address the passivity -- though he knows he'll mostly leave that behind when he graduates from high school. He participated in taekwondo and karate, lacrosse and wrestling, basketball and baseball -- everything except football and hockey, pretty much. Those weren't allowed -- not with the crack in his skull.

With a wrestling record heavily weighted toward the loss column this season -- he competes in the 171-pound weight class, a victory in itself after being relegated to heavyweight freshman year -- Tilley has taken up partial coaching duties. During practice he's happy to teach a less-experienced 103-pounder a couple of moves.

"He sometimes might not have the athletic ability that some of the high school wrestlers do," first-year Billerica wrestling coach Bob Belanger said. "But if it comes to him being put on his back, he'll fight until the end to save the team some points. He'll fight off his back. He'll still save the team one point. That's what we've talked about all year and he continues every day to constantly do that."

Fighting. It's what he's been doing for a decade. It should come easily by now.

But sometimes, increasingly over the last two years, Tilley doesn't even remember the tumor. It's a long way from the years after the surgery, filled as they were with concerns about the tumor returning and worse.

"Most of it was fear of dying. Sometimes he would have panic attacks," Pat said. "Once he started feeling better and lost weight and stopped with the headaches, a lot of things kind of fell into place. The more time that went by, the less he worried about dying. I said, 'You're getting so worried about dying, you're not living.' "

Tilley seems to have listened. It's been 11 years. And an eternity.

"After 12 days in the hospital, six months spent mostly asleep, and years of frustration over my brain damage and obesity, I finally recovered," Tilley wrote in his college essay. "The perseverance paid off. Time is still my enemy, but I'm alive as ever."