One Patient's 'Happy Endings'

April 28, 1995|By Suzanne Loudermilk | Suzanne Loudermilk,Sun Staff Writer

Matt Chrest of Abingdon was just a carefree 10-year-old last summer when a dangerous tumor invaded his mouth.

His only chance for survival was having his tongue removed in a 17-hour operation that took place in November. His family didn't know if he ever would be able to eat solid food or talk again.

But today, Matt is happily swallowing pureed McDonald's hamburgers and pizza. And most surprising, even to his doctors, he speaks clearly enough for strangers to understand him.

He's also become a celebrity of sorts as the boy with no tongue.

"We have happy endings," said his mother, Marie Chrest. "But it's been heck getting there."

The Harford County family's roller-coaster ride with fate began last summer when they discovered a golf-ball-sized growth on Matt's tongue. They soon learned they were dealing with a rare, tenacious tumor, called a hemangiotericytoma.

Only about 200 to 300 reported cases are in world medical literature, said Dr. John C. Price, a Fallston otolaryngologist (an ear, nose and throat specialist), and there is no known cause.

Matt was one of the youngest known victims.

His malady even had the dubious distinction of being named "tumor of the month" at Greater Baltimore Medical Center last summer. At that time, Dr. Price removed as much of the growth as he could without damaging Matt's tongue in a six-hour operation.

The tumor, however, quickly grew back, bigger than before.

The family was told that the only way to excise it was to remove the tongue. It was not a cancer, so it would not respond to chemotherapy or radiation.

Dr. Price referred the family to a surgeon in Philadelphia who not only removed the appendage, but performed a sophisticated reconstruction of a flap to allow Matt some swallowing ability and possible guttural sounds.

Five months later, the limited prognosis is difficult to comprehend as Matt skates in his neighborhood, plays with his hamster, Fu, and talks on the phone to friends.

His biggest disappointment was having to give up the trumpet. But in its place, the fifth-grade student is mastering the keyboard in the school band at William S. James Elementary.

What the future holds for him is unknown, though. "Hopefully, the flap will grow with him," his mother said.

The Chrests also have been told there is a risk of tumor recurrence.

"Optimistically, it won't grow back," Mrs. Chrest said. But Matt will need to have a magnetic resonance imaging test to check for problems every six months for the rest of his life.

"It's been isolating for him," Mrs. Chrest said. "You can't talk to another 10-year-old about MRIs. They don't understand. Most don't have to worry about dying."

But for now, Matt said he is happy his nasty tumor "is busy eating Philadelphia."

"He's very successful already," Dr. Price said. "He's surprised us quite a bit."

It is a quarter-million-dollar miracle in which Dr. Richard E. Hayden, an otorhinolaryngologist at the Hospital of the University of Pennsylvania, worked in cooperation with Children's Hospital of Philadelphia to fashion a flap from a muscle in Matt's leg to fill the void in his mouth after the tongue was removed.

"There's a strong piece of leg in there," Mrs. Chrest said. "There was no guarantee about speech. . . . He kept trying as soon as they said he could try."

"We didn't expect him to do as well as he did," said his father, Ken Chrest, as Matt sat next to him at their home on a recent evening. "You know kids. You can't tell them what they can't do."

But the procedure hasn't been without difficulties. Matt often experiences a burning sensation in his affected leg, has had to withstand the discomfort of tracheotomy tubes, and only last week had a feeding tube removed from his stomach.

Until February -- the first time since the operation that he could put food in his mouth -- the tube had been his lifeline. And he still faces complicated dental reconstruction to replace teeth lost in surgery.

The medical bills are piling up, tens of thousands of dollars above and beyond the insurance coverage. His parents are matter-of-fact about the looming debt. "You have no choice," said Mr. Chrest, a Giant Food stock clerk. Mrs. Chrest is a legal assistant.

It is the same attitude the couple adopted in facing Matt's illness. "You just do it. You can't run away from it. He couldn't run away. We couldn't either," Mr. Chrest said.

They also gained solace at the Ronald McDonald House in Philadelphia, where they stayed during Matt's hospitalization. "No matter how bad we felt, there was always somebody who had something worse," Mrs. Chrest said. "It was a place to go and put things into perspective. We still had hope. Others didn't, and they were coping."

The Chrests also worried about their older son, 14-year-old Brett, who was shuttled among relatives and friends during the ordeal. "Thank goodness, he has a good support group of friends," Mr. Chrest said.

And help often came in other surprising ways. A 55-year-old marine biologist in New Zealand, who had an operation similar to Matt's, has been corresponding with him.

Mrs. Chrest said the pen pal is giving her son invaluable advice: "He tells him that so much of what is spoken is worthless. Limit yourself to what needs to be said."

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