A medical-equipment salesman and a neurosurgeon team up to bring a rare cancer-fighting device to Providence to help a 6-year-old boy with a brain tumor.

01:32 AM EDT on Saturday, April 10, 2004

BY FELICE J. FREYER
Journal Medical Writer

When Chuck Vecoli got a phone call from Dr. John Duncan the other night, he didn't know that he would be sent on a three-state odyssey, in pursuit of a silver box that could save the life of a 6-year-old boy.

All he knew was that Duncan, the chief of neurosurgery at Rhode Island Hospital, is a client, a friend and someone Vecoli admires tremendously as a surgeon.

So he was happy to take the call, and didn't flinch when Duncan said, "This is impossible, but . . ."

Duncan wanted Vecoli, who sells high-tech medical equipment, to somehow bring to Rhode Island an experimental radiation device called the Intrabeam. There are only six of these silver boxes in the United States. Duncan believed it was 6-year-old Matthew Bentley's best hope of beating his brain tumor.

Journal photo / Frieda Squires Cindy Bentley holds her 6-year-old son, Matthew, in the intensive care unit of Hasbro Children's Hospital on Thursday. Matthew underwent a procedure with an experimental radiation device called the Intrabeam to remove a brain tumor.

Vecoli knew Matthew Bentley. Because he had supplied the equipment, Vecoli attended the surgery on a previous brain tumor of Matthew's, in January 2002 when the boy was 4. That was the first time the Intrabeam had ever been tried on a child.

The silver box worked. The tumor on the right side of Matthew's brain never returned. Now, two years later, an MRI had detected a new tumor in another part of his brain.

But the Intrabeam was no longer at the hospital. It had been there only temporarily, under a rental agreement as part of an experiment.

So the Thursday before last, Duncan called Vecoli, who does consulting for Carl Zeiss, the German company that makes Intrabeam, in addition to his regular job as marketing director for Radionics, a medical-equipment maker in Burlington, Mass.

Vecoli called Zeiss. They said he could borrow an Intrabeam from the company's headquarters near White Plains, N.Y. There wasn't time to ship it, though. Vecoli would have to go get it himself, the following Monday.

His boss gave him time off from work. He rented a 24-foot Ryder truck with a lift gate. Although the Intrabeam is small enough to hold in two hands, it weighs several pounds and requires a sturdy giraffe-like stand to hold it steady -- too big for a car. In the Ryder truck, Vecoli left for New York at 6:30 a.m. on Monday.

But a new obstacle quickly arose.

The Intrabeam in White Plains was dangling from a flimsy stand that was inadequate for surgery. It couldn't be used like that. Heading back in his empty truck, Vecoli called Duncan from the road with the bad news. But he suggested that Duncan call his colleague in Boston, Dr. G. Rees Cosgrove, to ask if they could borrow the one at Massachusetts General Hospital.

Duncan said he'd give it a try.

THE BENTLEYS live in Coventry, but their post office is in the neighboring town of Scituate, in the village called Hope. Michael Bentley likes that his family's mailing address is Hope.

His son, Matthew, has been fighting cancer for most of his life. (Matthew's brothers, his fraternal twin Andrew, and 5-year-old Michael, are healthy.) The cancer first appeared when he was only 3 and became mysteriously short of breath. Doctors diagnosed an extremely rare form of childhood lung cancer, called pleuropulmonary blastoma. The tumor had grown so quickly that one of Matthew's lungs had to be removed.

A year after the lung surgery, the cancer recurred -- in the brain. This, too, is very rare. Most brain tumors in children originate in the brain, but Matthew's had spread from a cancer that started elsewhere.

In October 2001, Duncun extracted a tumor the size of lemon from Matthew's right frontal lobe. But within three months it returned -- already as big as a golfball. Duncan didn't have a playbook for this one. He was dealing with a virtually unique situation.

But he happened to be amid an experiment using the Intrabeam to treat brain cancer in children, and he used it on Matthew.

The silver box is the size of a coffee can; attached to it is a slender cone with a ball at the tip, like a clown's hat with a pom-pom. After the surgeon removes the tumor, he places the machine's bulbous tip inside the cavity where the tumor was.

The ball emits an expanding sphere of radiation, killing any microscopic cancer cells in the vicinity. That way, the cancer is treated from the inside, so the x-rays don't have to pierce healthy brain tissue to reach it. That's especially important for young children, whose developing brains are easily damaged by radiation.

Duncan eventually used the Intrabeam on four children. Three of them had advanced malignancies; there had been little hope for them, and they all died.

Matthew Bentley was the success story. He went two years cancer-free.

But then, late last month, Matthew developed a new tumor, in a different part of the brain. Duncan admitted him to Hasbro Children's Hospital, and gave him drugs to try to stop the swelling of his brain.

If he couldn't get the Intrabeam, Duncan would remove the tumor, and give Matthew radiation treatment afterward. That would be more dangerous, more difficult for the boy, and probably less effective. But the tumor had to come out soon.

AT MIDDAY ON Monday, Duncan called Vecoli in his Ryder truck. He told him that Cosgrove, the neurosurgeon at Massachusetts General, had agreed to lend the stand for the Intrabeam, but he couldn't release the device itself, because of all the laws and regulations surrounding x-ray machines.

That's OK, Vecoli replied. He can still get the one in New York. Just a few more hours of driving. He went to Boston, arriving around 5:30 p.m., loaded the stand onto the truck, and headed back to New York for the second time that day. After an overnight in Danbury, he collected the Intrabeam -- seven cartons containing the silver box and the electronics to power it.

Around 1 p.m. on Tuesday, Vecoli delivered the equipment to Rhode Island Hospital. The hospital's medical physicists scrambled to get the equipment registered with the state, inspected and calibrated.

In the operating room Wednesday morning, Duncan lifted off a cookie-sized piece of skull behind Matthew Bentley's left ear. The tumor was just below the surface and extended deep into the part of the brain involved with right-left orientation, writing and numbers.

Duncan used a device that broke up the tumor with ultrasound waves and then sucked it out. He placed a 2 1/2-centimeter ball on the tip of the Intrabeam, inserted the device into the tumor's empty cavity, and irradiated the area for 24 minutes.

Matthew woke up a few hours later, in his mother's arms. He recognized her, knew where he was, even tried to convince her to take the intravenous lines out of his arms. Duncan told reporters at a news conference Thursday that Matthew would be back in his first-grade classroom within two weeks.

After his previous tumor was removed, Cindy Bentley, 40, was sure that Matthew was cured. But Michael, 49, worried about all the uncertainties surrounding cancer.

Now, they seem to have reversed their attitudes. "I'm scared," Cindy said Thursday afternoon, as she watched Matthew sleep in his hospital bed. "I don't like to look ahead. I don't want to look ahead. It might come back. How many times can you cut open a 6-year-old kid's head?"

Michael reached over to touch her leg. "You need to believe that it's over for him," he said. "Otherwise you can't continue."

AS A PEDIATRIC neurosurgeon, John Duncan's job is to reach into children's tender brains and perform some kind of magic that most people can't begin to fathom. Each time he succeeds, he surely has an exciting story to tell. So why call a news conference for Matthew Bentley?

"It's not the surgery," Duncan said.

There are so many obstacles in health care today. Insurance companies won't pay for the Intrabeam, because they consider it experimental. The hospital can't buy a $400,000 machine that's used infreqently and isn't reimbursed. Wherever you go, you meet up with limits and roadblocks.

"Our system is strapped," Duncan said. "It takes people to get by those obstacles. . . . This is where people just came together. They did it because they cared about the kid."

At his Cumberland home yesterday afternoon, Vecoli was asked why he drove all over creation to get the silver box for Matthew. Vecoli, 46, is a thickly built man with close-cropped gray hair and a certain brightness in the eyes -- dark eyes that now register a trace of surprise at this question. A good salesman believes in his product, and Vecoli wants to show the world that Intrabeam works.

But also, he got a call from John Duncan, and a child was sick. "When John tells me this is the only thing that's going to work," Vecoli said, "then it's got to be done.

"To me," he added, "this is not a big deal."