Cover

THE LEGACY OF HOPE

Matthew Bendoritis had the same osteosarcoma that killed Terry Fox. But thanks to medical advances, writes DANYLO HAWALESHKA, young Matt has better odds.

DANYLO HAWALESHKA April 4 2005
Cover

THE LEGACY OF HOPE

Matthew Bendoritis had the same osteosarcoma that killed Terry Fox. But thanks to medical advances, writes DANYLO HAWALESHKA, young Matt has better odds.

DANYLO HAWALESHKA April 4 2005

THE LEGACY OF HOPE

Cover

Matthew Bendoritis had the same osteosarcoma that killed Terry Fox. But thanks to medical advances, writes DANYLO HAWALESHKA, young Matt has better odds.

DANYLO HAWALESHKA

IT STARTED WITH A SUDDEN BOLT, shooting down his right leg like an electric shock. The year was 1997— a warm summer evening—and nine-year-old Matthew Bendoritis was sitting at the kitchen table, eating supper in the roomy bungalow his grandfather built on the family farm near Thorsby, Alta., 50 km southwest of Edmonton. His parents, Mark and Margita, tried rubbing their son’s aching leg, thinking he might just be having growing pains. But a few days later, Matt’s hockey coach noticed the boy limping and mentioned it to his folks.

They booked an appointment with their family physician. Matt might have an infection, the doctor told them—but there was a chance it could be cancer.

Skip ahead eight years. After a day of chores, Mark Bendoritis sits back, comfortable in a pair of sweatpants and a sky-blue T-shirt, relaxing at the same kitchen table where the ordeal began. A farmer of Lithuanian and Dutch extraction, Bendoritis raises 85 head of cattle and plants cereal and oil seeds on the 1,250 acres they own and rent. That’s the family’s regular life, the one in which he and Margita chose to bring up their three kids. But Bendoritis, 43, recalls the moment everything changed irrevocably for all of them. Even before performing a biopsy, a surgeon in Edmonton gave them the dreaded diagnosis: their oldest son had malignant bone cancer.

“I’ve never been so close to fainting,” Bendoritis says now. “It was like having boiling water poured on your heart.” Trying to compose himself, he shields his eyes with his palms and doubles over into his lap, the tears flowing. Margita, 42, drops what she’s doing and comes over to console him with a gentle hug. There’s been so much pain, and yet they’ll be the first ones to tell you they have so many reasons to be thankful.

Matt, who turns 17 in April, was afflicted with the same osteosarcoma that killed Terry Fox in 1981. Like Fox, Matt suffered through an amputation of his right leg, although in his case an ingenious but oddly disfiguring surgical procedure saved a good part of the limb. Three times, the bone cancer has come back, and each time Matt’s fought it off. In total, he’s endured four major operations and two full years of exhausting chemotherapy that, incidentally, also damaged nerves in his ears—he wears two hearing aids. But, as perhaps only a teenager could, Matt shrugs off his siege with cancer as no big deal. “It’s like getting a cold, just a little more serious,” he says. “It’ll pass.”

OSTEOSARCOMA typically strikes children and young adults. No one knows why, but scientists think it is somehow connected to the rapidly dividing cells associated with the body’s growth spurts. Middle-aged adults, though less frequently, can also contract the disease, sometimes referred to as osteogenic sarcoma. Overall, bone cancer remains rare— about 300 people are diagnosed each year in Canada. Because of its disproportionate impact on the young, Dr. Benjamin Alman,

head of orthopaedic surgery at Toronto’s Hospital for Sick Children, says osteosarcoma “has a societal impact that’s actually much greater than the numbers affected would lead you to believe.”

In the mid-1980s, after Fox’s death, clinical studies began showing that chemotherapy, when coupled with surgical removal of the tumour, greatly increased the survival of patients with bone cancer. Before that, chemo wasn’t considered helpful. “Survival rates for people with an isolated tumour have gone from way under 30 per cent,” says Alman, “to way above 70 per cent in the past 20 years.” Fox’s Marathon of Hope, which began in St. John’s, Nfld., 25 years ago, is one of the reasons for improved survival in many cancers. Terry Fox runs have raised more than $360 million for research in 50 countries around the world. According to the Canadian Cancer Society, the money has led to several breakthroughs, including a new way to treat eye cancer in many children that eliminates harmful radiation; development of digitized mammography, with sharper images for better tumour detection; and promising work with stem cells that holds out the hope that one day leukemia patients

Cover I PHOTOGRAPHY BY SANDY NICHOLSON

may no Ionger have to wait for a compatible donor. Beyond money, Fox—determined, indefatigable—continues to inspire kids like Matt Bendoritis. “Without Terry,” Matt says matter-of-factly, “Fd probably be dead. So would a lot of other people.”

SOME OF MATT’S recollections from that time are lost to the fog of powerful antinausea drugs. “From what I can remember,” he says drolly, “I didn’t enjoy it.” The tumour was on Matt’s right thigh bone. Fie had read how surgeons in the U.S. had bungled a similar operation by amputating the patient’s healthy leg. No way was that going to happen to Matt, so he used a black marker to scrawl, “Wrong Leg” on his left thigh. On the right he wrote, “Bye you stupid cancer.” Matt’s surgeon used an innovative technique known generically as a hip rotationplasty, first described by Dr. Winfried Winkelmann in West Germany in 1986. It is used in young children, in part because the altered limb will grow with the child. In Matt’s case, surgeons removed the cancerous thigh bone, from his hip to just above his knee. They then took his amputated lower leg and rotated it 180 degrees so the

foot pointed backwards, and screwed the 10-cm stem of the femur to his pelvis. Matt’s knee now faces backwards and is up by his groin. (In this forced configuration, Matt sits on his kneecap, which requires a cushion for hard surfaces.) His calf is now

BEFORE his surgery,

Matt scrawled ‘Wrong Leg’ on his left thigh. On the right he wrote, ‘Bye you stupid cancer.’

his thigh; the ankle serves as the knee.

Aesthetically, the Winkelmann procedure leaves a lot to be desired, but more importantly, it’s a remarkable repurposing of the anatomy. Patients typically remain physically active and expend much less energy hefting their prosthesis than someone who’s lost an entire leg. Matt has a standard titanium and carbon-fibre prosthesis, at the top of which is a cup molded

to his foot. He slides it on like a slipper, then laces up a leather girdle around his thigh for support. His short limb doesn’t have the full range of motion the original had, but he’s able to flex it back and forth. The ankle flexes, too. Nerve damage was minimal. Matt experiences only a bit of numbness on the outside of his shortened leg. He walks unaided, but with a visible limp, and run-hops like Fox.

BACK IN HER KITCHEN, Margita Bendoritis peels a potato the size of a softball. She runs a small catering business on the side, but first has to feed the family. She picks up the thread of Matthew’s story in August 1998, when his chemo ended. Things went well enough for a bit, but then in February of the next year, the cancer recurred in his chest. Surgeons removed the speck of a tumour along with part of his right lung. A month later, a checkup revealed another spot on the left lung, this time the size of a grain of sand. It was so small, the family had to wait five months to allow the cancer to grow large enough for the surgeon to see and remove it all. About a week after the surgery, Matt was

back in class for the start of the school year. “He’s a fighter,” says Margita.

In June 2000, tests showed the bone cancer had come back yet again, this time in three spots: Matt’s collar bone, a lower rib and, strangely for bone cancer, in the muscle of his short leg. In August of that year, surgeons removed a section of collar bone, part of his sternum and an upper rib.

They also took out a lower rib, and one of three muscles in the calf that was now his thigh. The doctors gave him less than a 10-per-cent chance of surviving. “They recommended that we enjoy what quality of life Matthew had left,” says Margita.

The doctors were reluctant to treat him with chemo again. Matt had not weathered the chemical storm well the first time, dropping from 75 lb to just 50. Still, he wasn’t giving up, and a month after the operation, he started treatment. “They really didn’t think he’d see his 13th birthday,” says Margita, glancing out the kitchen window as her youngest child zips by on a four-wheeled all-terrain vehicle. Concerned, Margita adds, “And Joey’s not going to see his 13th if he drives without a helmet.” She strides to the window, flings it open and yells: “Joey! You don’t stunt like that without a helmet on!” A short time later, Joey saunters in with a smug grin. “It wasn’t a stunt,” he protests. “It was a fast turn.” Margita shoots him a look that Joey has the good sense not to challenge. Instead, he sits down to eat a banana. He recalls that, when Matt was really sick, he rarely saw his mother. “She was always leaving,” he says. But now, he adds, things are better. “Life is normal.”

IT’S A WEEK NIGHT, and about a dozen boys and girls turn out at the Thorsby High School gym for pickup hoops. “Home of the Thorsby Sabres,” the gym is always too warm, so someone fetches a couple of broomball sticks to jam open the two doors to the outside. Matt, who loves basketball like Fox did, remains philosophical about his limitations. “I can do all the moves, but I don’t have speed. Speed is what you need,” he says, pausing. “Oh well.”

The others cut him some slack—to a point. “They give Matt a bit of space to get the ball, but once he’s got it, he’s fair game,” says Kerry Peck, who coaches the school’s senior girls team. “Matt wouldn’t have it any other way.” Eventually, though, after little brother Joey repeatedly fouls him, Matt takes a swing at Joey’s shoulder, missing. He subs off and examines his bent glasses. “He hit me in the face,”

‘HAVING Matt around is great,’ says coach Peck. ‘He’s got that smile on his face all the time. I just think, “Ah, what a kid.’”

Matt says, incredulous. “I’m going to land him one the next time.” From the sidelines, mom doesn’t like what she sees. “Joey, if you put him in the hospital, you’re going to be next.”

On another day, Matt drives his latemodel pickup truck—quad cab, four-wheel drive, big engine and a canopy—into town, where a school bus takes the senior boys and girls basketball teams for an end-ofseason round of laser tag in Edmonton, an hour’s drive away. Matt, the boys team manager, jokes with the others as they enter a

cavernous space that resembles a carnival house of horrors. Black light makes anything white glow. Theatrical fog clouds the maze of ramps, tunnels and peepholes. ZZ Top grinds out Sharp Dressed Man over the loudspeakers. As the teens hunt each other with guns that fire red lasers, Matt turns out to be a pretty good shot, twice coming in seventh out of the 23 players. “Having Matt around is great,” says Kelly Peck, Kerry’s burly twin brother and the coach for the senior boys. “He’s got that smile painted on his face all the time. I just think, ‘Ah, what a kid.’ ”

Andrew McKee, Thorsby High’s principal, marvels at Matt’s accomplishments. He’s an active member of the Thorsby 4-H Club and the student council’s senior vicepresident. Despite missing a lot of school because of the chemo, Matt still had grades good enough to allow him to take the advanced stream of academics. “For Matt, there is no need for grandstanding, bravado or sympathy,” says McKee. “All Matt wants is to be a teenager who does what teenagers do.”

THE STOLLERY Children’s Hospital in Edmonton features a cheery atrium, elevators with panoramic views and soaring catwalks lined with plastic greenery. On the second floor, through a corridor of lively yellow, green and blue walls, is the tiny office belonging to Dr. Paul Grundy, director, division of hematology, oncology and

palliative care. Tall, tanned and trim, Grundy was one of the first doctors to treat Matt. “Of all the things that parents worry about, very few if any spend any time worrying about their child getting cancer,” says Grundy. Illegal drugs, running with a bad crowd, and flunking out of school tend to head the list, so that when cancer is raised, parents often descend into a nightmare of disbelief and shock.

Grundy’s way is to be honest and to the point. “Very rarely is there a situation where there isn’t some hope of curing the cancer,” he says, “and in many situations there’s a lot of hope of curing it.”

If you take all children with cancer, he says, “we believe that in this day and age we can cure 75 per cent.” Matt has now been cancer-free for 3V2 years. “If you look at all the kids where it has recurred, it has usually recurred before now,” Grundy says. “As best as we can tell, Matt’s cured of his osteogenic sarcoma.”

Overall, though, progress in treating osteosarcoma has slowed considerably since chemotherapy was added to the arsenal in the 1980s. “We really have not seen the development of any particularly more effective new drugs in the last decade,” says Grundy. In many ways, it’s understandable. Curing cancer, he says, “is more complicated than putting a man on the moon.”

Few know as much about those complications as Jeremy Squire. Now a molecular biologist and senior scientist at Princess Margaret Hospital in Toronto, Squire first saw a picture of the inside of an osteosarcoma cell a couple of years after Terry Fox died. A normal cell has 46 chromosomes. Typically, an osteosarcoma tumour has anywhere between 60 and 90 chromosomes per cell—at least half of which are abnormal in some way, says Squire. “The chromosome pattem in the tumour cells was absolute chaos, it was just bizarre,” he recalls. Research, such as the mapping of the human genome, and lots of money, have added clarity. “We’ve found that when you use the appropriate methods, it’s not quite such a chaotic picture as you might think,” he explains. “You can start to see that there

are consistent patterns within that chaos.” From patterns emerge solutions. The huge chromosomal overload within bone cancer cells makes them extremely adaptive and able to skirt various chemotherapies. “My lab and many others are looking for novel types of drugs that really address the more fundamental thing that’s wrong with the tumour cells,” says Squire. “In the case of osteosarcoma, if a drug can somehow target whatever it is that makes that cell so unstable, then it’s possible to turn off the cell’s adaptive response.”

THE chemo can be mutagenic, and may later cause cancers. Still, the alternative to running those risks is death.

CHILDREN WHO SURVIVE their cancers are often described as wise beyond their years, enduring as much as they have at such tender ages. Observers talk of missed childhoods. Matt’s paid a heavy price. The chemo weakened his bones so that they’re brittle compared to the average person’s. Some side effects might not appear for two or three decades. One of the medications is known to weaken the heart muscle. Because the chemotherapy drugs can be mutagenic, they may cause cancers later on. Still, the only alternative to running those risks for someone like Matt is death—no alternative at all.

And now he has his life, however altered. After the operation that shortened and spun his leg around, Matt was apprehensive about going out in public. Seated, and without the prosthesis, his right foot points downward. People stare. His dad advised him to roll up his pant leg and remove his sock for the first couple of days back at school so all the students could take a peek. “They all looked—some were curious, others were creeped out,” says Mark Bendoritis. “They asked questions, but once the secret was out, they lost interest, and Matt was just Matt again.”

His 14-year-old sister, Brianne, remembers the family focus being totally on her brother. “I was kind of jealous of Matt,” she says sheepishly. “Not because he had cancer, but the fact that he had mom and I didn’t.” The memory hurts so much that tears begin to well. Today, the two older siblings bond in harmless mischief, as when Matt takes his leg off in a restaurant. “We wait to see how long it takes for the waitress to freak out,” says Brianne, offering the slightest hint of a smile.

Matt wants to be a farmer. His father isn’t so sure—it’s a tough life. But whatever Matt ends up doing, he knows his inspiration. He owns six Terry Fox T-shirts and, even when he’s not wearing one, people say he reminds them of the famous one-legged runner from British Columbia. Like everything else, Matt shrugs it off. “There’ll never be another Terry Fox,” he says. “He touched people like no one else.” li1]