HEALTH

Aged 12, a cancer veteran helps others, and writes a book

Peter Zucca has made 13 trips to the operating room. Before he was two, he had required 51 units of blood. Eventually, cancer took most of his right leg. Yet Peter emerged a superhero of sorts

PUBLISHED : Tuesday, 04 August, 2015, 12:12am
UPDATED : Tuesday, 04 August, 2015, 12:12am

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A children's hospital in Philadelphia had too few of the little wagons that young patients prefer to wheelchairs, so Peter Zucca started a foundation to raise money for a fleet of them.

A patient couldn't get blood for a transfusion, so Peter planned a series of drives to help fix the situation.

And when he saw that most books about the challenge of childhood hearing loss "are really bad", he wrote his own.

At the age of 12, Peter Zucca has already had a world of experience with cancer. And he's using what he has gone through to make life easier for others like him.

In Peter Learns to Listen, he shares his own experience with hearing loss, a side effect of treatment for the cancer that struck him before his first birthday and nearly killed him.

"One of my chemo drugs was ototoxic," Peter writes. "Ototoxic is just a big medical word that means the medicine hurt my hearing."

He offers tips to help other hearing-impaired children: "Make sure to get the right [ear] moulds, or they'll fall out when you hang upside down in a tree."

And he shares how his experiences gave him what he calls his "superpowers".

His teachers wear microphones that project their voice into his hearing aids.

"If your teacher doesn't mute the FM system or turn it off you can hear top-secret stuff," he writes.

Katie Brubaker, a junior at Moore College of Art and Design and the daughter of a pastor at Peter's church, illustrated the manuscript. She received a fellowship from Moore to spend her summer on the sketches.

"It's an incredible story," the 22-year-old says during an afternoon visit with the Zuccas. "Instead of taking the side of … it's so sad, the book is meant to encourage people."

Peter certainly understands the tribulations of child cancer patients. He has made 13 trips to the operating room. Before he was two, he had required 51 units of blood. Eventually, cancer took most of his right leg.

Yet Peter emerged determined, a superhero of sorts, hence the name of his nonprofit, the Peter Powerhouse Foundation, established a year ago with his mother, Dawn, as president.

Peter has also run a 5km race. He plays on his Little League baseball team, and swims and dives.

It was Christmas Eve 2003 when Dennis and Dawn Zucca learned that their 10-month-old boy had rhabdomyosarcoma, a cancer that attacks the muscular system. The cancer was in his pelvis and had spread to his lungs.

The Zuccas' only child began to collapse to one side. He went from crawling to dragging his body along. He could not hold down food.

Two months later, the Zuccas found themselves simultaneously planning Peter's first birthday and his funeral.

"Enjoy him the best you can" is their memory of what the doctors advised, giving them two months.

For his birthday party, the Zuccas hired a photographer to spend the day at their house.

At that point, your hand is forced. You have to pick your poison
Dennis Zucca, Peter’s father

"We had all these cry stations upstairs and on the porches," says Dawn, 51, a former office manager. "But nobody was allowed to cry on the first floor. We wanted it to be a celebration of his life."

But several months later, the tumour began to shrink, and a doctor at Memorial Sloan Kettering Cancer Centre in New York was able to remove it. Peter was discharged, with a 24 per cent chance of survival, his mother said.

Years of what she calls "scanxiety" followed. Every time Peter would get ready for a check-up, the family would brace themselves. His mother said they decided to make memories: Disney World, Martha's Vineyard, a ride Peter loved to go on at Chocolate World and closer to home, a fountain at a mall.

Five years later, on Christmas Eve 2008, Peter's doctor called.

"I have the best gift - you're cured," he told Peter.

The cure had its price. In addition to hearing loss, Peter suffered nerve damage in his hands and one foot. His right leg failed to grow properly because of all the chemo and radiation, so three years ago the family decided to have it lengthened, a painful process in which a metal cage the size and shape of a coffee canister was attached to his leg.

"It had pins and wires in many places with a wire that went into my bones," Peter wrote in a piece that won the US national Breaking Barriers essay contest. "Most every night, my mum would turn screws that pulled my bone apart. I called it 'my torturing device'."

In November 2012, the device came off, and just as Peter was learning to walk again, a lump was discovered in the leg. His mother says the tumour was different from his original cancer.

Dennis and Dawn Zucca were at odds over what to do: lose the leg, or risk losing the boy. Dawn pleaded for amputation. Dennis relented.

"At that point, your hand is forced," says Dennis, 54, who works in facilities management for a pharmaceutical firm. "You have to pick your poison."

It wasn't easy. Peter writes: "For a while after that, I was sad most of the time."

The hardest part still, Peter said recently, is "not being able to play the same way".

He has turned his focus to others.

When a nurse at Nemours/Alfred I. duPont Hospital for Children mentioned that a girl who needed a wagon for a blood draw didn't have one, Peter recalled how he used to shoot his doctors with squirt guns, a playful respite from all the needles and probing.

"We have to buy them some wagons," Peter told his mother.

They called a lawyer who had been a patient with Peter at Sloan Kettering. She referred them to a colleague at the Duane Morris law firm in Philadelphia, which performed the work pro bono.

The foundation has raised about US$65,000, enough to buy 100 wagons for duPont and a pair of cinema vision goggles that allow children to watch movies when they get MRIs instead of being sedated. Each pair costs US$48,000, and Peter is hoping to raise enough for several more.

Peter still goes for annual scans. So far, so good, his mother says.

As for his future, he dreams of Princeton and computer programming. On a recent afternoon, all he could think about was getting started on a play date. He was fidgeting, asking his mother when the interview would be over.

Peter Powerhouse needed some time for fun: "I was thinking we'd play basketball."

Tribune News Service