This 12-year-old survived cancer, now he wants to
help others
A local children’s hospital 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 that began recently.
And when he saw that most books about the challenge of childhood
hearing loss “are really bad,” he wrote his own.
At age 12, Peter Zucca has already had a world of experience
with cancer. The preteen uses 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 wrote. “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) molds, 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 voices 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 leadership fellowship from Moore to spend her summer on the
sketches.
“It’s an incredible story,” the 22-year-old said during a recent
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 reached age
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 non-profit, the Peter Powerhouse Foundation, established a year ago
with his mother, Dawn, as president.
Peter has run a 5K race. He plays second base on his Little
League team. He swims and dives. And he dreams of pitching in the major
leagues, a goal he has shared with his friend David Dravecky, the former San
Francisco Giants and San Diego Padres pitcher who lost his throwing arm to the
same kind of tumour that took Peter’s leg.
Dravecky said he was taken with Peter’s “sweet spirit”.
“I was so impressed with how fast he was willing and able to
reach out and help other people,” said Dravecky, 59, who lives in California
and works as an ambassador for the Giants.
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 party, the Zuccas hired a photographer to spend the day
in their house on farmland in Montgomery County.
“We had all these cry stations upstairs and on the porches,”
said 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 Center in New York was able to remove
it. Peter was discharged, with a 24% chance of survival, his mother said.
Years of what she calls “scanxiety” followed. Every time Peter
would get ready for a checkup, the family would brace themselves. His mother
said they decided to make memories: Disney World. Martha’s Vineyard. That ride
Peter loved to go on at Chocolate World. Closer to home, a fountain at Plymouth
Meeting 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 a foot. His right leg failed to grow
properly because of all the chemo and radiation, so the family three years ago
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 an essay that won the national “Breaking
Barriers” essay contest held by Major League Baseball, Scholastic, and Jackie
Robinson’s daughter, Sharon.
“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 said the
tumour was different from his original cancer.
For the first time, 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,” said Dennis, 54, who works
in facilities management for a pharmaceutical firm. “You have to pick your
poison.”
Several months before he lost his right leg, Peter had met
Dravecky when the former major leaguer came to speak at a nearby church.
Since amputation of his left arm, Dravecky had become a
motivational speaker helping families cope with disease through a ministry he
runs with his wife. He gave the Zuccas his card in case Peter needed him.
At the time, the Zuccas could not figure out why Peter would
need Dravecky.
Dravecky talked to Peter before and after the surgery, helping
him through the phantom pains that can come with limb loss and facing that
first day back at school.
Dawn sent Dravecky a picture of Peter – in shorts, his
prosthetic leg in full view – just before he left for school.
“I thought, dude, that is so bold and so courageous, to enter
into this new environment totally exposed and willing to take the risk,”
Dravecky recalled.
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 (RM247,000), 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 $48,000 (RM182,000), and Peter is hoping to
raise enough for several more.
Peter, who will head to middle school in the fall, 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.” – The Philadelphia Inquirer/Tribune News Service
.
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