Photographers give their time for sick kids

March 31, 2010

It was taking Leslie Gilbert a few extra minutes to get the right shots, what with all the interruptions. It seemed as if every time Gilbert, a Mount Joy-based portrait photographer, snapped a few frames of Justin Caldwell, he decided he had other plans.

A smiling, squirming 20-month-old diagnosed with a brain tumor a little more than a year ago, Justin kept pausing the proceedings to fling himself into Gilbert's arms and smother her with hugs and kisses - at which point she laid aside her camera to accept and return. Moments like that don't happen every day in the Children's Hospital of Philadelphia's pediatric cancer treatment center, so nobody minded the delay.

Gilbert had come to Children's to take portraits of young patients and their families for Flashes of Hope, a national nonprofit that brings together professional photographers with children undergoing treatment for cancer or other life-threatening illnesses. The photographers donate their time while sponsors donate the funds for processing and supplies such as frames.

Justin's mother, Ayanna, said doctors weren't sure her son would live a year, let alone run around doling out uninhibited affection. When the time came for his shoot, she was glad to sit in, calling the session part of a process for her.

"I took pictures of him while he was in the hospital after his surgery, with all the tubes and wires," she said. "When you physically see where you came from, then you see how far you've come."

The photos are meant to be uplifting and powerful, and although they are in black-and-white, the kids definitely set the tone. At another recent Flashes of Hope shoot at Children's pediatric oncology center in Voorhees, a look of pride - almost wonder - crossed Christine Smagacz's face as the Delanco woman watched her son Matt, 8, strike a defiant pose before the camera.

Matt was showing off his Brian Westbrook Eagles jersey, flexing his muscles and mugging for the camera like a pro, which he is in a sense: Matt had his photo taken for Flashes of Hope once before, early in his cancer treatment. Since his diagnosis in December 2007, he's dealt with many challenges.

"He had them done bald, with hospital pants and all his [IV] poles. When they took those pictures, though, he was all smiles," said his mother.

As Joan Ford shoots photographs in Voorhees, Matt is sporting a head of thick, wavy auburn hair and a freckle-faced smile, along with an IV port in his hand for the chemotherapy he had earlier that day.

"It is what it is now," Smagacz said. "But in the beginning?" She pauses, locks her eyes on Matt again as he cavorts for Ford. "In the beginning, it's tough. Tough."

A $25 donation pays for one child's photo shoot, said Christie Kwait, the founder and director of Flashes of Hope's Philadelphia chapter. For that, families receive two framed photos with proofs and CDs the family can share or reprint. Sponsors can donate styling, such as hair and makeup, but often the children come just as they are.

For the photographers who often spend their days capturing weddings and corporate events, the program offers them an opportunity to put their professional skills to a compassionate use. Ford, of Marlton, was on her second shoot for Flashes of Hope at Children's Hospital-Voorhees, drawn to the project after reading about it in a trade publication.

"With two healthy preschoolers, when I read about the story, I thought I absolutely had to get involved," Ford said. "It's one thing to donate money, but to have a skill that I could use, to contribute something that I actually do well, that was very motivating."

Ford was initially nervous, but she was able to conduct the shoot without getting emotional - until it was over. "Once I go over the images on my computer, that's when it gets to me. I cry in front of my screen every time."

Gilbert, a mother of two boys, saw a note about Flashes of Hope in Parade magazine in 2008.

"I thought, this is my calling - this is something I need to do," she said. Then she had to photograph a 3-year-old recovering from an organ transplant.

"I walked out of there crying, thinking I can't do this," Gilbert said, but she stayed with it and has worked on a dozen shoots.

Flashes of Hope was started in 2001 in Cleveland by Allison and Kip Clarke after their son was diagnosed with cancer. Since then, chapters have formed nationwide and volunteers have provided portraits to thousands of children and their families.

Since the Philadelphia chapter began in 2006, 479 children have been photographed. Shoots take place at Flashes of Hope's partner hospitals and at several summer camps for seriously ill children. Right now, Children's is the only local hospital working with the program, but the organization is looking to grow, said Kwait of Blue Bell.

She started the chapter as a way to help families like hers - her daughter Marti, 8, battled neuroblastoma for a year after a diagnosis when she was 18 months old.

It's one of the devastating parts of a cancer diagnosis, the way it alters a person's world in an instant. When the patient is a child, the parents almost always can recite the exact date when their reality changed - in a flash.

That's how it happened when Maddox Malavé, 5, was diagnosed with an atypical teratoid rhabdoid tumor, or ATRT, a rare childhood cancer that forms tumors along the brain and central nervous system. Maddox had surgery to remove as much of the cancer as possible and has been in treatment to battle the rest. His parents, Jeanette and Eddie, say their world changed with the diagnosis, but many things about their son - including his smile - remained constant.

"After his surgery, we walked around the hospital, and they have all these photos, and they're such beautiful pictures," Jeanette Malavé said, watching Maddox sit before Gilbert's camera. The portraits gave her a feeling of peace and hope. So when the chance came to have Maddox's photo taken, they signed up.

Several parents said the portraits will provide a reference point so that one day in the future, when the cancer is beaten, the hair has grown back, and the scars have healed, they can look proudly at the photos, as if to say, See how strong you are? See how far you've come?

Alyssa Ricciardi, 6, had her photo taken a few years back while being treated for cancer and recovering from a kidney transplant. Her mom, Dana, brought her back to Children's from South Plainfield, N.J., for another Flashes of Hope session this winter - this time cancer-free.

"It really is wonderful to look back at something, and you see the difference," she said.

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