A program new to Long Island shows that drugs aren't the only way to help fend off a disease that steals not just its victims' health, but precious time from their childhoods.
On Wednesday, the inaugural class of Pablove Shutterbugs, a group of 30 pediatric cancer patients who took photography classes either last fall or in the spring, will show its work at the Stony Brook University Cancer Center. Proceeds will go toward helping fund more five-week sessions.
The program is offered through The Pablove Foundation, a California-based nonprofit whose primary goals are to raise money for pediatric cancer research and "improve the lives of children living with cancer through the arts."
One of those is Andrew Holtzman, 16, who lives in Centereach and is being treated for brain cancer.
"I loved it so much," said Holtzman, a junior at Centereach High School who participated in the fall session. "I loved taking pictures, meeting the other kids and being creative."
The Shutterbugs program began offering photography courses to help children in Manhattan and Los Angeles in 2011 and New Orleans in 2014. Last year, thanks to a $200,000 grant from the Livestrong Foundation, The Pablove Foundation expanded Shutterbugs to a dozen more communities around the country, including Stony Brook.
The Pediatric Hematology/Oncology Program at Stony Brook Children's Hospital was among the 12 out of 25 cancer centers whose applications were successful. The hospital offered the opportunity to participate to its patients. No child who met the criteria (ages 6-18, current patient or in remission) was turned away, said Brad Woody, a regional program manager for The Pablove Foundation.
Every Shutterbugs student was given his or her own Nikon Coolpix camera, along with a memory card, rechargeable batteries and a charger, a camera bag and a Pablove T-shirt, said Jessica Rotkiewicz, a multimedia producer for Newsday and an adjunct professor in the School of Journalism at Stony Brook University who signed on to teach the Shutterbugs. She had the help of seven volunteers over the course of both sessions.
Birds and worms, etc.
The first four classes -- each two hours long, held on Saturday mornings at the Charles B. Wang Center on the Stony Brook campus -- covered such concepts as perspective and framing, light and shadow, portraiture and storytelling, and included a field trip around the campus.
In the first session, students learned about the "bird's-eye" and "worm's-eye" perspectives, along with the importance of proper framing -- and making sure objects in the background don't appear to be sticking out of people's heads.
Another session dealt with pictures of people. Rotkiewicz recalled a student taking a close-up of his grandmother's hand. In the fourth session, "Telling a Story," the class ventured out onto the Stony Brook campus, where students applied their knowledge of perspective, framing and light. For homework, they were assigned to document a day in their life in pictures.
Especially popular, Rotkiewicz said, was the "Painting With Light" session, in which students experimented with long exposures using the camera's "fireworks" setting.
"That was definitely fun," said Haley Mahr, 16, of Islip, who participated in the fall Shutterbugs program. "We turned off all the lights in the room and we had Christmas lights and glow sticks and other things, and created a lot of cool effects. It was one of the coolest things ever."
Mahr's non-Hodgkins lymphoma is in remission; she said she enjoyed the camera work and the camaraderie.
"I definitely learned a lot about photography, and that was fun, and also the social aspect of it, being around other kids who were in the same situation," she said.
According to the American Cancer Society, about 15,780 American youths and 175,000 children and teens worldwide are diagnosed each year with cancer. The Pablove Shutterbugs program is designed to improve participants' quality of life, Rotkiewicz said.
"Cancer is left at the door," she said. "Some of them are obviously pretty sick, or you can tell they're a little sluggish or a little pale. But we're not there to focus on cancer. We're an outlet for them."
The Pablove Foundation is named for Pablo Thrailkill Castelaz, a Los Angeles boy who died of cancer in June 2009 at age 6. His parents, music video and television producer Jo Ann Thrailkill and Elektra Records president Jeff Castelaz, established the foundation in 2009. Since 2010, officials at the nonprofit said it has granted $900,000 to 13 institutions studying childhood cancer.
The foundation also sponsors free symposiums that allow parents and caregivers to learn about childhood cancers and treatment options; talk to experts; and meet other families fighting various forms of the disease.
According to the foundation's website, the Shutterbugs program is its signature arts program. It benefits students and their families in different ways. For 7-year-old Aubri Krauss, who has leukemia, learning photography during the spring Shutterbugs session brought a measure of self-confidence.
"She definitely gained independence and confidence from being in the class herself," said her mother, Darcy Krauss, of Centereach. "She kind of came out of being a shy little girl. It gave a boost to her. It was really good for her to be in class with kids who had dealt with the same thing she did. And even now that the class is over, she brings the camera everywhere."
Her mother said Aubri likes to photograph sunsets. Another favorite subject is Dustin, a calico kitten Aubri got as a present three years ago.
The spring Shutterbugs classes were a welcome respite for Alexander Shulder, an 8-year-old from Coram diagnosed with leukemia in December.
"It was a very good opportunity for Alex and the other kids to get out and just be a regular kid, without having to deal with their medical issues," said his father, Adam Shulder.
A 'creative voice'
The fifth class celebrated the students' work. Rotkiewicz and the students reviewed photographs and made their selections for the gallery show, which many of them plan to attend.
Thanks to technology, the spring course celebration included a student who took her lessons in her hospital bed and shot her homework assignments in the hospital's lobby and playroom. Pablove's website notes that such a scenario was a primary reason photography was chosen, because it allows patients to participate in the program when they are hospitalized.
Erika Gottlieb "was able to do everything that the other kids did except go outside," said her mother, Cindy Gottlieb of Selden. For the final class of the spring session, Erika, 12, attended using FaceTime, the videoconferencing program.
"Everybody was saying hello to her," Gottlieb said. "They saw her pictures and said they hoped she was feeling better. Some said what a beautiful smile she has. It made her feel very welcome. It was very touching."
Erika has Ewing's sarcoma, a rare bone cancer that accounts for 1 percent of all childhood cancers.
"She was wonderful," said Michelle Chorney, 32, a commercial photographer from Nesconset who volunteered to help teach the courses. "She was going through traumatic things, but she loved the program."
The Shutterbugs gallery show runs from 5 to 8 p.m. Wednesday at the Stony Brook University Cancer Center. All the work is for sale, at $100 per print. The proceeds go back into the Shutterbugs program, said Woody. Stony Brook and the other 11 sites need to raise $35,000 to offer the program again next year, he added.
Newly minted Shutterbug Layla Warsaw sees the world in a new way -- through the eyes of a photographer. Layla, 9, lost a kidney to cancer because of Wilm's tumor -- the same kidney cancer that Pablo Castelaz had -- and endured months of chemotherapy and radiation treatment. Today, the Mastic resident is cancer-free.
Danielle Warsaw recalled that her daughter couldn't even get her camera to focus when the spring course began.
"By the end of the class, she was taking these amazing photographs," Warsaw said. "I was in awe of what she could do. This gave her a creative voice."