Merrick boy is inspiration for cancer-fighting dinosaur

'Oliver the Brave' spreads awareness of childhood cancer

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When Bernadette Volpe saw black circles under her son’s eyes, she knew that his intermittent fevers had not been just that. Around the same time, in the summer of 2011, her husband felt a lump on the back of their 2-year-old’s head, and Bernadette recalled, “It hit us like a ton of bricks.”

That Aug. 4, Carsyn Volpe was diagnosed with Stage 4 neuroblastoma, a rare form of childhood cancer that affects nerve cells.

“From there, the journey began,” said Volpe, an East Meadow native who now lives in Merrick, explaining that her family had never been prepared to cope with Carsyn’s diagnosis. Carsyn’s sisters, Caydan, and Camryn, now 13 and 11, were too young to understand the illness. And Volpe said that she felt that she was dividing her energy among trying to save her son, guiding her daughters through his fight and coping herself.

They needed guidance, and it came in the form of a dinosaur.

A new kind of children’s book

Volpe met Lynn Faherty at Grace Lutheran Church in North Bellmore, where their children attended pre-kindergarten. Faherty, an artist from Merrick, became friends with the family, and wanted to use her work to help Carsyn. Volpe told her that he loved dinosaurs, so Faherty made him a sweatshirt with an image of a dinosaur on it.

She kept in touch, always asking what the family needed. “I knew in my heart there was something I was supposed to do,” she said.

Volpe told her that the family was struggling to teach their children about Carsyn’s illness. “What was going on was very difficult,” she said, “because there aren’t many children’s books about cancer.”

Pouyan Gohari, an oncologist at Nassau University Medical Center in East Meadow, said that cancer is a challenge to explain to children as well as adults. “We start by saying that there’s something in the body that doesn’t belong there,” he said, “and now we’re going to try to have it taken care of.”
Other issues, Gohari added, include the effects of treatment, the social effects the illness has on any age group and the possibility that it may be terminal, “and that is a very difficult topic for any patient.”

After three years of brainstorming and collaboration with social workers and medical professionals, Faherty wrote “Oliver the Brave,” a story about a young dinosaur fighting cancer and the effect it has on his family.

Carsyn the Brave

Carsyn’s cancer was so aggressive that he required adult treatments and five rounds of chemotherapy. Surgeons removed his adrenal gland, where the cancer metastasized, and he was hospitalized for six months after he underwent a stem cell transplant.

“That was probably the worst part — [his] being separated from the family,” his mother said.

After the transplant, Carsyn endured localized radiation, immunotherapy and additional cancer fighting drugs until his doctors determined that he had “no evidence of disease” in October 2012. This meant that the cancer was no longer traceable.

“He knows what he went through, and he remembers some of being sick,” his mother said. “We don’t hide it at all. We want him to know.”

Carsyn, now 9, is partially deaf, a lasting side effect of chemotherapy, and wears hearing aids that his family calls his “super ears.” He has scars from the surgery that he likens to his mother’s tattoos. And thanks to physical therapy, he strengthened his muscles and gained the confidence to start playing on local baseball and soccer teams.

“He’s very athletic and very intelligent,” Bernadette said. “If you saw him, you wouldn’t know that he has cancer.”

Oliver’s next chapter

Since writing “Oliver the Brave,” Faherty has created the Color Me Cancer Free! Foundation to raise money so she can donate her books to schools, hospitals and families fighting childhood cancer. She recently partnered with Steiner Sports, which has connected her with athletes who have signed her artwork to be auctioned off, and have made appearances at foundation fundraisers.

On Sept 13, the foundation hosted its most recent event, at Borrelli’s in East Meadow, where Basketball Hall of Famer Walt Frazier met with Carsyn; Luke Lang, 11, who recovered from leukemia three years ago; and Dakotah Maken, 8, who has brain cancer.

Faherty plans to write two more books chronicling Oliver’s fight with childhood cancer. “It just touches my heart to help these beautiful families that are having such a hard time,” she said.