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From cancer survivor to advocate, Monroe teen shares his story for campaign

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From cancer survivor to advocate, Monroe teen shares his story for campaign

Ten years ago, Carla Volpe dreamed of moments like the one she experienced June 9 at Six Flags Great Adventure in Jackson.

Her son, Johnny, who is entering his senior year at Monroe Township High School, has been cancer free for a decade.

Now a member of a survivors program called LITE at Rutgers Cancer Institute, he along with 200 survivors and supporters from New Jersey boarded the theme park's Runaway Mine Train to help raise cancer awareness as part of the Coasters for Cancer program, a partnership between RWJBarnabas Health and the Rutgers Cancer Institute of New Jersey.

“It was so scary,” Carla Volpe said. “The first time I heard that he had cancer I thought, ‘Well, this is it. I’m going to lose my little boy.’ But he got through the treatments and he’s doing well. But we have to fight for better medicine for children, we have to develop something that isn’t as harsh. The treatments were hard on his body and he was sick a lot. We were in the hospital for most of two years.”

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Johnny Volpe and his father, Vinny Volpe, prepare for the inaugural ride of the Coasters for Cancer campaign on June 9 at Six Flags Great Adventure in Jackson. 

Johnny remembers the day he learned about the cancer diagnosis like it was yesterday. It was May 2009, two days after his seventh birthday. He was  experiencing back pain for some time and his parents thought it was related to growing or from roughhousing with his older brother, Christian. But after his parents discovered swelling in his abdomen and one of his legs, they took him to a pediatrician, then to an emergency room for X-rays and other tests.

Johnny shared his story during the Coasters for Cancer event.

“That night was one of the longest nights I can remember, and one of the scariest night too … my parents were taken into another room to discuss the findings with the doctor," he said. "That was the moment my mother and father, [Vincent] found out that I had a mass in my pelvic and abdomen area that was pushing against my spinal nerves, and the mass was cancerous.”

Johnny was diagnosed with Pre-B cell lymphoma.  He began an intensive chemotherapy and spinal and cranial radiation treatment. The course was successful. He said the cancer disappeared several months later, and after treatment for two years at Rutgers Cancer Institute and Bristol-Myers Squibb Children’s Hospital at Robert Wood Johnson University Hospital, he was declared cancer free.

“After two years I remember my doctor came in the room and told me there was no evidence of the cancer,” Johnny said. “Technically, I’ve been in remission since August 2009, but I had to finish the treatment, which I’ve been off of since 2011. Now, I’m pretty much a normal kid. I get to do whatever I want.”

Being a voice for pediatric cancer awareness 

What he wants to do, in addition to studying to become a chef after graduation, is help raise cancer awareness. He said events such as Coasters for Cancer is a great way to spread the word about prevention, treatment, and the importance of finding remedies that are designed for young patients. In addition, his involvement with LITE allows him to help educate pediatric cancer survivors about treatment.

“Adult patients have the same medications as children,” Johnny said. “There needs to be better medicine for children, so they don’t have the same harsh symptoms.”

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Johnny Volpe shares his 'survivorship' story to an audience of 200 cancer survivors and supporters to help kick off the Coasters for Cancer Campaign.

Working with the Coasters for Cancer campaign is one way he hopes to get that message out. The program strives to advance health care while promoting health and wellness initiatives, and education in communities across the state. The campaign includes several onsite elements at the park. The main entrance fountain will be branded for RWJBarnabas Health and Rutgers Cancer Institute, with all coins collected going to support cancer research. There also will be signs and digital billboards and content on the Six Flags TV network to promote cancer awareness.

Additionally, parkgoers entering the Runaway Mine Train line can show support to cancer survivors using a specially designed Snapchat geofilter to share photographs. As part of the program, colorful handprints, previously collected by cancer survivors and supporters throughout New Jersey, were transferred onto the Runaway Mine Train coaster cars. The coaster will remain wrapped in the decorated handprints through the close of the park in the winter. Six Flags Great Adventure also will host four blood drives throughout the season to strengthen and stabilize blood inventories at RWJBarnabas Health. Also, customers who purchase tickets online will have the opportunity to donate $1 in support of cancer research.

“It’s truly inspiring to team up with RWJBarnabas Health and the Rutgers Cancer Institute of New Jersey to support a cause that impacts so many families,” said Six Flags Great Adventure President John Winkler. “We all share a vision to make a difference, and through an innovative, collaborative effort, the Coasters for Cancer campaign offers a unique platform to amplify awareness for cancer while enjoying a visit to the World’s Ultimate Thrill Park.”

Johnny said he is grateful for the support he received while sick. While in the hospital he was home-schooled and saw teachers at the hospital. He said the Embrace Kids Foundation, which works to lighten the burden of families with cancer, sickle cell, and other serious health challenges, also reached out to the family. He also became friends with students from Rutgers who worked with young patients during the summers.

“He was a strong little boy. He got me through it I think,” his mother said. “He didn’t’ feel sorry for himself and wanted to feel better and get back to his friends and his school, because he missed out on a lot of that.”

Today, Johnny is looking forward to senior year, an internship with high school teacher Amanda Docherty to begin learning about a culinary arts career before he, hopefully, attends the Culinary Institute of America. It’s a career he’s had his eyes set on for a decade.

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Johnny Volpe, second from Left, a 17-year-old cancer survivor and current high school student from Monroe, is joined by, from left, his mother Carla Volpe; Dr. Steven Libutti, director, Rutgers Cancer Institute of New Jersey and senior vice president, Oncology Services, RWJBarnabas Health; and his father, Vinny Volpe.

“It started in the hospital. While I was getting treated I’d lay there watching Food Network, and I was always really hungry. That’s how it started,” Johnny said.

Now, thanks to that hospital stay, Johnny has a new lease on life and possibly a new career goal. It’s something his family had hoped and prayed for all those years ago.

“Every time his birthday comes around, it’s always on your mind,” Carla Volpe said. “I don’t think it will ever be the same, but we’re grateful for every day and happy he is where he is.”

 

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