Nicholas Pedone, a reminder to ‘fight hard and smile big’

September is Childhood Cancer Awareness Month

Posted

By Danielle Agoglia

dagoglia@liherald.com

On Sunday, Sept. 10, Glen Cove will host the fifth annual Nicholas Pedone 5k to benefit childhood cancer.

Nicholas Pedone was only seven in 2013 when his family lost him to Neuroblastoma, a rare and deadly form of childhood cancer.

Nicholas loved sports. He was a great hitter in baseball, was a goalie in soccer and had just started playing basketball. Not only did he love to play sports, but he loved to watch them. When he was only three he would scour the sports section of the newspaper for the scores. With dreams of becoming a sports commentator, he impressively memorized every player on every team in every state. His favorite sports to watch were football, rooting for the New York Giants, and basketball, when he’d show his support for the New York Knicks.

Nicholas’ mom, Josephine, said he was not your average child. “He wasn’t one to climb trees, he wasn’t one to throw rocks,” she said. “He was always so cautious and caring.”

On Thursday, October 18, 2012, Nicholas came home from school complaining about a pain on the right side of his body. The following day, the pain persisted. That evening, Nicholas suffered a vomiting episode and high fever. When the symptoms continued, the Pedones visited the emergency room to eliminate the possibility of appendicitis. After several more doctor visits and two trips to the emergency room, tests were conducted on Nicholas’ liver and blood. A CT scan of the abdomen revealed a large, aggressive tumor.

Nicholas underwent surgery on Oct. 25 to remove the mass. About one week later, a final diagnoses confirmed what had been feared — that Nicholas would be battling Stage 3 Neuroblastoma.

To increase his odds of survival, Nicholas needed a stem cell transplant in combination with chemotherapy to reduce the chance of a relapse.

With this stem cell transplant, there is a small percentage of cases that do not survive. Sadly, Nicholas fell into this category. Because of the high dose of toxic chemotherapy, he developed a rare lung complication.

Nicholas died on May 26, 2013, from the complication while recovering from the transplant.

Even before his death, the Glen Cove community, where Josephine had lived for 45 years, stepped up to the plate. Nicholas attended the first annual 5k in his name, which was planned by his cousin Anthony, a former Glen Cove High School student. Over 700 people came out to participate. Since then, the 5k has transformed into the largest fundraiser for the Fight Hard Smile Big Nicholas Pedone Foundation.

The name of the foundation was inspired by Nicholas himself. During his battle with cancer, his parents made sure to keep a smile on their faces so Nicholas would keep a smile on his.

“As a parent you want control, you want to be able to protect your children from harm; we had no control over his diagnosis,” Josephine said. “But the one thing we had control over was his mental state of mind and how to protect his smile.”

The goal of the foundation is to support children who are battling cancer through a care method rather than a cure method. Josephine said they don’t raise enough funds to make a difference in the search for a cure, but they do raise enough to make a huge difference in local hospitals and the lives of the children there now. Funds raised help create SmilePAKs, a personalized care package filled with items like a fleece blanket and stuffed animal to bring a smile to the child’s face.

Funds also support the HOP4Kids, a hospital outreach program that focuses on how to bring a smile to a child’s face while in the hospital. The HOP4Kids program recently presented Northwell Cohen Children's Medical Center, in Lake Success, with a $250,000 grant to be used to renovate their Pediatric HEM-ONC playroom. It has also funded $25,000 towards the "Game On" Project at Winthrop University Hospital, where Nicholas was treated, which consisted of eight brand new 46 inch screen TV's in its eight dedicated oncology rooms, along with brand new Xbox One Platforms, new wiring, remote controls and a gaming library for each room.

Reflecting on his seven years on earth, Josephine said Nicholas was more than just a gift to her. “He has changed lives, he has saved lives,” she said. “He has inspired other people to live life

differently.”

Josephine said bringing global awareness to childhood cancer is the most important way people can help. September is Childhood Cancer Awareness Month, and she encourages everyone to spread the word and represent the movement by displaying a gold ribbon.

Registration for the 5k is $25 and open online until the day before. Day-of registration is also welcomed for $30.

Check-in opens at 7 a.m. in front of Glen Cove High School. A Fun Run for children under 10 starts at 8:15 a.m., and the 5k begins at 9 a.m. Following the run, an award ceremony will take place on the football field. For more information and to register or donate, visit www.fighthardsmilebig.org.