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anaplastic ependymoma

Thomas Scully, second from left, and his family out fishing on a boat. Photo from Despina Scully

By Desirée Keegan

Thomas Scully’s life can be summed up by the lyrics of one of his favorite songs, “The Man,” by Aloe Blacc:

I played my cards and I didn’t fold. Well it ain’t that hard when you got soul (this is my world). Somewhere I heard that life is a test. I been through the worst but I still give my best.
God made my mold different from the rest. Then he broke that mold so I know I’m blessed (this is my world).

Thomas, 12, of Miller Place, died on July 7 after a long battle with anaplastic ependymoma, a form of brain cancer. Although he grew increasingly sick over the last few years, Thomas was said to always have a smile on his face, a terrific sense of humor and was always concerned about others.

Thomas Scully and his cat Snowflake. Photo from Despina Scully
Thomas Scully and his cat Snowflake. Photo from Despina Scully

Thomas was so full of life that, even while battling a lung infection the day before he passed, his mother Despina said she put music on, and he was dancing in his bed.

“All the nurses and doctors came running and they were amazed that he was doing that,” she said. “They’d never seen anything like it before, and that was Thomas. He never stopped fighting. He just loved being here. He was strong, resilient and hardheaded, and wasn’t letting anything hold him back. He loved life.”

He also cared deeply for others, and even while fighting his own battles he was more concerned about how others were feeling.

“He always was advising people, talking to people, and here while he’s going through this he was making people happy, always wanting to make people laugh and cracking jokes and doing magic tricks with his friends,” his grandmother Helen Vidal said. “He’s just an incredible, incredible little boy. He was so sweet. He was always so polite, always trying to please everybody, always very in tune with people and always advising people to take care of themselves.”

In his short time, Thomas also made sure to soak in every second of life.

His aunt Joelle Manzo, of Miller Place, sister of Thomas’ father James, said that while the family was vacationing in Fort Myers Beach, Fla., they were boogie boarding prior to a storm. As the waves rolled in and everyone came out of the water, Thomas continued to drift along, taking it all in, Manzo said.

“He wasn’t going to let anything go by without taking it in,” she said. “And I think we should all live like that. We forget to. We take things for granted. We all think that we have time, but we don’t. The talks that Thomas and I had have blown my mind. He was so wise beyond his years.”

Thomas shared many hobbies with his friend Robby Fitton, who he met in 2012 in at North Country Road Middle School.

Thomas eats dinner at Wasabi, his favorite restaurant, with best friend Robby Fitton, at left. Photo from Concetta Fitton
Thomas eats dinner at Wasabi, his favorite restaurant, with best friend Robby Fitton, at left. Photo from Concetta Fitton

“Back before he got very sick we played outside a lot,” Robby said. “He loved baseball. He also loved playing video games, riding around in his golf cart, playing the card game Crazy Eights and going to Wasabi, his favorite restaurant, I felt really bad for him that he had to go through that all and it was upsetting to see him like that because he’s my age and had a very serious sickness.”

But he was there for his friend, and the two continued to get together at least once or twice a week. Once Thomas found himself in the hospital, Robby visited him there, too.

“It was tough seeing him with IVs hanging out of his arms and all the treatments he had to go through, but he always stayed positive,” Robby said. “I thought of him as one of my best friends because if something happened to me he would always call or text me to check and see if I was OK. We’d always be there for each other, that was a big thing with our friendship. He was special in his own way. I miss him.”

Thomas also had a lot of strength, and his mother called his battle “one heck of a ride.”

“He kept us going,” Despina Scully said. “He was our strength. I’m so unbelievably proud and feel so unbelievably blessed to be his mother and to have gotten the time that I had with him. I feel so lucky to be his mom.”

Thomas gives a thumbs-up in his fight against childhood cancer T-shirt. Photo from Despina Scully
Thomas gives a thumbs-up in his fight against childhood cancer T-shirt. Photo from Despina Scully

Those who knew Thomas described him as very humble. His mother said that if you told him you brought him a leaf because you were thinking of him, it’d mean the world to him.

He was also outspoken.

While watching other children with cancer on television, he would ask his mother, “Why can’t I also be on television?” When his mother asked, “What would you say if you were on TV?” his response was to tell everyone, “Hello, world. You need to be kind to each other, embrace and love each other.”

Scully is trying not to let that message go.

“He was never negative — he would always see the good,” she said. “That’s what I’m trying to hold onto. I’m getting caught up in being upset that he’s gone and that he’s not coming back and how things happened, and I’m trying not to do that because I can’t get him back. He’s gone. I’m just trying to hold onto all those things that he was trying to tell me while he was here and I was just too busy worry about what medicines and what treatments and where he’s going to go and how we’re going to beat his cancer, and I wasn’t there, like I should have been. I wasn’t hearing him. And now I hear him, and I don’t want to let that go.”

Thomas is survived by his parents James and Despina Scully; his brother James Jr.; his sister Jillian; his grandparents Emerson and Helen Vidal, and James Scully, husband of the late Jean Scully. Religious service was celebrated at the Greek Orthodox Church of the Assumption in Port Jefferson. Interment followed at Cedar Hill Cemetery in Port Jefferson. Arrangements entrusted to the care of Branch Funeral Home of Miller Place.