WESTERLY, R.I. — Dorian Murray loves chocolate, meatballs and sausage-and-bacon pizza from Domino’s. He has tons of Legos and more than a thousand Pokémon trading cards.
The 8-year-old’s melted-crayon art hangs on the walls of the home he shares with his mother, Melissa. He adores arts and crafts. He’s also proud of the name he came up with for his cat, Bubbles, because “it’s a cute name. But trust me, he can be mean,” he said.
His favorite superhero is The Flash. And he has two rules he underscores by batting his big, blue eyes that are as vibrant as his personality: “No gum” and “Mom can’t cry.”
“I don’t like the smell of any gum,” Dorian said. “And I tell her she can’t cry. If she starts crying, I will.”
The little boy who’s inspired the hashtag “#DStrong” and amassed support from thousands of people across the world for his wish to become famous, said he lives life “second by second.”
“We never know … my days are based on his days,” Melissa said. “If he wakes up and he’s in a lot of pain, it’s an in-your-face reminder. It’s a great day if he’s in no pain, and I tell myself, ‘This isn’t happening.’ “
Dorian has spent nearly half of his life battling rhabdomyosarcoma, a pediatric cancer that was found in his right calf after he complained of leg pain and was brought to his pediatrician in 2012.
SIDE EFFECTS MEET QUICK WIT
Last month, he learned that the cancer was no longer treatable. He chose to stop treatment and told his parents: “If there’s nothing you can do, I just want to go home.”
He is on pain medication and takes steroids daily to stop inflammation in his spine; if he didn’t, he wouldn’t be able to walk. The steroids have caused him to gain weight, a side effect he combats with a quick wit and sense of humor.
“I’m a beast,” he said Monday, while relaxing on a couch watching movies and eating a snack.
“I curse my fat belly,” he said on another day when he bent over to pick something up, Melissa said.
Melissa, 31, and a single mom – Dorian’s father, Chris, also lives in Westerly – said her main support has been her family and friends here.
“They’re my safe haven,” she said. “I’ve also found a lot of comfort in a lot of cancer patients and the families who are dealing with the same thing. There’s an immediate bond.”
She’s also found a calling: She wants the world to know more about pediatric cancer.
“That’s the struggle, a lot of people don’t know,” Melissa said. “I didn’t know. I would watch St. Jude commercials and tear up, but I never imagined. People are afraid that children go through this, and turn away.”
‘THIS IS REAL’
The American Cancer Society says about 350 new cases of rhabdomyosarcoma occur each year in the United States. Dorian is one of four children in Rhode Island with this type of cancer, Melissa said.
“They say it’s not environmental, but this is why we need more research,” she said. “I want people to know this is real.”
Most rhabdomyosarcomas are diagnosed in children and teens, with more than half of them in children younger than 10 years old, according to the American Cancer Society. The survival rate is about 20 percent.
“It’s just so misunderstood and unknown,” Melissa said. “There have been three pediatric chemotherapies established in the last 20 years. So children are getting chemotherapy for adults. The dosage is lower, but the side effects are horrendous. They wreak havoc.
“They don’t know why this type of cancer happens, or why it’s so aggressive. The type of cancer Dorian has is very responsive to chemotherapy, but it comes back. They haven’t found a way to stop the cancer from coming back.”
Melissa wants to do something about the problem. She has met with lawyers and is drafting papers to start a nonprofit to help raise money for pediatric cancer research. She also is hoping to provide scholarships for two graduating seniors at Westerly High School this school year, and to support other families who are going through what she is.
“That’s the goal,” Melissa said, “to bring more awareness.”
Dorian’s story, his hashtag, and a GoFundMe page that has been set up for him have helped the family’s mission. The GoFundMe page has raised more than $41,000 so far to help pay for his trips to the hospital and for other family expenses.
“He knows he’s inspiring people, and he likes hearing about them,” Melissa said. “He just has a lot of really positive energy.”
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