Friends and family rally for ‘Baby Joey,’ toddler battling leukemia

Joey’s mother knew something was wrong when her 17-month-old son stopped walking.

An early walker, baby Joey had previously been full of energy. He liked to run wherever he could, chasing his sister Baleigh around the house.

“But all of the sudden, he started limping around and holding onto furniture,” said Jaymie O’Brien, Joey’s mom. “Every time I changed his diaper, he would scream. He slept for a whole day one time. He wasn’t acting like my son.”

Joey was in and out of the pediatrician’s office every day for the entire month of November. But his doctors were puzzled. Allergy tests and bloodwork all came back with no indication of a problem.

It was not until a month later, in the Stony Brook University Hospital emergency room, that the word “cancer” was first mentioned.

“I was hysterical,” said O’Brien, who is 26. “I started Googling everything I could about it on my phone in the ER. I called my mom. I couldn’t stop crying.”

On December 30, at 18 months old, Joey was diagnosed with acute myeloid leukemia. AML is a cancer of the blood and bone marrow, and it is the more aggressive of the two most common types of acute leukemia.

Joey began his first round of chemotherapy on New Year’s Eve. “We went into 2015 with a bag of chemo hanging,” said O’Brien wryly.

He was in the hospital for most of January, home for five days, and then admitted again at the beginning of February for his second round of chemo. Although each round is only 10 days long, Joey needs to remain in the hospital for recovery. “It wipes out your entire system,” O’Brien said.

Five nights a week, O’Brien sleeps on a cot beside Joey’s crib in his hospital room. Joey’s father, Rob Diorio, works most of the week, but on his two nights off, he trades shifts with O’Brien so that she can go home to be with their two-year-old daughter, Baleigh.

“It’s been really hard on Baleigh,” O’Brien said. “She never wants me to leave when I’m home. I’ve been with her every single day since the day she was born, and now I only get to see her a couple days a week. It’s very hard.”

Baleigh also misses her little brother, who is only a year and 21 days younger than she is. “She’s always asking, ‘Is Joey better? Can he come home now?’ And I always have to tell her, ‘Not yet.’”

The treatment period for AML is about a year and a half long. Joey will need to undergo either one or two more rounds of chemotherapy, depending on the results of his latest biopsy. He will then have a bone marrow transplant done at Cohen Children’s Medical Center in Nassau County. Baleigh, who will be three years old in June, will be Joey’s donor.

“She’ll have two weeks of recovery,” O’Brien said. “Joey will have to be there for six weeks. And then, hopefully, that will be the end of it.”

O’Brien and Diorio both graduated from William Floyd High School. They now live in Mastic Beach with their two children. O’Brien’s father, James O’Brien, works at the Riverhead Moose Lodge, where a fundraiser was held for Joey on January 31.

Another fundraiser will be held March 29 at the Knights of Columbus in Center Moriches. It costs $10, and includes food and entertainment. There will also be a Chinese auction and a raffle.

Moe’s Southwest Grill on Route 58 will also be holding a fundraiser all day March 23 and 24. A portion of purchases made at Moe’s during these two days with the presentation of this flyer will be donated to Joey and his family. Riverhead Boy Scout Troop #242 will be handing out the flyers that weekend at local stores.

“Unfortunately, there are costs that insurance doesn’t cover,” O’Brien said. “I’m lucky to have such supportive family and friends.”

A GoFundMe page has also been set up for Joey. As of publication, $16,310 of the $30,000 goal had been donated.

“It’s been really tough,” O’Brien said. “The days mesh together. We’ve been doing this since November. When I first found out, I was obviously upset, but I haven’t had time to break down about it. I’ve been in full mom mode.”

Joey, meanwhile, is cheerful as ever. “He’s the happiest little boy in the world,” O’Brien said. “He’s got the greatest spirit. He’s such a fighter. He Skypes with his sister, he loves his nurses, and this last round of chemo didn’t make him very sick.

“I know he’s going to be okay,” she said. “I just know it.”