JACKSONVILLE BEACH, Fla. – A group of bicyclists, family, friends, and people who never even knew Joe DeWaele are raising money in his memory.
Joe DeWaele was 9-years-old when he passed away from acute lymphoblastic leukemia (or ALL). It’s a rare, fast-spreading cancer that is resistant to chemotherapy. Joe and his family battled it for 9 months.
It started in March 2019 when Joe was sent home sick from school, but when he started getting nose bleeds and blisters in his mouth, his mother Carolyn DeWaele took him to the emergency room. Within hours, their lives would be changed forever.
“If you’ve ever been taken to a private room with a doctor you know that typically doesn’t end well. They told us the words that absolutely no parent wants to hear. They said, ‘We’re sorry. It’s leukemia.’ I can tell you right now if my husband was not standing next to me, I would have been on the floor, but my first words to my husband were 'we cannot lose him,” Carolyn said.
DONATE: Support Children’s Cancer Research Fund in honor of Joe DeWaele
The family spent the next 9 months fighting Joe’s cancer. Joe immediately went into chemotherapy treatment at Wolfson Children’s Hospital in Jacksonville. It didn’t work, but the family was far from giving up hope.
“My husband I were of the mentality that if we’re going down, we’re going down swinging,” Carolyn said.
By August, Joe and his mother moved to Philadelphia with the help of the Ronald McDonald Organization so Joe could receive CAR-T cell therapy at Children’s Hospital of Philadelphia.
It’s a cutting edge immunotherapy that attempts to reengineer a patient’s immune systems. It works when doctors harvest T cells (or fighter cells) from the patient. The cells are genetically reprogrammed outside of the body and then put back in.
6 weeks later, doctors had an update for Carolyn.
“He recovered, only to be told that, ‘We’re very sorry. It didn’t work and we were sent home,” she said.
The family was already hot on the heels of another trial drug at Wolfson’s in Jacksonville. After Joe completed its treatment, doctors told Carolyn it didn’t work either.
In October, a clinical trial offered at St. Jude’s Children’s Hospital in Memphis, Tennessee showed promise for Joe, but after a month of treatment, doctor’s told Carolyn she had just days left with her son.
"We went to that scary little room again and the doctor told us there was nothing they could do.
She had such little time left, the family could not even fly home to Jacksonville. That was on a Saturday. By Tuesday, Joe was gone.
“It was November 26 at 10:12 in the morning. I was holding him in my arms when he passed. I had my hand on his heart and it just stopped. And every one of us died a bit that day,” Carolyn said.
3-year-old Joe DeWaele
The loss of Joe left a hole in the hearts and lives of those who loved him, like Ricardo Andreu.
Andreu is one of more than 90 riders who are pledging miles to raise money for Children’s Cancer Research Fund. The nonprofit funds experimental childhood cancer research, like the ones Joe went through. The goal of the nonprofit and every rider under Team #JoeStrong is to find a cure and end childhood cancer.
Andreu who met Joe during his cancer treatment has pledged to ride 399 miles, every mile represents something significant in Joe’s life. It’s something that helps keep Andreu going.
“You start getting tired and you kind of want to quit. They can’t quit. They don’t have an option. They don’t have a chance. So you suck it up and you keep going.”
He and the team of riders, registered under the name Team #Joe Strong together have pledged to ride 25,099 miles in honor of Joe and the race for a cure.
The fundraiser is done under The Great Cycle Challenge.
The Great Cycle Challenge encourages cyclists across the United States to set personal riding goals in September while finding sponsors for each mile. It’s all to fight kids’ cancer. Riders fundraise to save lives and give kids the brighter future they deserve
“It’s an opportunity to bring cyclists like us together to challenge ourselves to see how much money we can raise and how many miles we can ride,” Andreu said.
Joe’s mom said it’s a fitting fundraiser for her son because the last thing he did before he was diagnosed was learn to ride a bike.
The fundraiser lasts through the month of September. You can donate to Andrue’s ride or any other of the 90 riders under Team #JoeStrong here.
100% of the money raised goes to the Childhood Cancer Research Fund. You can donate through the month of September. All donations are doubled on September 9 up to $1.2 million dollars.