Grayson’s Story of Strength, Science and Survival in the Face of Rare Childhood Leukemia

Janelle Irwin knew there was something wrong with her son, Grayson, when he was only 11 months old. The doctors in Tallahassee said his high fever would pass, but when additional symptoms appeared, she knew something more was going on.

Janelle continued to take Grayson to the doctor. It wasn’t until the fourth visit in three weeks that she got an answer. Blood work revealed that Grayson had T-cell acute lymphoblastic leukemia, or ALL. This fast-growing cancer attacks white blood cells called lymphocytes and prevents the production of healthy blood cells.

Grayson’s pediatrician referred the family to UF Health Shands Children’s Hospital, where they met with a care team that talked them through everything as they performed multiple tests.

“Our nursing staff was ready for Grayson,” said William Slayton, MD, his primary physician and a UF Health pediatric hematologist. “They were expecting that the family would arrive by ambulance, but his dad brought him by car. It was a shocking experience, especially with Grayson vomiting blood during the drive. When Grayson’s family arrived, we immediately started the process of stabilizing him and testing to make a diagnosis.”

Despite the scary whirlwind of uncertainty, the UF Health team comforted the Irwin family.

“There was this element of just knowing we were in the right place, which was a beautiful comfort at that time,” Janelle said.

Grayson was an outlier, and standard treatment for leukemia would likely not work, UF Health experts advised. The leukemia was found in Grayson’s central nervous system.

When it became clear that the best chance they had at treating his cancer was a clinical trial, the countdown began. Grayson’s parents had just 12 hours to decide what to do.

“Grayson’s leukemia was unusual. Kids less than a year of age have leukemia that tends to be harder to treat, but it’s usually the B-cell type. Not only was Grayson under a year of age, but he also had the T-cell type,” Dr. Slayton said.

“The chemotherapy plan at the time for infants was actually very good therapy for someone like him, and we had an open protocol for him,” Dr. Slayton added. “So, we explained this option to the family and, with their permission, enrolled him in a trial. He responded beautifully to the treatment.”

It was not an easy choice, but Grayson’s care team was open and honest. In rare forms of cancer, like ALL in an infant patient, there are many treatment options. However, there is no strong data to support one approach over another. By participating in the trial, Grayson’s chemotherapy and care would be similar to those of hundreds of other toddlers, allowing researchers to measure how their bodies respond.

His participation helped establish a standardized protocol and provided a clearer sense of the best way to treat this form of leukemia in infants. Through clinical trials, including those supported by Stop Children’s Cancer, cures have improved in this form of leukemia — from 20% when Grayson was treated to 80% today.

It was clear to the Irwins that this trial was Grayson’s best shot, so they took it. Grayson spent two years in treatment until he turned 3. For the first six months, Grayson was cared for as a patient at UF Health Shands Children’s Hospital. Gainesville became the Irwin family’s second home.

This journey wasn’t easy for the family, but it shaped who they are today. Janelle missed many of her daughter Katelyn’s early childhood milestones because of Grayson’s cancer treatment. However, the experience ultimately brought the family closer together.

“It made us who we are,” Janelle said. “It made us so much stronger. We’re very grateful for the experience.”

Inspired by her family’s battle, Janelle co-founded the Hang Tough Foundation in Tallahassee to serve families affected by chronic illness. And at 8 years old, Katelyn launched The Ripple Project to raise money for pediatric cancer research. To date, she has raised over $130,000.

This past summer, when there was a chance that Grayson would relapse, the family stayed close by his side.

“We do this together as a family,” his sister said as they sat by his bedside waiting for news.

Thankfully, the tests came back negative.

The 10-year milestone has been a cause for celebration for the whole family, especially for Grayson.

“It was great. I mean, five years usually means that it’s totally gone, but 10 years means it’s, like, gone, gone,” Grayson said. “So, it just feels great to know that I’ll be fine, hopefully, from now on.”

Today, the 13-year-old attends school, enjoys spending time with friends and family and loves playing basketball. He dreams of playing for the Florida Gators basketball team one day. Last year, Grayson joined the Gators men’s basketball team on its championship visit to the White House.

Grayson is now thriving in ways that Janelle had only dreamed of. Most people who meet Grayson now have no idea he is a cancer survivor, she said.

“He’s this little guy on the basketball court, taking on these 200-pound guys like he has no fear in the world.”

Grayson is grateful for his path to healing and where it has led him today. He tells children going through cancer treatment now to “keep fighting and never give up.”