Every five minutes, Jen Mason would pace back and forth from the hospital room to the hallway, breaking down and then gathering herself again.
She didn’t know anything about cancer. The nurses had to pull out a Velcro dummy to demonstrate how a port would save her 8-year-old daughter Ava’s life. It all seemed so surreal to her. After all, it was only months before that she was told the swollen lymph nodes on her daughter’s neck were nothing to worry about.
Even then, it was trip after trip to doctors and specialists who only provided them with “inconclusive results.” One even prescribed her steroids that ultimately hindered her diagnosis and treatment. By the time Ava’s lymph nodes were nearly touching her ears, her frantic mother decided to talk to a friend who recommended UF Health.
After an initial diagnosis of leukemia/lymphoma, Dr. Bill Slayton, the division chief and program director of pediatric hematology/oncology – along with the support and guidance of the Children’s Oncology Group – discovered Ava actually had a rare form of acute leukemia of ambiguous lineage. Before her diagnosis at UF Health, multiple doctors had assured the family they were certain it was not cancer.
“I don’t know where we would be without the UF Health nurses, doctors and P.A.s; they really armed us with information,” Jen said. “Something happens when your child is diagnosed, you become so attached to the doctors. And even with our mistrust of Ava’s past physicians, we trusted UF Health because they saved her life when other doctors didn’t.”
Jen and Ava moved to Gainesville from Clermont to be closer to UF Health, which also meant balancing visits and trips with Ava’s father and two siblings. Three months later, they moved back home and transferred Ava to another facility, but then returned to UF Health—this time relocating the entire family.
Trips to the hospital became routine and after losing her hair for the third time, Ava wondered why it was ever something to worry about.
She responded exceptionally well to treatment, and three years later, she looked forward to ringing a celebratory bell on her last day of chemotherapy (a ritual in the pediatric department). On April 5, she ended up ringing a very old and broken bell with a pen. Afterwards, she decided to replace it with a brand new bell, bearing a plaque with an engraved poem Jen wrote. Ava also added a stool for the “little, little kids” with a gator sticker and the word “warrior.”
“I’m mentally stronger now,” Ava said. “I know not to let things bother me because there are bigger problems, like starving kids and cancer patients.”
Now three months out of treatment, Ava is as healthy and strong – if not stronger – than any other 11 year old. She is back in school for the first time since her treatment, and her friends ask her a lot about cancer. She tells them as much as she can—but truthfully, she would like to be able to help more kids understand.
“Most people hear childhood cancer and think it’s all the same, and it’s not,” Jen said. “It’s almost taboo to talk about because no one wants to think about their child getting cancer.
“As a mom, I encourage other parents to learn about the lack of funding for childhood cancer. Four percent of all funding for cancer goes to childhood cancer—our kids deserve more than that. There are doctors, like Dr. Slayton, who want so badly to make strides with this disease. If they had more, they could do more. And they would do so much more.”