Two-year-old Devyn Aguilar skips across her back yard without a care in the world, her black curls bouncing with every step. Those curls are new to her.
“I think one of the hardest times was seeing her hair fall out after the second round of chemo,” mom Joanna Aguilar said. “She would lay her head on the pillow, and she was just starting to get her hair in, and then it came out. Her dad has straight hair, so it was coming like his, but now it’s (curly) like mine.”
Devyn, who will turn three next month, is a two-time childhood cancer survivor. She’s had to fight for it, but that’s what she is—a fighter, from the day she came into this world. When she was born, Devyn weighed one pound.
“I was six months pregnant, and they had to rush me into the operating room,” Joanna said.
Devyn spent a few months in the NICU, and then went through a year of therapy and surgeries. On her first birthday, the family had a big celebration and recognized all she had overcome. But their sigh of relief only lasted about a week.
“It just so happened to be the same day as her one-year checkup with the pediatrician,” Joanna said. “She woke up that morning with a swollen right eye. When I took her to the pediatrician, they weren’t sure what it was, either.”
The pediatrician sent them to an ophthalmologist, who planned to watch it and check on it again in three months. “The very next day, when she woke up, her pupils were two different sizes, and the eye was a lot more droopy at that point,” Joanna said.
Joanna and her husband Denys are both nurses, and they knew something was very wrong. Their instincts were correct: an MRI showed Devyn had stage 4 neuroblastoma, a rare cancer diagnosed in about 800 children in the United States each year. Devyn started chemotherapy right away.
“We pretty much lived at the hospital,” Joanna said. “Every 21 days was a round at the hospital. Some days we stayed three days, some days we’d stay weeks. There was a point where she got a pretty bad infection while she was on chemo, which can be very dangerous for her. We were in the hospital for almost a month straight.”
During chemo, Devyn wasn’t able to play with other children because of her diminished immune system.
“We couldn’t go out with other kids to play,” Joanna said. “We couldn’t go to the water park to play …the playground. So, when I found this foundation, it was a blessing, because I was like, ‘This is what she needs.’” The foundation she refers to is Roc Solid, a nonprofit in Virginia founded by childhood cancer survivor Eric Newman. Roc Solid has built thousands of backyard playsets for children fighting cancer, giving them a safe space to escape the realities of their illnesses and do what children are supposed to do: play.
The organization is gifting and building nearly 80 playsets and playhouses to families of pediatric cancer patients across the country in just three days in September, which is Childhood Cancer Awareness Month.
Devyn’s family is one of those recipients. So, on this hot September morning, 25 volunteers from Amazon work beside volunteers from Roc Solid to build a place for Devyn and her sister to climb, slide, and swing any time they want in their St. Cloud backyard.
“They always told us, from the beginning, even when she was preemie and then when we started chemo, they said, ‘You know, she’s going to be delayed. She’s going to not walk. She’s not going to be able to do things like the other kids,’ to prepare us,” Joanna said. “And so, obviously, we put a lot of work in it, but she’s right on track.”
After nine months of chemo and six more months of oral medication, Devyn’s cancer is in remission.
“We’re so proud of her,” Joanna said. “We’re happy. We’re still trying to pick up the pieces, but we’re very happy now, and thankful for all of this.”
