“As a parent, it’s scary. He’s all I have”

By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

Josiah Carel is a natural in front of the camera. His smile is real and uncomplicated. In fact, if he’s not sleeping, he’s smiling, his mom says.

“He’s a happy kid in general,” said Chrissy Carel, a single mom whose world was spun off its axis when Josiah was diagnosed with an inoperable brain tumor at the age of 7.

The low-grade glioma with a BRAF mutation on his brain stem is slow-growing but stubborn, which makes treatment tricky.

Still, in August of 2023, Josiah rang the bell at Riley Hospital for Children after more than a year of chemotherapy.

For about 10 months, he was back to being a kid again, enjoying sports and school and friends. But last summer, scans showed the tumor was growing again.

Josiah, who will celebrate his 10^th birthday Jan. 22, is six months into a new form of chemo that he takes weekly at home.

“For the first time since he restarted treatment, he said he was scared, and it about broke my heart,” his mom said. “But he keeps a smile on his face, and he continues to go to school.”

Josiah, who is under the care of oncologist Dr. Alex Lion at Riley, is a fourth-grader at Boone Meadow Elementary in Whitestown, Indiana.

Outside of school, he likes to ride his bike and go to football, basketball and soccer games. And he is part of Team IMPACT, which matches children facing serious illness with college sports teams. Josiah was paired with the IU Indianapolis Men’s Soccer team, which took him under their wing, inviting him to practices and for kick-abouts on the pitch.

“He really enjoys being around the guys,” Chrissy Carel said. “I never realized there were so many not-for-profit organizations out there to help. I don’t like to ask for help,” she acknowledged. “But I need to get over that.”

In fact, if she had to give one piece of advice to other families facing life-threatening illnesses, she would tell them: “Don’t be afraid to ask for help.”

Aside from his Riley medical team, which she describes as very caring, the social work team at Riley also has been helpful with resources, including making sure Josiah got to spend a week at Camp Riley, hosted every summer at Bradford Woods in Morgan County, Indiana.

“It helps to bond with people who understand what you’re going through,” Carel said.

“As a parent, it’s scary,” she added. “He’s all I have. You feel helpless. If I could take that pain away and put it on me, I would in a heartbeat.”

For now, she finds her strength in her son, who faces each day with a smile on his face.