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“You live every moment to the fullest,” 5-year-old Oklahoma boy still smiling after months of chemo

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OKLAHOMA - Doctors have a saying, when you hear hoof beats, you should look for horses and not zebras.

So, when a little boy appears to have a stubborn ear infection, most pediatricians never assume it’s cancer.

This is a story about a smart pediatrician, a 5-year-old boy, a team of cancer fighters and a family changed forever.

Dr. Subha Mazzone greets little Riley Johnson at Jimmy Everest Center for Cancer for a quick check-up before he receives one of his last chemotherapy infusions.

He’s been doing them for 42 long weeks.

“Show me your muscles” she said as Johnson eagerly pumps up his arm.

Johnson is a superman to his family, but it has nothing to do with his physical strength.

Instead, it’s the fact he’s still smiling after so many months of intense chemo.

In a picture of Johnson and his mom right after his diagnosis, Wendy has long brown hair.

Fast forward to this past spring, and a picture of Wendy shows her with a closely shaved head.

She participated in the St. Baldrick’s head shaving event in solidarity with her little boy.

She is forever thankful for a pediatrician who looked beyond a stubborn ear infection and noticed Johnson had a slight head tilt.

“The ER doctors said he had a mass, and we asked 'What does that mean?' They said 'Well, he has cancer.' Our family immediately just fell to the floor” Wendy said.

The mass was on his brain, and surgery to remove it was not possible.

"It's stage 2 embryonal rhabdomyosarcoma, which is a soft tissue cancer. It literally took me a week or two to say it, let alone spell it," Wendy said.

"It was a really good pick-up by their pediatrician," Mazzone said.

The team at Jimmy Everest Center for Cancer developed a treatment that involved both chemotherapy and proton therapy.

Johnson has permanently lost hearing in one ear and partial movement in his face, but the tumor is gone.

“We are very fortunate to have Jimmy Everest Center here and the treatment that they have here, as well. I look at him, I look at life, I look at love and happiness and strength," Wendy said.

Mazzone agrees and said “The victories that we have in this are giant victories. When you see kids survive, it's amazing."

Johnson fist-bumps a clinic nurse who is taking his height measurement.

The 5-year-old will have some permanent physical challenges ahead, but his future is bright and sparkling with possibility.

“It changes you to the core. You live every moment to the fullest,” his mother said.

'Kids With Courage' is sponsored by the Jimmy Everest Center.