CHOP Researchers Working Hard to Unlock the Mysteries of Rare Bone Cancer

It was the middle of the night, and 11-year-old Jake Orlick woke up with pain shooting through his right leg.

“It almost felt like a sharp, shooting pain, like somebody punched you,” he said.

Months earlier, Jake had complained to his moms about leg pain that seemed to come and go. The family pediatrician said it was likely growing pains and Jake should take Advil. But there was something different about this night.

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“He woke us up in agony one night in March and we rushed over thinking it was a bone cyst,” his mother Carly Driban said.

Urgent Care doctors took an x-ray and told them to go straight to the Children’s Hospital of Philadelphia. Hours later, they were sitting in front of an oncologist. Jake had Ewing’s Sarcoma, a rare form of bone cancer.

“I was really angry and upset and all I could think about was the future and how it was going to go,” Jake said.

“Since March 17 he has not walked. It’s been tough on him, tough on us,” his mother Cinde Orlick-Driban added.

Jake would need 14 rounds of chemotherapy over the next few months. He started almost immediately.

Meanwhile, just across the street from where he gets treatment, researchers are working hard to unlock the mysteries of Ewing’s Sarcoma.

“For pediatric cancer, there is a tremendous need,” Dr. Patrick Grohar said. “There is less national funding going toward pediatric cancer than the adult counterparts.”

Grohar is the Director of Translational Research at CHOP. He and his team focus mainly on patients who have relapsed, and they might just be on the verge of a breakthrough.

“It’s been known for about 25 years that this particular tumor is dependent on a specific protein target, but it’s considered to be undruggable. We have a clinical trial that’s set to open in the next couple of months that we believe will hit this target for the first time.”

It could be a game-changer for patients.

As for Jake, he has one more round of chemo before his next big challenge. His family is also trying to raise awareness and money as he fights the disease.

“Knowing that your child’s leg is probably going to be amputated, what will come from that, all of that is a hard thing to swallow,” Orlick-Driban said.

But Jake says he knows he will be OK. And he has a message to other kids just like him.

“It might seem like a long journey," he said, "But never give up, and stay strong.”

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