Pediatric rhabdomyosarcoma patient spreads hope

It all started with just a tiny lump on his wrist.

In the summer of 2014, Kobee Cohen, then 8 years old, noticed a tiny growth on the underside of his right wrist. His grandparents, Hadley and Melinda Cohen, weren’t too concerned.

“What young, active boy doesn’t have a bunch of bumps and bruises?” Hadley recalls.

But they started to get a little nervous in January 2015, when Kobee banged his arm on a basketball goal and the swelling didn’t go down.

The Cohens took their grandson to a bone and joint doctor in Beaumont, Texas. He said the lump should be removed and immediately referred Kobee to MD Anderson.

“Whenever you hear that you have to go get checked out for cancer, it isn’t a good thing,” Hadley says. “But hearing the name MD Anderson was actually a relief because we know that they are the best for cancer care.”

Kobee’s rhabdomyosarcoma diagnosis

Kobee was initially referred to Patrick Lin, M.D. During that initial appointment, Dr. Lin felt the lump on his wrist, asked questions, and ordered an X-ray and an MRI.

A biopsy the following week yielded Kobee’s diagnosis: rhabdomyosarcoma, a rare form of cancer that develops from soft tissues that form muscles.

When Kobee asked how he got cancer, Dr. Lin explained, “Your body is like a bunch of dominoes and one of them just happened to fall over in an unexpected way.”

Perseverance during rhabdomyosarcoma treatment

After the diagnosis, Dr. Lin consulted Winston W. Huh, M.D., at MD Anderson Children’s Cancer Hospital.

“We love Dr. Huh,” Hadley says. “He has kids, so he gets it. He really gets down on their level. Plus, he can talk iPads and video games and all the things kids like.”

After injecting Kobee’s tumor with radiated sugar to make sure the rhabdomyosarcoma hadn’t spread, harvesting a lymph node and acquiring a bone marrow sample, his care team came up with his treatment plan.

Kobee started with chemotherapy using vincristine, dactinomycin and cyclophosphamide. After shrinking the tumor, Kobee underwent a seven and a half hour surgery with Dr. Lin and Scott Oates, M.D., to remove the tumor.

After the surgery, Kobee received radiation therapy under the care of Susan McGovern, M.D., Ph.D.  He also received more chemotherapy.

While Kobee experienced a couple of scary fevers, his side effects were pretty minor most days -- a little bit of nausea and some soreness and softness in his arm and wrist bones.

An avid foodie, Kobee also was disappointed when Dr. Huh told him that he couldn’t have sushi during treatment.

But Kobee didn’t let his disappointment hold him back. “He wanted to just get this done,” Hadley says. ”He really increased the amount how of fruits and veggies he ate during his treatment. He had two or three helpings of fruit every day -- and bowls and bowls of edamame.”

Support from many sources

Hadley says the outpouring of support that Kobee received from their community, church and classmates made a huge difference. All the boys in Kobee’s class shaved their heads, and the church started a fundraising account to help with the family’s expenses, such as fuel and food.

He believes that one of the things helped Kobee fight cancer was the fact that he cares for three pets: a guinea pig, a bearded dragon and a Labrador puppy.

“Caring for animals puts you in tune with life,” Hadley says. “It also teaches responsibility and gave Kobee something else to focus on besides cancer.”

Kobee has finished his treatment, but still returns every three months for checkups. He’s also excited that he can finally eat sushi again.

“When they told Kobee he could eat sushi again, he pigged out,” Hadley recalls.

As he tells others dealing with cancer, “Cancer is a miserable thing to have go through, but the experience built character and gave Kobee confidence that if he can beat cancer, he can conquer anything in life.”

Encouraged to give back

Kobee is the latest cancer survivor featured in Jason's Deli's Strike Through Cancer campaign, which raises money to support cancer research at MD Anderson. A photo of Kobee with his grandparents appeared on specially marked water bottles from October through December 2015.

“We felt encouraged to participate and share our story,” Hadley says. “Kobee wanted to let people know that you can get through whatever you face – even if it’s as scary as cancer.”

Learn more about the Jason’s Deli Strike Through Cancer campaign.