Stories of progress, inspiration, and information in overcoming osteosarcoma.

Inspiring Audiences Everywhere: Joel Soukup

He couldn’t relate to the pamphlets the hospital gave him on amputation, so Joel and his mom wrote their own book on his experience.

The treatment protocol for osteosarcoma may be standardized, but no two families’ experience with the horrific disease are the same. Some stories end in joy; others in tragedy. All are profound. In our Inspiring Audiences Everywhere series, we’re sharing stories of families who decided to participate in books, movies, TV shows and more to get the word out about osteosarcoma. Here is Joel Soukup’s story.

There was very little on osteosarcoma in the media when Joel Soukup was diagnosed as a 16-year-old in 2003 — and even less on limb amputation. When he got the news that he would need to have his right leg, hip, and pelvis amputated, the only information he had to go on was a pamphlet from Mayo Clinic with black-and-white anatomical diagrams comparing before amputation and after.

“I remember looking at the pamphlet and thinking it must have been so outdated because of the photos — that, surely, they had better treatments now,” Joel says. “It was traumatizing.”

Seeking Out Survivors

Without any positive stories to read, Joel and his family had to seek out survivors in person.

“Mayo put us in touch with a patient who’d had the same surgery years before Joel,” says Joel’s mom, Kathy Soukup. “We went to visit him and met with him. I remember when we got there, he was up shoveling his roof.”

Meeting with a fellow osteosarcoma survivor gave Joel and Kathy the hope they needed to move forward. It also inspired Kathy to write a book about her family’s experience with the disease and Joel’s amputation. Fortunately, Kathy had copious notes.

“When Joel was first diagnosed, we knew nothing at all about what was happening. So I started to write everything down because I was just trying to remember what word a doctor said, or what we were going to have to do next, that kind of thing,” Kathy says. “Some days, the only thing I’d write was ‘bad day’ or ‘good day.’”

Joel had been documenting his experience as well.

“The social worker who got assigned to us said that it would be helpful to journal, so that’s what I started doing,” he says. “I hadn’t ever really done that before, but I took her up on the idea, and it was very helpful. So that’s my contribution to the book, my journals.”

Waiting to Publish

Kathy insisted on waiting until Joel’s story had a happy ending to publish the book.

“I did not want to write the book before 10 years were up because with that type of cancer, we were told that if you survive 10 years, you have a pretty good future looking forward,” Kathy says. “As it turned out, Joel had a recurrence at about the four-and-a-half-year mark.”

Fortunately, Joel came through the recurrence, another surgery and more chemo and hasn’t had any more scares. Kathy and Joel released their book, Standing Tall: On One Leg, in 2013.

“Our purpose was to help people who had been given a diagnosis of osteosarcoma or really any kind of a cancer and how to keep your senses about it,” Kathy says. “It’s such an overwhelming diagnosis and disease. If we could help someone navigate that diagnosis with our information that we already had, that was our purpose of writing the book.”