Life After Osteosarcoma: Scott Odom’s Journey Beyond Cancer

A Day He Will Never Forget

Scott was active as a child, and he played various sports including baseball and basketball. He remembers exactly when his life changed: the first day of his freshman year of high school, second period, when he was pulled out of class and found out he had osteosarcoma.

As part of his cancer treatment, he needed an above-the-knee amputation, which would give him the best opportunity to return to sports. But he had hoped to play sports in college, and possibly even professionally, so he had to adjust his expectations. “I knew that was not a reality anymore because of my leg,” he says.

Attending Camp Sanguinity with other kids facing cancer, including Kaleb Collins, was one of the things that helped him come to terms with the way cancer changed his life.

Finding His Path

Scott was not sure what he wanted to do after he graduated from high school, so he took a year off, then enrolled in community college. “Really, all I wanted to do was play sports,” he says. Wheelchair basketball was an option, but it was not for him. “I had learned how to walk and run with my prosthesis. Why would I just sit in a wheelchair when I could do all that now?”

He started building a basketball organization for amputees, traveling from Texas to California to meet other players. He transferred to the University of Phoenix so he could take online classes that worked better with his schedule.

In the process, he found his career niche. “I was meeting kids and adults with disabilities or cancer, and I got my foot into the prosthetic world as a patient advocate,” he says. He transitioned the basketball organization into a nonprofit that raises money for kids with cancer and limb loss. “I am still doing something I love to do, and I have this career where I am helping people. I feel like this is where I am supposed to be,” he says.

The Financial Impact

As a teenager fighting cancer, Scott’s parents did not tell him how much his cancer treatment cost. Over time, he found out that his cancer treatment left his father, a self-employed auto mechanic, and his mother, a stay-at-home mom, with more than $1 million in medical debt.

As an adult, he has had to face his own financial challenges due to his cancer treatment. Top-quality prosthetic legs are expensive, because they include microprocessors that help make them safer and better for walking and standing. Scott estimates that a complete above-the-knee prosthetic, with knee, socket, and foot, retails between $40,000 and $80,000. Standard versions without high-end computer chips can cost $15,000 to $40,000.

Every two to three years he needs a new prosthesis. “That is a lifelong thing. And I am always going to need new sockets and new legs, liners, and supplies,” he says. “Insurance only pays part, and I have to pay the deductible.”

Growing a Family

Scott knew his treatment might have affected his fertility, but as a teenager and young adult, that was not top of mind. As he got older, though, he met a woman he wanted to marry, and they talked about the ramifications. “She was fine with it,” he says. “She has been really supportive. She said, ‘There is another way.’”

The couple tried embryo adoption, but a miscarriage and three failed attempts left them emotionally spent. They decided that method was not meant to be. They considered adoption, but it was very expensive. So, they decided to become foster parents. “We thought maybe we would have a home where children came through,” Scott says.

They hoped a foster placement would lead to adoption, though they expected to have five to seven kids come through their house before that could happen. “We did not know if we could handle it emotionally, with the attachment,” Scott says.

Their first placement was a 2-year-old girl. They expected she would stay for a couple of months. But it turned out, they were able to adopt her, and she has been a part of their family ever since.

Facing Ongoing Health Concerns

Scott was told that one of the medications he needed for cancer treatment could lead to a heart condition decades later. He takes heart medication to help prevent it, and he goes to the University of Texas Southwestern Medical Center every year or two for echocardiograms and MRIs to evaluate his heart health. “The heart issues are always in the back of my mind. It is mostly preventative right now, but to me, it feels like a ticking time bomb,” he says.

He also says that surviving cancer has left an emotional impact. “I think about death daily. I have been to a few therapists, but I cannot seem to not think about that,” he says. “I get really emotional, especially around the holidays, because when I was going through treatment, I did not think I would see Christmas again.”

Knowing children who did not survive cancer, he worries about his daughter and the children he meets through his work. “I know something can happen at any moment, because it did to me,” he says.

Still, he recognizes how fortunate he was to survive osteosarcoma. “The older I get, the more I know how blessed I am to live as long as I have.”

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