Sarcoma Survivor Rocks Life After Amputation

It was July 22, 2006, and Blackpool Lights, the Kansas City indie rock band, was about to take the stage at the Udo Music Festival in Izumi-Ootsu, Japan. The festival was a 2-day extravaganza featuring bands such as KISS, Alice in Chains and The Pretenders. Billy Brimblecom was seated behind the drum kit, ready to rock.

It was a significant date for Billy – just 1 year and a day earlier he learned he would lose his left leg to the bone cancer he had been battling for months. “Being a drummer is like being an athlete,” Billy says. “You really need 4 limbs. And my left foot controlled the high-hat cymbals.”

As the crowd roared, Billy and the drum kit around him, all atop a moveable riser, were wheeled onto the stage. His prosthetic left foot was duct-taped to the high-hat pedal. Nothing would stop Billy Brimblecom from pursuing his dreams.

A sarcoma diagnosis, a team, a plan

Since beating cancer in 2005 and beating the drums in Japan in 2006, Billy, 41, has been busy. He got married, started a family, moved to Nashville, moved back to Kansas City, and found his calling as executive director of the Steps of Faith Foundation, a nonprofit organization that provides prosthetic limbs to amputees who otherwise can’t afford them.

However, in the midst of his treatments for Ewing sarcoma, a rare type of bone cancer, Billy couldn’t imagine the life he has now.

A serious car wreck in 1999 left Billy with broken bones and injuries requiring months of rehabilitation. When his left ankle began to hurt periodically, Billy assumed it was related to the accident.

“Over time, the pain in my ankle and shin became more frequent and severe,” he says. “The original theory was that I had nerve damage from the car accident.” A neurologist, suspecting that the pain was not simply neurological, ordered an ultrasound. “Then he ordered a CT scan. Then he ordered an MRI. Then he sent me to see Dr. Rosenthal,” Billy says.

Howard Rosenthal, MD, an orthopedic surgeon at The University of Kansas Cancer Center who specializes in musculoskeletal cancers, particularly sarcomas, says Ewing sarcoma tends to strike children, teenagers and occasionally young adults. Approximately 500 cases are diagnosed annually. “Billy came in with pain in his left tibia (shin bone) that was caused by a mass we identified as Ewing sarcoma,” Dr. Rosenthal explains. “Our sarcoma care team immediately began to plan his treatment strategy.”

Billy’s team included Mark Myron, MD, medical oncologist with The University of Kansas Cancer Center. Dr. Myron, who has since retired, directed the chemotherapy portion of Billy’s treatment.

“Drs. Rosenthal and Myron are the 2 men who saved my life,” Billy says. “To say I’m indebted to them is a huge understatement.”

While he feels that way now, Billy remembers the day he learned of his treatment plan as a prison sentence. “I knew what my next year was going to look like,” he says. “There would be months of chemotherapy with some serious surgery in the middle of it. But death was just never on my radar.”

Amputation was not on Billy’s radar, either. He knew that this option was reserved for those who needed a lifesaving measure, and he hoped the 13 rounds of aggressive chemotherapy would allow the doctors to save his leg. However, Dr. Rosenthal recalls that Billy’s tumor was large and engulfed nerves, arteries and veins.

“Most of the time we do not do amputations for sarcomas – instead we do what’s known as limb-salvage surgery. But Billy’s tumor was so extensive we elected to do an amputation.”

Losing a leg, but also bone cancer

“My surgery was on August 4, 2005. It’s the day I lost my leg but also lost my cancer,” Billy says. Billy’s room at The University of Kansas Hospital seemed more like a nightclub at times than a hospital room. Friends from across the country flocked to Billy’s side, playing music and partying until the nurses insisted on quiet for their patients.

During quiet moments, however, nurse practitioner Kim Haynes, part of the specialized sarcoma care team, encouraged Billy to mourn the loss of his leg. “She told me that was a healthy and important thing to do,” Billy says. “I don’t really like to be down and melancholy, but I just had no choice. I fought it a lot, but August and September were pretty hard months.”

Although he was grateful to have the tumor completely removed, returning to finish his chemotherapy on crutches 2 weeks after his amputation was the lowest point in Billy’s journey. “I felt utterly defeated,” he admits. “But in retrospect, it wasn’t a defeat at all. In fact, now I can see that time as the beginning of my spiritual journey. I knew all this had to be happening to me for a reason.”

As he neared the end of his 9-month chemotherapy course, Billy’s outlook and circumstances began to improve. Although he says he was “a tough sell on the singles market – I didn’t look so hot,” Billy met his future wife at church just a month after his surgery. Their first date was a week before his final chemotherapy session and only shortly after Billy began wearing the first of several prostheses. The couple married in March 2007, after Blackpool Lights’ 2006 tour.

The purpose behind the pain

The Brimblecoms moved to Nashville in 2009 where Billy sought new opportunities in music, and their son was born in early 2013. A few weeks later, Billy’s prosthetist (a specialist in prosthetics) asked Billy to speak with a new client who had also lost a leg to cancer.

“In talking to this guy who had gone through a similar situation, I could tell he began to have hope, and I was so thankful that I could let him know someone understood and that things would get better,” Billy says.

The encounter was Billy’s first inkling that he wanted to continue helping fellow amputees. “I told my wife and my prosthetist that I wanted to do this – to be a bridge for others to get to a place of hope.” Billy’s desire was serendipitous. The owner of the prosthetics firm, Rob Pittman, had been trying to get the Steps of Faith Foundation off the ground for several years, but couldn’t devote enough time to the nonprofit while running his business. Billy was just the man he was looking for.

“Having insurance, I’m able to get the prosthesis I need to get around, so I really don’t feel handicapped,” Billy says. “But there are a lot of amputees out there who aren’t so lucky, and Steps of Faith helps them get the tools they need. With Steps of Faith, Rob basically tossed me the keys to a car with no engine and told me to get it running.”

Five years later, Steps of Faith is speeding along. Billy and his wife welcomed a daughter in 2015 and returned home to Kansas City, where Billy works to expand Steps of Faith, supported by a former bandmate who serves as operation manager and a volunteer board of directors. The organization raised almost $280,000 in November 2018 at its second annual Thundergong benefit concert.

Specializing in sarcoma care

“There are about 80 different types of sarcoma, but the disease is still quite rare overall,” Dr. Rosenthal says. “Because we have a multidisciplinary team specializing in sarcoma through The University of Kansas Cancer Center Sarcoma Center, I can honestly say that our expertise is unparalleled.”

The team includes a medical oncologist dedicated to sarcoma, a pediatric oncologist, a radiation oncologist, radiologists, pathologists, nurses and nurse practitioners, case managers and social workers and a prosthetist. “There can be 20 to 25 people involved in a patient’s case,” Dr. Rosenthal adds.

Patients often see several providers in a single visit, decreasing time spent traveling to multiple appointments and creating a completely coordinated and individually tailored care plan. Patients may also be eligible to participate in leading-edge National Cancer Institute clinical trials, which are available only at a NCI-designated cancer center like The University of Kansas Cancer Center.

“I am so fortunate to have been somewhere with such a specialized and caring team around me,” Billy says. He notes that in hindsight he can see meaning in his experience, and his message to others is simple: “As long as you’re alive, live. Never give up hope. We’re here because we’re supposed to be here, and even when things don’t make sense, we’re made to be here for each other.”

To learn more about the Steps of Faith Foundation, visit stepsoffaithfoundation.org.

As with all treatments, individual patient results vary. It is important to discuss your treatment options with your healthcare provider.