Osteosarcoma survivor carves a brand new path ahead

Rebecca Johnston took her place on the gate and seemed down the mountain. Far beneath, the floodlights marked out the course she would journey. In winter, there are solely three hours of daylight on this a part of Finland, north of the Arctic Circle. She checked her helmet yet another time. She had the slowest qualifying time for this occasion, which meant she had the final alternative of gate.

She closed her eyes and pictured herself shredding via the course. She tried to recollect all the recommendation from her coaches and teammates. Sluggish your breath. Concentrate on the horizon.

The contestants lined up on the gate. “Riders, prepared!” the official shouted.

She angled ahead, prepared for launch. Her coronary heart was pounding. The gate dropped and he or she hauled herself ahead with a mighty heave. The race was on. 4 snowboarders plunging down the mountain on a course filled with twists, turns and jumps.

She was final out of the beginning part, however she was catching up. The primary flip went effective. On the second flip, she took the excessive line, which gave her slightly additional acceleration — virtually sufficient to overhaul the subsequent rider. Then she got here to a leap. She hit it OK, however she felt flustered — the opposite rider was too shut. When her board landed, she couldn’t discover her stability.

She fell.

For a second, it felt like all her goals crashed alongside along with her, pulverized within the Arctic snow.

A bump within the knee

A bit of ache and swelling in her left knee. That’s the way it began. Johnston was a highschool volleyball athlete from Hood River, Oregon, heading off to freshman 12 months at Whitman Faculty in Walla Walla, Washington, in the summertime of 2017. She figured the bump was simply the results of overuse. After she confirmed up for pre-season coaching at Whitman, it acquired greater. And the ache acquired worse. She blamed it on intense volleyball exercises.

“Most cancers is a horrible factor to have,” Rebecca Johnston says. “However you’ve acquired to maneuver ahead. You’ve acquired to lean into it. I stored a optimistic outlook. It helped my physique heal. You are taking it at some point at a time. Generally you’re taking it one hour at a time.” She went on a tenting journey in Canada in 2022. (Picture courtesy of Rebecca Johnston)

However within the first week of the semester, she awoke in her dorm room to go to English class and couldn’t straighten her leg.

She talked to her trainers. Noticed a sports activities physician in Walla Walla. The X-ray confirmed a sinister mass in her femur (the lengthy bone in your thigh). Her physician referred her to OHSU Knight Most cancers Institute for a biopsy to substantiate the analysis. It was sobering: osteosarcoma — a sort of bone most cancers.

Osteosarcoma is uncommon. About 1,000 circumstances are recognized within the U.S. yearly, largely in kids, youngsters and younger adults. It kinds when, someplace within the physique, a bone cell goes haywire and begins to multiply uncontrolled. Earlier than lengthy, the dangerous cells clump collectively and type a tumor. The tumor grows contained in the bone, forming a painful lump. Left unchecked, the tumor will destroy the bone and unfold via the physique.

“A most cancers analysis at any age is terrifying,” says her oncologist, Lara Davis, M.D., assistant professor of drugs on the Oregon Well being & Science College Faculty of Drugs and director of the sarcoma program at OHSU. “However in somebody Rebecca’s age, the stakes are additional excessive. Even when caught early, osteosarcoma requires almost a 12 months of intense remedy — time spent within the hospital as a substitute of off in school.”

Johnston took a medical depart from Whitman and moved again in along with her household. Davis, her oncologist, began her on a tricky regime of chemotherapy designed to cease the most cancers from rising and spreading. She suffered from nausea, weak spot, mind fog and exhaustion. She misplaced some hair and shaved her head. After a number of months, she was prepared for the subsequent section: surgical procedure.

The tumor had penetrated deep into Johnston’s femur, simply above the knee. Her surgeon, James Hayden, M.D., Ph.D., affiliate professor of orthopedics and rehabilitation within the OHSU Faculty of Drugs, must take away the decrease third of it. Nonetheless, the staff may exchange the lacking bone with a size of titanium that might hook up with her knee, a process often known as limb-salvage surgical procedure.

Johnston may hardly wait. “I actually favored my staff,” she says. “Dr. Davis is likely one of the smartest and most succesful docs I’ve ever met. She’s an incredible particular person. We acquired to know one another so effectively. Similar with Dr. Hayden. I acquired one of the best remedy attainable. They have been nice at supporting me. I used to be able to get this tumor out and get on with my life.”

However it wouldn’t be so easy.

An enormous step

Restoration from the surgical procedure was lengthy and troublesome. Her leg couldn’t bear any weight in any respect for six weeks. She used a walker, then crutches. And she or he was nonetheless doing chemo. She binge-watched The Workplace, then Breaking Unhealthy, then The Workplace once more. However the ache by no means actually went away. “I actually struggled,” she remembers. Six months after the surgical procedure, she nonetheless couldn’t bend her knee.

Rebecca Johnston competed within the FIS Parasnowboard World Championship winter video games in La Molina, Spain, in 2023, the place she positioned fourth in snowboardcross and fourth in dual-banked slalom. She additionally represented Crew USA within the staff model of these occasions. (Picture courtesy of Rebecca Johnston)

After a 12 months, she had a process often known as revision surgical procedure to take away scar tissue that had crept into the joint. Nonetheless, it got here again three months later.

In 2018, after she completed chemo, she linked with the Sam Day Basis, a Portland nonprofit devoted to serving to younger folks with most cancers and bodily challenges. The inspiration paid for her to go to a sports activities heart in San Diego, California, to satisfy different volleyball gamers with bodily challenges and play sitting volleyball with the Challenged Athletes Basis.

She went again to varsity at Whitman and acquired a summer season job at a lodge within the Grand Tetons in Wyoming as a concierge on the actions desk, serving to company arrange horseback rides and whitewater rafting journeys. The job ought to have been an outdoorswoman’s dream. However she wasn’t residing it. “I felt so restricted by my knee,” she says. “I needed a lot to be sturdy, however I couldn’t do it.”

That summer season she additionally went to coaching camps with the USA Sitting Volleyball Crew. Speaking with different gamers, she started to consider a step she had by no means thought-about: amputation.

Johnston requested her surgeon, Hayden, about her decisions. He advised her that they may strive eradicating the scar tissue once more, however there was no assure it might assist. Amputation was undoubtedly an possibility, he mentioned, if she needed to pursue it.

Johnston didn’t hurry the choice. She did her personal analysis and talked to different folks about their bodily challenges. She tried to grasp the capabilities and limitations of a prosthetic leg. She continued to do bodily remedy and rehabilitation. However one thing turned more and more clear: “I used to be by no means going to run on that knee,” she says. “I used to be by no means going to leap on it.”

Amputation would free her from the constraints of her knee. However it might additionally imply shedding every thing beneath it: the calf, the shin, the ankle and the foot — perpetually.

In Could 2020, she determined it was time to make the leap. There was no going again. Hayden carried out the surgical procedure, leaving her with a residual limb composed of the highest two-thirds of her femur. That summer season, she acquired fitted for a socket and tried out her first prosthetic leg.

‘Dude, you are able to do this.’

The fundamental sort of prosthetic leg incorporates a “door hinge,” or mechanical knee. There’s no resistance within the joint. Johnston may use it for flat surfaces, however not for stairs or steep paths. That fall, she acquired a temp job at an pressing care clinic in Walla Walla doing COVID-19 testing. With effort, she realized methods to stroll from the curb to the clinic.

Six months later, she acquired an improve: a microprocessor knee. The sort of knee detects an irregular step and stiffens the joint to forestall a fall, a know-how often known as stumble restoration. The knee got here with a hydraulic ankle that helps regular her gait. “If I’m sporting denims, folks don’t even know I’ve it,” she says.

Upstairs, downstairs, indoors and out, the brand new leg was significantly better fitted to her on a regular basis actions as a biology main at Whitman. However she needed to get again to sports activities. Because of the Transfer For Jenn Basis, she was capable of get a prosthetic knee specifically designed for athletes. “That was an incredible reward,” she says.

That spring, she took snowboarding classes at Timberline Lodge on Mount Hood. “I had a blast,” she says. “It was unusual and bizarre to belief my leg.” She posted a photograph of herself on Instagram, standing on a snowboard along with her prosthetic leg.

To her shock, just a few days later she acquired a name from Noah Elliott, a snowboarder who additionally misplaced a leg to osteosarcoma and who now competes with the U.S. Paralympic staff.

“Dude, you are able to do this,” he advised her.

That summer season she did an internship at a most cancers analysis lab on the Mayo Clinic in Rochester, Minnesota. The analysis fascinated her, however she discovered her ideas returning to Elliott’s name.

Within the fall, she met up with Elliott and the U.S. staff at Mount Hood for a actuality test. May she actually compete as a para snowboarder? “I used to be getting higher on daily basis,” she says. “I actually needed to be a part of this. However I knew I had an extended solution to go.”

All via her senior 12 months at Whitman, in between biology lab and chemistry checks, she went snowboarding at any time when she may snatch a spare second. After commencement, she moved again to reside along with her dad and mom in Hood River and labored at a vineyard, saving up for coaching and airfare. She educated in Utah. She raced in Canada. She educated in Utah once more. The following step: competing within the Europa Cup in Pyha, Finland. If that went effectively, she may qualify for the World Cup.

Down, however not out

In the mean time, it wasn’t going effectively. Johnston was mendacity spreadeagled within the snow. However she remembered one thing her coach as soon as mentioned: “There’s plenty of race left to go. A lot can occur in 90 seconds.”

Rebecca Johnston earned two bronze medals for Crew USA within the staff occasions on the FIS Parasnowboard World Championship winter video games in La Molina, Spain, in 2023. (Picture courtesy of Rebecca Johnston)

She popped again on her toes and acquired on the board. She was lifeless final — however she was nonetheless within the race. “I used to be decided to maintain going,” she says.

Build up pace, flying down the course, she may see the opposite riders in entrance of her. This course gave athletes a alternative: a small leap or a giant leap.

The opposite riders made a conservative alternative and took the small leap: it was safer however slower. Johnston knew in a split-second what she would do. “I gotta go massive,” she thought.

Now was the time. Time for redemption. Time for journey. Time to go all in.

She accelerated down the slope and hit the leap straight on. She soared into house via the lengthy, aching seconds of flight, the moments stretching out like wisps of smoke borne aloft. Then the mountain rose to satisfy her like a stable wall of snow.

She flexed her knees and nailed the touchdown.

The large leap gave her a lot momentum that she blew previous two different riders to complete second general.

“Finland was the turning level,” she says. “That’s after I knew I may do that.”

Her race in Finland helped Johnston qualify for the FIS Parasnowboard World Championship winter video games in La Molina, Spain, in March 2023. Competing with world-class para-athletes and gold-medalists, she positioned fourth in snowboardcross and fourth in dual-banked slalom. She additionally represented Crew USA within the staff model of these occasions, profitable two bronze medals.

“I’m so impressed by Rebecca,” says Davis, her oncologist. “Even not contemplating the challenges she’s confronted from this bleeping most cancers, she’s completed superior issues. And she or he’s at all times with a smile!”

Since then, Johnston has raced everywhere in the world. She lives in Salt Lake Metropolis and works for Pit Viper, a sun shades and attire firm. She’s coaching for the 2026 Winter Paralympics in Milan, Italy. She’s additionally planning to go to medical faculty.

“Most cancers is a horrible factor to have,” she says. “It sucks. However you’ve acquired to maneuver ahead. You’ve acquired to lean into it. I stored a optimistic outlook. It helped my physique heal. You are taking it at some point at a time. Generally you’re taking it one hour at a time.”

What insights would she supply to different younger folks with most cancers?

“Whenever you’re younger, every week seems like perpetually,” she says. “You need to get on together with your life. However it’s important to settle for that proper now, your job is to get higher. To not be in class, to not work, however to heal. Most cancers will at all times be part of you. However at some point you’ll look again on this and be grateful you stored on combating.”