Sarah Conway, 13, stood in front of her full-length mirror in her Benton Harbor bedroom and stared at her bare legs.
Her right calf looked much bigger than her left. She felt sure of it.
“My family had just returned from vacation in Ohio,” Conway, now 18, recalled. “I remember it well, back in August of 2016. My right calf didn’t just look bigger, it felt firmer.”
When she pointed out to her parents what she saw in the mirror, her parents took her to Spectrum Health Lakeland Niles Hospital.
Something definitely seemed wrong. And it was. Very wrong.
After a series of tests, X-rays, ultrasounds and MRIs, doctors diagnosed Conway with osteosarcoma in her right fibula, an aggressive form of bone cancer.
“At age 13, all is bright colors and sunshine,” Conway said. “So hearing that I had cancer was a real shock.”
Sharon Smith, MD, a pediatric hematologist and oncologist with Spectrum Health, oversees Conway’s medical care.
“Scans showed us what appeared to be osteosarcoma,” Dr. Smith said. “Osteosarcoma is a particularly aggressive bone cancer. It starts in the bones, usually the longer bones such as the femur and tibia, and spreads from there.
“We see it in children or young adults, more commonly children who are African American and taller in stature, but it is a rare condition with fewer than 400 children diagnosed in the U.S. each year.”
Dr. Smith did a work up to see if the tumor had spread into other bones or Conway’s lungs. Tests showed that it had not. The tumor had not metastasized.
“We started Sarah immediately on a round of chemotherapy,” Dr. Smith said. “But even with chemo, that’s only for local control. We had to talk about amputation.”
Conway took a breath as she recalled getting the news—an amputation.
“I was given a couple of options,” she said. “We talked about amputation above the knee, that was option one.”
“The option I would have preferred is called the limb salvage procedure, but that probably wouldn’t have worked for Sarah,” Dr. Smith said. “Her nerves and blood vessels were too involved in the tumor.”
Conway considered the possibilities.
“That could have killed some of my nerves and I might have just ended up with a basically dead foot,” Conway said. “My parents took me to three different places for more opinions, but everyone had the same recommendation. I needed the amputation.”
Navigating the world
Doctors scheduled Conway for amputation in November 2017 at Spectrum Health Helen DeVos Children’s Hospital.
She would take a short break from chemotherapy while her amputation healed, but then resume the treatments to ensure any cancer cells that might be left in her body would be destroyed.
“Sarah was brave,” Dr. Smith said. “She recognized that this was something she had to do. She listened to the experts.”
Going into surgery, Conway said she felt emotionally numb. How to fully comprehend the loss of a limb?
“I understood this was to save my life,” she said. “And I understood amputation was far less risky than trying to save my leg.”
When Conway opened her eyes in the recovery room after surgery, she saw a circle of loving faces. Her family surrounded her.
“I have one younger sister and three older brothers, all have been supportive,” Conway said. “My brothers got very emotional about it, they didn’t know how to handle it at first. And so did my parents, but they’ve all been strong for me.”
When medication from the surgery wore off, Conway felt pain. But as the swelling of her leg at the amputation site went down, she began physical therapy.
At first, she had to learn to balance with newly shifted weight.
She learned how to get out of bed, how to use a wheelchair and crutches, how to use the bathroom for hygiene.
At home, Conway’s parents made some changes to accommodate her needs.
They moved her bedroom from a lower floor to the main floor. The table and chairs in the dining room were rearranged to make room for her wheelchair. The shower now had a comfortable chair in it.
At school, Conway faced the curious stares of her eighth-grade classmates.
“They didn’t ask,” she said. “They stared. I ignored it as much as I could. By ninth grade it got better—students were more mature and accepting. But if I could tell people anything, it would be that it’s OK to ask questions. Don’t just stare, ask.”
Talking to others about her experience, especially others who had or will undergo amputation, is something Conway greets.
“I was fitted with a prosthetic about two, three months after my surgery,” she said. “By now, slipping it on and off has become second nature. It’s a part of me.”
Conway resumed her chemotherapy at Ethie Haworth Children’s Cancer Center at Helen DeVos Children’s Hospital. She lost her beautiful, dark brown locks of which she had been so proud.
“I dreaded the chemo, but the nurses at Helen DeVos Children’s Hospital made it easier,” she said. “They became like my second family. And the hospital my second home.”
And as time passed, life blossomed.
Upon graduating high school, Conway’s dark, curly hair had grown in again.
In August 2021, she enrolled in the nursing program at Grand Valley State University at Allendale.
“It’s my freshman year and I’m studying biology, chemistry, algebra and labs in my first semester,” she said, smiling. “I want to major in pediatric oncology. I want to be the one in scrubs now.”