Choosing the Challenge

Caitlynne McGaff

By Joshua Feblowitz

It all began with a troublesome pain near Caitlynne McGaff’s right knee. At the time, it didn’t seem like there was anything to worry about: An occasional bruise or bump was typical for the energetic 7-year-old, who was involved in a wide range of athletic activities, including gymnastics, ice-skating, basketball and soccer. The pain in her leg, her parents thought, was no doubt the result of this active lifestyle, a minor injury that would go away on its own. Yet week after week, Caitlynne’s leg continued to bother her.

It was only by chance during a routine check-up that the issue came to the attention of the family’s doctor. What followed was a battery of medical tests to find the source of her persistent pain. Day after day, Caitlynne’s right leg was poked, prodded and scanned by an array of medical specialists. “I was definitely scared,” recalls Caitlynne. “I was going from test to hospital to nurse to doctor, being asked questions.” After a whirlwind of medical detective work, her doctors shared the unthinkable diagnosis: cancer.

Caitlynne had a bone tumor known as an osteosarcoma growing just above her knee, the most common location for this aggressive tumor. The eighth most common cancer in children, osteosarcoma is still a rarity, affecting only about 600 children per year in the United States. To have a chance at a cure, Caitlynne would need intensive treatment, including both chemotherapy and surgery.

There was hardly any time to process this news. Chemotherapy started right away, a jarring new reality that put a stop to her many activities. The treatment made her hair fall out and left her listless and constantly nauseous. Yet through it all Caitlynne stayed strong with the help of her family who did whatever they could to make the long hospital stay more bearable. “My dad started doing what he called a ‘brave bank,'” she says with a smile. “Every time someone said, ‘you’re so brave’ he had to give me a quarter. It was little things like that helped relieve my fear and stress.”

Weeks into Caitlynne’s chemotherapy regimen discussions began about the second phase of treatment. The chemotherapy could only do so much; the tumor, as well as the bone and tissue around it, would have to be removed to give Caitlynne the best shot at a cure. Children’s Hospital Boston orthopedic surgeon Mark Gebhardt, MD, explained the options to the family: Caitlynne could have an allograft (a donated bone), an implant made of metal and plastic, or a type of partial amputation known as a rotationplasty.

A rotationplasty is a surgical procedure that is both elegantly simple and medically unusual. “You’re basically amputating the part with the tumor except for the nerves,” explains Gebhardt. “Then you take the upper end of the shinbone and you attach it to the thigh bone. In the process of doing that, you rotate it 180 degrees so the ankle becomes adjacent to the opposite knee.” The result is a new “knee” formed by the rotated ankle and foot.

Mark Gebardt,MD

Though dramatic, the surgery offers better mobility than a traditional amputation, allowing children to still have a functional “knee” made up of what used to be their ankle. And unlike a typical amputation, patients don’t experience any phantom pain, the aches and other sensations that amputees sometimes feel from the limb that’s no longer there. It also offers advantages over an allograft or implant, Gebhardt explains, which would not only limit Caitlynne’s activities, but also require more surgery as her bones grew. “If you use a metal prosthesis or an allograft,” he says, “you can’t do as many things athletically because they can loosen or break.”

However, a rotationplasty also comes with one major disadvantage: the unusual appearance of the child’s new leg, a backwards foot where the knee used to be. The way the leg ultimately looks, says Sara Swaim, RN, BSN, an experienced orthopedic nurse at Children’s, “is the factor that’s difficult for people to move beyond.”

This abnormal-looking result, says Gebhardt, is what makes the surgery controversial. “You’re doing an operation where you’re removing the tumor, but you’re also ending up with a deformity. Most of the time in medicine we don’t create deformities. And so some surgeons absolutely won’t do it.” Yet, for the right patient, says Gebhardt, the rotationplasty has powerful advantages, allowing them to maintain an active, athletic lifestyle without any limitations.

For the McGaff family, it came down to a single, wrenching choice between Caitlynne’s active lifestyle and a normal-looking leg. What made this choice a little bit easier, says her mother, Doreen, was the chance to meet with children who had both types of surgery. As the McGaffs weighed the options, they met with a young girl about Caitlynne’s age, Olivia, who had gone through the very same surgery. “It’s such a different procedure, it’s hard to wrap your mind around it,” remembers Doreen. “You can see pictures, but you just don’t get it until you can see somebody and you can see how well they’re functioning.”

Even after the meeting, Caitlynne’s parents were still torn, but the time for a decision was drawing near: Caitlynne was scheduled for surgery only a week later. So they presented the options to her. “We felt like she should have a say, even though she was only 7,” says Doreen. “It’s her body.”

Thanks to her rotationplasty Caitlynne can do everything she once did
Caitlynne knew she wanted to have an active life. She wanted to jump and run and play outside. She wanted to join her parents and younger brothers in any adventures the future might hold. Together, Caitlynne and her parents made the decision to have the rotationplasty, says Doreen, “and there’s been no looking back.”

At first, Caitlynne says, it was difficult to adjust to the new sensations and her leg’s appearance after surgery. “I was learning how to move my ‘ankle,’ which is used as my knee,” she says. “It was weird. It also didn’t help that I got questions and stares everywhere.”

Physical therapy was also extremely challenging, recalls Caitlynne. “It was so hard, so frustrating to not be able to just walk or run normally.” She first had to adjust to moving her foot in a completely new way and then to using a prosthetic lower leg that fit over her new “knee”.

But Caitlynne stuck with it. Within a few months she was back to walking, and by the end of the year, she could run, jump and even do gymnastics again. “I could still do everything that I could do before,” she says. It was almost like there was no change at all except that it looked different.”

Since the surgery, Caitlynne’s parents have gone to great lengths to help her be active and independent, hiring special instructors to help her get her athletic talents back. “We never want to even present the idea that she might not be able to do something or might not do it as well,” says Doreen. “We just didn’t want to put that in her head.”

All of Caitlynne’s hard work and her parents’ love and support have paid off. Today, she is cancer-free and walks without a hint of a handicap. The only sign of her year-long ordeal is the faint metallic gleam of her prosthesis beneath her leggings. She’s a sophomore at Boston Latin High School, where she’s involved in softball, show choir, singing and acting. In her free time, she rock-climbs, water-skis, ice-skates and plays softball. Although she lost her leg, the rotationplasty allows her keep pace with her friends and family members.

“I’ve been told that I can live a normal life,” says Caitlynne, “so that’s just what I’ve been doing.”