5 things we learned from our daughter’s rotationplasty

In September 2014, when she was just eight years old, our daughter Elise was diagnosed with osteosarcoma, a type of bone cancer. It was in her right leg. Part of her treatment involved a surgery called a “rotationplasty,” which my husband and I had never even heard of prior to coming to MD Anderson.

Here are five lessons we’ve learned since then — about rotationplasties, sarcoma and life in general.

Realize kids see things differently

Initially, we assumed our only surgical options were limb salvage (in which diseased bone is replaced with a man-made implant, a donor bone, or a combination of the two) or amputation. We didn’t think limb salvage was the right choice for Elise, so we prepared her to have an above-the-knee amputation. But when we met with Dr. Valerae Lewis, she told us about a third option: rotationplasty. Essentially, it’s where you cut somebody’s leg in half, remove the cancerous part, and put what’s left on backwards, so the ankle functions like a new knee.

Dr. Lewis showed us a video of other children who’d had the procedure, and they could still do all of the things they’d done before. One was snowboarding, and another was a Paralympic high jumper. Elise looked at the video and very casually said, “Yeah, that’s what I want.”

Today, Elise’s attitude hasn’t changed. Our daughter knows she’s great just the way she is. And if you don’t like her leg or it scares you, that’s your problem. She sees herself as a kid who just happens to have had a rotationplasty, rather than a “rotationplasty kid.” It’s a subtle difference, but one worth noting.

Seek out a sarcoma center

There aren’t many sarcoma centers in the U.S., but if you’re living in a state that doesn’t have one, you really need to travel to one that does. It’s absolutely imperative that your child be seen by specialists who deal with sarcomas frequently, because they get misdiagnosed a lot.

MD Anderson has a huge sarcoma center, with doctors, surgeons, pathologists and radiologists who look at sarcomas every single day. That means they can tell the difference between diseased and healthy tissue. And that’s really important.

It’s also hard to find physical therapists who have experience dealing with rotationplasties. At MD Anderson, Elise met with hers twice daily as an inpatient, and once a week after chemo ended. She’s made incredible progress. Three months after chemo ended, she was fitted with a prosthetic leg. A few months after that, she started walking without crutches. And today, she dances, runs, jumps rope and plays softball just like everyone else.

Find a parent expert

My advice to any parent whose child is about to undergo a rotationplasty is to find another family that’s already gone through what you’re about to, and talk to the parents. You can do this either through social media or your doctor. If you’re comfortable with it, have your child talk to the other child, too.

A parent expert can guide you and help you stay much calmer. For instance, when a nurse comes in to give your child chemotherapy, he or she may be covered in protective gear, which can be very scary. But the parent expert can say, “Don’t worry. That’s normal.”

Expect your lives to change

Cancer treatment changed everything about the way we lived our lives. To maintain a healthy home environment for Elise, we set up a room for her downstairs, away from her siblings. We also didn’t have anyone over to the house. And my husband and I stopped shaking hands and hugging people.

With osteosarcoma, you have to use large amounts of very harsh chemotherapy to treat the cancer. And the more chemo you get, the harder it is to recover from. So it was pretty difficult for Elise, and there was no “victory lap” once she finished her last round. It was more like crawling across the finish line. But she made it, and she’s shown no evidence of disease since May 2015.

Know what’s important

Our family wasn’t really big on holiday traditions before cancer, but after cancer, the holidays were even less of a concern. Our day-to-day interactions are far more important than any one special day. And I would take a year of boring regular days over a holiday any time.

One thing cancer has taught us is how to recognize what’s important and what’s not. And I still feel gratitude every single day, because my daughter is alive. That means today, I get to see all five of my children playing together, not just four. And that’s a big deal.

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