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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