Nine-year-old superhero has cape, will fly

By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Just call her Wonder Woman.

Kenley Mullis breezes through the hallways of Riley Hospital for Children in her wheelchair with a red superhero cape draped over her back.

This is a big day for 9-year-old Kenley, as she celebrates the end of chemotherapy for osteosarcoma, a type of bone cancer.

The third-grader has vanquished cancer, with help from her super-human care team of nurses, therapists and physicians, not to mention her super-supportive family.

Kenley has been a fan of Wonder Woman for years. She dresses the part whenever she can, but it’s more than that, says her mom, Kara.

“Kenley is our Wonder Woman. “She’s been a fighter since day one,” Mullis said on Friday before her daughter was discharged after her last chemo treatment.

That’s because Kenley has been a Riley baby from birth. Born nine weeks early, she spent the first few months of her life in the NICU.

“Nothing has come easy to her,” Mullis said. “She has always had to work harder – even just the little things like being able to eat. That took a long time and lot of intervention from so many therapists and specialists.”

But that fight, that determination is why Mullis believes her daughter is going to come out a champion.

HER LEG JUST SNAPPED

It was last February when Kenley was diagnosed with osteosarcoma. There were no early signs, no symptoms, her mom said.

In fact, just two days before X-rays revealed a large tumor in her right leg, she had hiked more than 2 miles in 8-inch-deep snow with her family.

“She was not slowed down, there were no red flags,” Mullis said, noting before her illness, her daughter played softball and participated in gymnastics, so bumps and bruises were a normal part of life.

“This is a girl who couldn’t just walk into a room. She had to dance into it or leap into it. She has always been a natural athlete.”

Two days after that hike in the snow, Kenley and her mom were playing outside in the driveway when the snow had melted.

They were racing back and forth to the mailbox when suddenly, Kenley collapsed. Her leg was broken.

“Her femur, the strongest bone in her body, should not have broken,” Mullis said, “and all of the sudden we’re being sent to Riley and they’re telling me before she’s even sent upstairs from the ER that they see a tumor in her leg.”

A TOUGH CHOICE

The first priority was to remove the tumor.

Mullis and her husband, Trevor, had a difficult decision to make. They could opt to have their daughter’s leg amputated, guaranteeing that the cancer was eradicated, or they could try a more unconventional approach – have the large tumor and surrounding margins removed, then install an external fixator, a metal frame that holds bones in place.

The idea is that over time, the fixator can be adjusted to slowly lengthen her leg and realign the bone, giving her femur a chance to regenerate itself as naturally as possible.

“We knew this path would be harder, and there’s not a roadmap for it,” Mullis said, “but it would give her the most options going forward as far as activity levels. She is a very active girl, until 10 months ago when she was forced to stop everything and sit in a chair.”

Riley orthopedic surgeon Dr. Christopher Collier, who specializes in the management of bone and soft tissue tumors, removed the tumor from her leg, while IU Health orthopedic surgeon Dr. Brian Mullis (no relation) fitted her with the fixator. Her oncologist is Dr. Michael Ferguson.

Because of the orthopedic part of Kenley’s cancer journey, the chemo portion has taken a lot longer than normal.

“Nothing about her journey has been typical,” her mom said.

What should have been a five- to six-month timeline for chemo has been stretched out over 10 months because she has had several leg surgeries, and more will be needed.

In four to six weeks, surgeons will put new pins on the fixator and start pushing and promoting that bone to fuse back together, her mom explained. The device itself likely won’t come off for at least another six months.

ANIMAL LOVER

The Ellettsville, Indiana, family, which also includes 14-year-old Logan and 11-year-old Lucy, has adapted as best they can to the turmoil of the past 10 months, but they are eager for a certain 9-year-old Wonder Woman to get back on her feet.

When she considers her future, Kenley wants to be sure there are plenty of animals in it. In fact, she dreams of someday living in a barn house next door to her parents.

“She wants to live with some baby goats and some huskies,” Mullis said with a laugh. “She thinks that sounds like an ideal life.”

But really what she wants first is to recapture some of the little moments she has missed in the past 10 months, like going upstairs and playing with her sister and sleeping in her own bed.

“She wants to go walking on the boardwalk at the nature preserve by our house, swing with her sister, and have swordfights and nerf gun battles with her brother,” Mullis said.

“That’s why we are taking the longer, harder route right now, putting in the time and effort to get her back to those carefree kid-playing days if that’s possible.”

There’s not a roadmap to follow, and maybe that’s OK, Mullis said. Maybe Kenley charts the path for another osteosarcoma patient who takes this route.

Meanwhile, the family marches on, heading into the holidays with renewed hope and gratitude for how far they’ve come.

“We are just trying to overdose on love and laughter and get through each day,” Mullis said, “pushing through to hopefully a better tomorrow.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org