‘I’m Not Disabled, I’m Enhanced’

Abri Bentley Doesn’t Let Losing a Leg Stop Her

It was Aug. 27, 2015, and Abriel “Abri” Bentley had just started second grade. She was lying in bed, saying her prayers to her dad.

“Dad, I feel like I sprained my leg,” she said.

“You can’t sprain your leg praying,” her dad, Rod, replied.

The next morning, Abri woke up crying.

“We thought she slept on it strange or pulled a muscle,” Nikkole remembers.

But it wasn’t.

The pain had begun on a Thursday night. On Friday night, Abri woke up at about 10:30 p.m. screaming and holding her leg. Rod took her to the emergency room, but the doctors didn’t see anything. They said it was growing pains and to give her Tylenol and Motrin.

That weekend, Abri ran around playing. She was always an active child, and she loved dance. She was taking four classes at the time: tumbling, tap/jazz, hip-hop and ballet. Sometimes that weekend she was fine. Others, she was screaming in pain.

By Monday, Abri’s leg still hurt, so her parents took her to her pediatrician. Again, the diagnosis was growing pains. They took blood work, but it came back normal.

When she was still in pain on Wednesday, they called an orthopedic surgeon.

The surgeon noticed that Abri’s leg was slightly pink and a little warm.

“If you ran your finger across it, she would scream,” Nikkole remembers.

Suspecting a bone infection, the doctor admitted her to the hospital. She was put in a walking boot and was scheduled for an MRI for that night. She also had a biopsy.

The Bentleys—the family also includes Ariya, who was 1 at the time; and Ashlyn, 15—were told that the results of the biopsy would be back in seven to 10 days. They settled in to wait.

The next night, there was a knock on the door.

Life, Changed

“When I opened the door, it was like 7:30 at night,” Nikkole remembers. “When they said, 'We want to introduce you to the head of oncology,' I knew.”

And in that moment, as the diagnosis of cancer was delivered, life changed for them all.

The family was told it was Ewing’s sarcoma, a type of tumor that forms in bone or soft tissue.

“All that kept running through my mind was that I was going to watch my baby die a horrible, painful death and that there was nothing I could do about it.”

Ewing’s sarcoma is a rare type of cancer that usually affects children and teenagers.

“It is very aggressive and spreads quickly,” Nikkole says. “If you have a localized tumor, your chances are 86%. If it’s metastasized—and dependent if it’s in one place or multiple—the chances can be 7% to 50%.”

Thankfully, Abri’s tumor, which had formed in her tibia and made a hole, turned out to be localized.

Trying to Walk Again

Abri was immediately placed in a wheelchair so that her leg, with its hole, wouldn’t break. She would end up staying in the wheelchair for nine months.

She endured 17 rounds of “horrible, horrible” chemo that lasted for 11 months, with one week on and one week off.

Three months after diagnosis, she had a limb salvage surgery, where the doctors removed almost all of her tibia and replaced it with an adult cadaver bone.
Six months after the surgery, Abri was allowed to try to walk again. She first used a walker, then a cane. But when she finally got to the point where she could walk without the cane, she slipped and fell and broke her femur, which meant that it was immediately back into a cast and wheelchair.

A Big Decision

After her fall, Abri’s leg never really improved. She was always in pain, and so, in June 2017, the doctors decided to do surgery to see why.

When they went in, they found that the cadaver bone was all broken. They removed it, replaced it with a rod and placed Abri in a cast that ran from her toes almost up to her hip.

The plan was to do another limb salvage, but Abri wanted no part of it.

“She said no because she wouldn’t be able to run, jump or dance,” Nikkole explains. “She’d have a leg, but it wouldn’t work well.”

Abri’s choice? To amputate her leg.

Nine-year-old Abri didn’t make her final decision lightly. She interviewed amputees, interviewed people who underwent limb salvage, went to a counselor, and visited with doctors and interviewed them.

“It was difficult to find a doctor to amputate on a 9-year-old. They called it elective because they wanted to do limb salvage again,” Nikkole says.

Finally, the family assembled what they called Abri’s “Dream Team.” They went to the Mayo Clinic in Minnesota, where the doctors had agreed to perform the surgery.

On Nov. 15, 2017, Abri had her leg amputated.

“It was a 10-hour surgery, tons of screws and plates and skin grafts, and months and months of recovery,” Nikkole says.

Ariya was with Nikkole, and Ashlyn withdrew from Chaparral High School at the time and enrolled in online school so she could help as well.

It turned out Abri was right in wanting the amputation. After the surgery, one of the surgeons—who had thought limb salvage could still have been an option—came out and told the family that it would never have worked, that they found she didn’t have enough left to work with when they actually went in.

By March 2018, the strong and determined Abri was able to get up on a prosthetic—and she’s been unstoppable ever since. She runs, hikes and dances and even participated in her first recital.

“I feel awesome!” Abri says now, sharing that during all the treatments, she hated “not being able to be with my friends because I’m always a social butterfly. I couldn’t have any playdates. And having a leg that didn’t work because I couldn’t run or dance or do anything I wanted to do.”

The Future

Abri’s days are once again filled with dance. She also enjoys art and says she’s met the most amazing friends at Cochise, her elementary school.

She did repeat second grade since she’d missed all of it and was one of the youngest in class to begin with, so this year she will be in fifth grade.

She has a prosthetic foot but prefers to wear the blade prosthetic, “since it’s bendy.”

“It gives her a better quality of life,” Nikkole explains. “We always say our hashtag is #moreblessedthanbroken because really, we’ve gained so much through all of us. Everything has changed. The superficial stuff doesn’t bother us anymore. You realize how precious life is, how short life is, and you have to make the most of every day. It really is a choice. In fact, when someone just asked Abri, ‘What was the best part of cancer?’ I was really surprised, but her answer was, ‘Everything. My family is closer, I’m closer to God, and so many blessings came out of it.’

“We were so angry and devastated [when we found out], and then we sat down and said we had to make a choice. Were we going to let this break us, or we were going to turn it over to God and let this make us stronger. She could sit around and be upset all the time about what life has handed her, or she could choose to be empowered, and she chose that. It makes a big difference.”

Today, Ashlyn is at Arizona Christian University studying worship leading, and Ariya is starting kindergarten at Cochise. As for Abri, she says she has four things she wants to be when she grows up: “I want to be a mom, a professional dancer, a doctor and a firefighter. I want to be a kid’s doctor, but if cancer is still around, then definitely a kid’s cancer doctor.” 

Abri, who marks three years with No Evidence of Disease this month, is looking forward to the future and takes everything as a blessing, even her blade. As she so aptly puts it, “I’m not disabled, I’m enhanced.”

To follow Abri’s adventures, visit @teamabri on Instagram.

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