Abri Bentley was saying her prayers before bed when she stopped to tell her mother about a pain in her leg. "She thought she'd sprained it," Nikkole Bentley tells us. "We figured it was growing pains." But over the next few days, the pain persisted. And so did Nikkole, taking Abri to the emergency department, her pediatrician and eventually, an orthopedic surgeon. "When I picked her up for her appointment, we left her backpack at school because we thought she'd be going back," Nikkole tells us.
Instead, that day — Sept. 4, 2015 — marked Abri's last day of second grade. She was diagnosed with Ewing sarcoma, a rare type of cancer, and would spend the next 11 months fighting it. Abri had 17 rounds of chemotherapy and limb salvage surgery, which required doctors to remove her cancerous left tibia and replace it with a cadaver arm bone. That left Abri with a new limb she called "Arg" — a combination arm and leg. ("She's all about the humor," Nikkole says.)
While the chemotherapy did its job, the limb salvage surgery was no laughing matter. "The limb salvage didn't work well," Nikkole says. So Abri had two choices: try another limb salvage procedure or have her lower leg amputated. "We went through everything with her," Nikkole says. "She spoke to amputees and people who had multiple limb salvage procedures. She went to counselors. We made a pros and cons list." The family also met with the surgeons who would potentially perform the procedures. Then Nikkole and her husband, Rod, asked Abri what she wanted to do. "We've let her make a lot of the decisions so that she would have control over what she was going through," Nikkole says. For Abri, the answer was clear: Say goodbye to Arg. And do it at Mayo Clinic.
"We were choosing between surgeons in California and Minnesota," Nikkole tells us. "We could go to California, where it was warm, or Minnesota, where it was freezing cold." Abri, an Arizona native, chose cold. "Dr. Rose won her heart," Nikkole says by way of explanation. That's orthopedic surgeon Peter Rose, M.D., who together with colleagues Anthony Stans, M.D., and Steven Moran, M.D., came up with a plan tailored to Abri. "I feel like we got the dream team," Nikkole says. "The physicians were fabulous." As was everyone else the family encountered. "Mayo Clinic is the most amazing place," Nikkole says. "We met nothing but genuine, caring, loving people." People like physical therapist Wendy Timm, who "we miss every single day," Nikkole tells us. Before the family left Mayo, Timm told Abri that she'd make a trip to Arizona to hike with her once she's ready. "Abri is planning to work her butt off so that Wendy can come down soon," Nikkole says.
And she's well on her way to that hike. Nikkole tells us that Abri is adjusting to life with "Stumpy" — Arg's replacement — and getting ready to be fitted with a prosthetic. "We've been more blessed than broken," Nikkole says. "We don't take things for granted anymore. Cancer changes you, and that's not the worst thing."
Cancer has also changed the prayers Abri says each night. Now, when she's getting tucked in, she recites this: "Dear God: Please give doctors the right answer to cancer so nobody has to go through this ever again."
To that we say, Amen.
You can learn more about Abri, including her efforts to raise awareness and funds for childhood cancer research, on her Facebook page or YouTube channel. Then leave a comment below before using the social media tools atop this page to share this story with others.