Local orthopedic oncologist implants a special device in kids to save their limbs from amputation.
Makayla Genoble looks like a typical 10-year-old girl, with her freckled cheeks bright smile and charming brown eyes. Only there is something about Makayla that is anything but typical.
She is one of a few children in the world with a “bionic” bone.
At the age of 8, Makayla was diagnosed with osteosarcoma, bone cancer right above her left knee. Until a few years ago, doctors would either have been forced to amputate her leg or have her endure years of painful surgery to replace a prosthetic leg as she grew.
But now, thanks to a new implanted prosthesis, Makayla and other children with bone cancer can lead much more normal lives. The custom-made titanium prosthesis, called the JTS Implant, allows the children to grow as they age by matching the development of their healthy limb.
The implant has motors that can be operated from outside the body using electromagnets that gradually lengthen the implant and, subsequently, the limb. The process lengthens the implant a millimeter at a time – up to 4 millimeters in the span of about 15 minutes. The result is a painless expansion that enables the child to walk out of the physician's room ready to go about their day.
Dr. Howard G. Rosenthal, an orthopedic oncologist at The University of Kansas Sarcoma Center in Overland Park, implanted Makayla’s device the device in June 2014. He is the only surgeon in the region who has used the new prosthesis.
Each implant must be custom-built for the patient, requiring extensive planning between Rosenthal and the manufacturer, Stanmore Implants of the United Kingdom. Rosenthal says the bionic bone is so unique that it encountered import issues. Last December, U.S. Customs and Border Protection in New York held up three of the prostheses created for his patients. Rosenthal contacted U.S. Sen. Pat Roberts of Kansas to help clear the prostheses for shipment into the country.
Makayla underwent chemotherapy from March 2014 to the end of October of that year, along with extensive physical therapy. She is now cancer-free and understandably delighted with the outcome and her bionic bone.
“I really like it because I don’t have to be in a wheelchair anymore,” says Makayla, a bright girl who is mature beyond her years. She was visiting Overland Park recently with her parents, Michael Genoble and Angela Dryden. The family, from Iola, Kansas, makes a trip to the area about every three months to see Rosenthal for the painless, bone-lengthening procedure that Makayla will undergo until she stops growing.
Of the seven “growers” Rosenthal has implanted with the device, all are doing well, even though some are still undergoing chemotherapy treatments, he says.
The technology is tremendous, says Rosenthal, because it means saving the child from continued pain of surgeries and lowering the risk of infection to essentially zero.
Fewer surgeries also mean less cost, he noted, and the children aren’t taken out of school several times a year to interrupt their lives.
“It gives them the ability to look, act and behave just like their peers,” Rosenthal says about the device. “It allows them to be involved in sports. Their peers realize that these patients have undergone a major surgery; they’ve undergone chemotherapy; they’re missing time from school. This allows these kids to get back to a more normal kid’s life without having to have numerous repetitive surgeries all the time.”
Makayla says her journey started when she fell off her bike and her leg became swollen.
“I started having these horrible pains,” she says. “At first we thought they were growing pains. But we went to the hospital and they took an X-ray and the doctor saw something.”
Her parents were told to take her to Children’s Mercy Hospital in Kansas City.
“They sat Mom and Dad down, and I sat in a different room. Mom came out crying. And she said, ‘Makayla.’ And I said, ‘What? Is my leg broken?’ And she said, ‘No, you have cancer.’ And I started crying because I was like, ‘Mom, is my hair going to fall out?’”
Turns out it did fall out, but it grew back. What also grew is Makayla’s courage during her ordeal, say her parents.
“It changes your perspective on life all together,” says Dryden, adding that she and Makayla’s father were grateful for being referred to Rosenthal.
“People travel a long way to see Dr. Rosenthal,” Michael Genoble says. “He’s one of the best, and we wanted our daughter to have the best.”
Makayla says her journey with the implant was hard at first.
“They made me get out and do all my physical therapy and made me walk,” she says. “And I did cry.”
But her hard work paid off. She now considers her future bright and is considering becoming a doctor when she grows up.
“I want to be a children’s doctor because I love the idea of children. I love babies,” she says. “But the scary thing is, I’m not sure I want to be a kids’ doctor because it would be heartbreaking if someone passed away.”
To Rosenthal, the ability to help children with bone cancer is a joy beyond description. Typically, the kids are ages 6 to 12 years old.
“If you get to cure cancer, and we are curing most of these types of cancers, and you give the patient back their life in a previously limb-threatening and a life-threatening disease, how can that not bring you joy and happiness and thanks?” he says.
“The best joy that I get is the year afterward and the child is finished with their chemo. They’re back to their normal activities, and they’ve forgotten about it, and the father gives me a hug. That’s an expression of thanks that really can’t be delivered in words.”
For more information about the JTS Implant, visit implantsforchildren.com.