August 28, 2019
Warrior. You don’t often hear this word used to describe a typical 13-year-old. But Ajiah Robinson is anything but typical.
Like most teenagers, Ajiah enjoys spending time with her friends, but she also has a uniquely generous heart – going so far as to use her own allowance to help her friends out when they need it. She’s a good student, cleans her room, does her chores and respects her parents and teachers. But make no mistake: Ajiah has a kind nature, but she’s no delicate flower. Her parents, Myriam and Darryl Robinson, describe her as creative, strong-willed and able to make some noise – a warrior.
The warrior in Ajiah was put to the test in October 2017 when she was 12. A simple visit to her family physician for a nagging cold led to a completely unexpected diagnosis.
As Myriam tells it, her daughter had been feeling pain below her right knee. She mentioned this to the doctor while in the office for the cold. He ordered an X-ray of Ajiah’s leg. The results showed a concerning bone lesion. Ajiah was referred to The University of Kansas Cancer Center, where she met Kyle Sweeney, MD, a specialist in musculoskeletal oncology and reconstructive surgery.
Dr. Sweeney performed a biopsy, which revealed osteosarcoma – the most common bone sarcoma for Ajiah’s age group. It’s a difficult form of cancer that would require surgery and chemotherapy.
“When we found out about Ajiah’s cancer, we felt she had every right to sit with us and hear the doctors explain what was happening,” says Darryl. “It was difficult to hear what she was going to have to go through, but she didn’t cry or try to ignore it.” In fact, her dad adds, Ajiah then did her own research so she could ask her doctors and nurses questions about her condition and care plan.
Partnering for osteosarcoma care
Ajiah’s treatment occurred in phases in a close partnership between The University of Kansas Cancer Center Sarcoma Center and Children’s Mercy Kansas City. The cancer center regularly convenes its interdisciplinary tumor board, which includes participants from Children’s Mercy and brings together expertise in oncology, radiology and pathology. The group reviews patient cases and collaborates to define each patient’s personalized treatment plan.
As Dr. Sweeney points out, “There are no cookie-cutter answers to these cases, so working together is a huge benefit.”
Katherine Chastain, MD, a pediatric hematology/oncology specialist at Children’s Mercy, managed Ajiah’s chemotherapy treatments before and after surgery, keeping in close communication with Dr. Sweeney and Ajiah’s parents.
“I cannot overstate the importance of patient support, especially for a child,” notes Dr. Sweeney. “Ajiah’s parents were appropriately concerned, but they also held it together for her and approached it in a very healthy way. It’s not an easy form of chemotherapy. Ajiah was never visibly anxious or scared, though I’m sure she had to be. She is a pretty incredible girl.”
Ajiah faced her journey with courage and strength.
“Once chemotherapy started, I asked her about how she was feeling and told her not to hold it in,” Darryl shares. “We held each other, and she cried very softly. That was the first and last time she cried through the whole process.”
Darryl and Myriam appreciated the seamless experience The University of Kansas Cancer Center and Children’s Mercy created.
“The doctors were wonderful,” Darryl says. “They were always on top of everything Ajiah needed. We really appreciated that they spoke to her directly and reassured her of what they expected and how the steps would go.”
Osteosarcoma treatment success
After the initial round of chemotherapy, Dr. Sweeney performed surgery to remove about half of Ajiah’s tibia bone. Using an endoprosthesis – a metal implant cemented into the remainder of the tibia – he reconstructed her knee.
“With osteosarcoma, you have to get everything or it will come back. It’s a major surgery,” explains Dr. Sweeney. “The other option is amputation. But with this prosthesis, we were able to save Ajiah’s knee and leg.”
The surgery exceeded everyone’s expectations.
“We were hoping for 90% or higher success rate,” says Darryl. “When we found out Dr. Sweeney got 99% of the cancer, that improved Ajiah’s prognosis tremendously. She needed to hear that. We all did.”
The aggressive procedure makes for a challenging recovery process, but true to her warrior self, Ajiah healed well and achieved excellent range of motion. When physical therapists had her up and walking after surgery, she never hesitated. She endured a second round of chemotherapy with her usual positive attitude.
“There were times you would think the process of chemotherapy and surgeries would just wear her down,” observes Darryl. “She was tired, but she never quit. No matter what she had to do, she put her best foot forward.”
A crucial catch
Dr. Sweeney is highly optimistic about Ajiah’s good health and future.
Because of osteosarcoma’s aggressive nature, children’s survival rate before the introduction of chemotherapy was less than 20%, he says. But today, if caught early, the survival rate is 80%.
“Ajiah’s postsurgery pathology showed more than 99% of the tumor cells were dead. She is now considered to be in remission,” Dr. Sweeney says. “Osteosarcoma can come back up to 10 years after treatment, so we’ll monitor Ajiah closely over that time frame. Most importantly, we caught her disease early, and that gives us the best shot at curing her.”
For this reason, Dr. Sweeney says Ajiah exemplifies a “Crucial Catch” success. She is among seven cancer survivors being recognized by the Kansas City Chiefs 2018 Crucial Catch program. In addition to attending a Chiefs practice and lunch, where she will meet Chiefs players and receive autographs, Ajiah will be featured on the “I cheer for” cards used at games to promote cancer awareness.
“She was mature before, but now she has a different outlook on life,” says Darryl. “She sees kids on TV going through cancer and other diseases, and she has such empathy. She can relate to what they are experiencing.”
And that warrior spirit? Strong as ever.
“She’s ready to go back to school,” says Myriam. “She’s curious about what she’ll be able to do in gym. She’s going to try running, swimming and bike riding. She’s looking forward to seeing just how far she can go.”
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To make an appointment at The University of Kansas Cancer Center, call 913-588-1227.