The journey O’Laya’s bone cancer has taken her on only boosts her spirits
O’Laya Rodgers probably was the most excited teenager to enter Madison High School this fall. She had to take off a year and a half of school as she battled bone cancer. Now, she’s looking forward to prom and graduation.
While Rodgers was celebrating her 16th birthday, a mass in her left knee changed her life.
Two months later, during her sophomore year, she was diagnosed with sarcoma of her bone and started chemotherapy within days. Then radiation therapy was added. Later, she had a distal femoral replacement (including a knee replacement), leaving her with a hinged prosthesis and no ligaments.
“I thought she had bruising on her knee, but they showed me the images of that mass that ate away her bone. That's when it started going downhill,” said Karen Jones, O’Laya’s mom.
“Once I heard those words, my heart stopped for a minute,” recalled Rodgers. “I didn’t know what I was going to do at that moment – I just wanted to be alone.
“They were telling me the type of cancer I had, what it had done, and what I was going to go through as far as the chemo, radiation and surgery,” Rodgers continued. “They didn’t have a reason because they don’t know why things like cancer happen to kids.”
What is sarcoma?
Sarcoma is a cancer that develops in the body’s connective tissue or bone. This diagnosis is heard by less than one percent of all patients who are told they have cancer. Most patients with soft tissue sarcoma are diagnosed in their 20s and 30s.
Patients diagnosed with bone sarcomas are children, some as young as 10. The disease usually begins developing as they are going through growth spurts. The most common symptoms of bone cancer typically appear as pain in the area where the tumor is located, a lump or swelling, and sometimes broken bones.
For O’Laya, the pain in her knee started when she was 15 and working at Burger King. She’s now 17.
O’Laya’s treatment plan begins
First came chemotherapy at the Children’s Hospital of Michigan.
“You start to look sick, and that’s normal because you have a deadly helpful medicine going through your body. You get weaker, skinnier, lose your appetite, and don’t eat at all. Then you get scared to eat so you don’t throw up. Many things happen to you while on chemo, and you can’t do anything about it.”
Her mom said there were good, bad and terrible days.
“When my hair was coming out, I tried to be strong on the outside, but I was breaking on the inside. When I finally got my hair cut off, I wanted to cry. After a while, I loved my bald head, and I was happy because I didn’t have to sit and get my hair done,” said Rodgers.
But first, donuts!
Due to a collaborative partnership between Karmanos Cancer Center and the pediatric oncology team at Children’s Hospital, Rodgers received radiation therapy on her left knee at Karmanos via Dunkin Donuts, you might say.
“Radiation was 25 minutes, but it felt like five,” explained Rodgers. “I went Monday through Friday for five weeks. I used to always get a glazed donut.”
“O’Laya was cheerful and pleasant. She would often tell me about what donut she had each day prior to her treatment or when I saw her on a weekly treatment visit,” said Steven Miller, M.D., radiation oncologist and member of the Sarcoma and Pediatric Oncology Multidisciplinary Teams (MDT) at Karmanos. “She was also always eager to update me about her siblings.”
“There was a big machine in the radiation room, and it had a circle part of it and the table under it where the patients lay. It has two computers that have a picture of your face and your first and last name. Then on a wall to the front, it’s a whiteboard with all the radiation staff names on it. They introduced themselves every day,” described Rodgers.
“They made sure I was comfortable and okay and told me what was going to happen. They made me laugh. I liked it there and appreciated everybody.”
Rodgers would usually wear baggy pants to protect her skin while undergoing radiation. Music was available to listen to, but she had a quieter approach to accepting her treatment.
“I’m able to keep my emotions under control by trying to relax and just listen to my body. I also take medicine; I talk, listen, or watch things that make me happy or keep me calm. I sleep it off sometimes or just let it out, but I don’t do that often. Only when I’m really overwhelmed and stressed, and it becomes too much,” Rodgers shared.
She also prayed and asked for strength, believing God “doesn’t give you what you can’t handle.”
Thinking about things that make her happy helped a lot. She talked to people who brought her joy.
“She loved interacting with the staff, especially the nurses and the radiation therapists,” Dr. Miller added. “O’Laya was very optimistic about her disease while going through radiation treatments. The nurses really liked her. She was always cheerful and upbeat.”
Rodgers says she entertained herself with her naturally silly personality to keep her spirits high. She was a gift shop regular. While in the hospital one day, some people she encountered started singing Pitbull’s “We Are One (Ole Ola)” song from the 2014 FIFA World Cup. It was moments like this that made her laugh.
Tumor and bone replacement surgery
Alysia Kemp, M.D., Rodgers’ orthopedic oncology surgeon, leader of the Sarcoma Oncology MDT and member of the Pediatric Oncology MDT, said she’s undergone more physical therapy than the average child. That’s because of challenges like keeping her leg straight in a brace, battling the stiffness radiation can cause, and slow wound healing because of chemotherapy.
“O’Laya’s bone cancer was treated with a novel regimen that required chemotherapy, radiation and surgery. After surgery, she worked diligently with physical therapy to regain her function and range of motion.”
Mature beyond her years, Dr. Kemp explained that even with complications and setbacks, Rodgers continued supporting her mom by helping her siblings with a “beautiful personality and attitude.” She’s the third oldest of nine kids.
Even with brothers and sisters of her own, Rodgers has unofficially adopted Dr. Kemp’s two baby boys, who were born while she was still in treatment. She calls them her brothers, which brings out laughter between Rodgers and Dr. Kemp.
“My siblings literally hold a piece of my heart. I have four sisters and four brothers,” said Rodgers. “I love them so much, and I would rather go through anything than have them go through what I’m going through. I know God wouldn’t put us through anything we can’t handle.”
Her mom said all eight of Rodgers’ siblings are glad to have her home after several hospital stays for months on end. They even wait on her hand and foot.
Looking beyond her cancer
Rodgers has endured a lot in her fight to be able to do “normal things” again: chemotherapy, a distal femur replacement, pain, months in the hospital having to keep her leg straight in a brace, and physical therapy. She’s still on the road to recovery.
“I’ll be fine. It’s the babies who get diagnosed, and seeing them sick and suffering that breaks my heart,” expressed Rodgers.
She dreams of being a pediatric nurse, but Rodgers says that sometimes it feels like a big task.
“Sometimes I can’t help but think, what if the cancer returns.”
Anticipating every next appointment can be highly emotional, but Mom says therapy, especially in-patient therapy, has been a tremendous help.
Continuing physical therapy, she’s now back in school, in-person, for her senior year of high school. And though she is now in a wheelchair, she’s excited to be getting back to her studies.
“I’m taking chemistry, English, economics, algebra. I have this tutorial class and it’s a class where you can do any school work that you want,” Rodgers explained. “One of the teachers asked me if I wanted to join the Esports program after school. I’m looking forward to trying that out.”
She also has an epic vacation to look forward to. This fall, the Make-A-Wish Foundation will send Rodgers and her siblings to Orlando, Florida. They’ll spend time at Give Kids the World Village.
What would Rodgers tell you if you found yourself in her shoes?
“Keep pushing even when you want to give up. It’s gold at the end of the rainbow. It’s times when you’ll feel like you’re at the end. Don’t let anybody tell you how you feel. They are not you. In life, some things are going to change – you just have to adjust.”
If you or a loved one is diagnosed with sarcoma, it is critical to be treated by specialists at a center for excellence. The Karmanos experts on the Sarcoma Oncology Multidisciplinary Team dedicate their careers to researching and treating this disease. Call 1-800-KARMANOS (1-800-527-6266) or visit karmanos.org to make an appointment.