- Telangiectatic osteosarcoma is a rare type of bone cancer that’s difficult to treat.
- It responds best to chemotherapy and surgery.
- A stainless steel internal prosthesis in the leg can uniformly lengthen the leg with a specialized magnet.
During a baseball game in April 2016, 11-year-old Kaysen Camat-Toki noticed his leg felt different.
“I started limping and knew something wasn’t right. On my team, I was the star player and leader of the team, and I always had a positive attitude. Coaches and players knew something was going on,” Kaysen told Healthline.
He took 2 weeks off from baseball to give his leg a rest. During that time, his parents took him to an urgent care facility.
“They took X-rays and didn’t see anything, and they said it was growing pains and would go away,” Kaysen’s mom, Cindy Camat-Toki, told Healthline.
However, in May 2016, Kaysen began to feel more pain. After visiting an orthopedic surgeon, he received a diagnosis of a rare type of bone cancer: telangiectatic osteosarcoma.
Because this form of cancer is difficult to treat, the doctor suggested Kaysen visit the City of Hope in California, the only independent research and treatment center for cancer on the West Coast with the expertise and technology available to treat his condition.
Although the Camat-Tokis were on board, they had to travel more than 230 miles from their Las Vegas home.
“As soon as we found out it was cancer on that Friday… by Monday we were already in California. We didn’t want to waste any more time. Kaysen couldn’t walk, and it was 6 weeks from the time he started complaining,” Cindy said.
By chance, an appointment opened up, and Kaysen was able to see a City of Hope doctor the day after he arrived in California. Within a week he was undergoing treatment.
“For all cancers, there’s three approaches: chemotherapy, surgery, and radiation. However, osteosarcoma isn’t very sensitive to radiation, so to be effective and cured of your cancer, you have to go through chemotherapy and surgery,” Dr. Judith K. Sato, pediatric oncologist and director of the musculoskeletal tumor program at City of Hope, told Healthline.
Dr. Jennifer L. Reichek, attending physician in hematology and oncology at Ann & Robert H. Lurie Children’s Hospital of Chicago, adds that telangiectatic osteosarcoma is less responsive to chemotherapy than other types of osteosarcoma, making it harder to treat.
“With that being said, a complete resection, in combination with chemotherapy, is generally successful in treating telangiectatic osteosarcoma when a child has localized disease,” Reichek told Healthline.
This was the case for Kaysen. Because his cancer didn’t spread to other areas of his body, his doctors focused on shrinking the tumor in his leg so the tumor could then be surgically removed.
He was given a combination of high doses of chemotherapy for about 15 weeks, sometimes as often as weekly.
“Prior to undergoing the definitive surgical recession, it’s a very aggressive approach. However, it paid off, so when the time came for his surgery, it was much easier to remove the tumor,” Sato said.
Kaysen’s tumor was removed November 2016. After surgery, he had two choices for reconstruction.
The first was to have his femur tumor removed, move his good tibia (bone between the knee and ankle) up, and attach it to his femur, so his heel would become his kneecap.
This option would have allowed Kaysen to run and play sports, but he would have to always wear a prosthesis.
He chose the second option, which was to have the cancerous part of his femur cut out and replaced with a stainless steel internal prosthesis that could grow internally. The internal prosthesis works to uniformly lengthen his leg with a specialized magnet.
“Being only 11 years old at the time, he still had a lot of growth to go, so we had to design his surgical resection and reconstruction so he would have a functional extremity,” Sato said.
Reichek adds that risks with internal prostheses include infection in the hardware and the potential for the prosthesis to break.
Because of the risks, Kaysen knew he would no longer be able to play baseball or run or jump. Still, he felt it was the right choice.
“I wanted to look normal with all my friends, even though it took the ability of me to run. I wanted to just fit in. I’m satisfied with my choice,” Kaysen said.
The metal prosthesis works with a magnet that allows his doctors to have control of expanding and lengthening it by millimeters. His right femur has been lengthened three times since the prosthesis was inserted.
“When he has significant growth, usually about every 6 months, and sometimes every month after 6 months, we expand the internal component. It’s an outpatient procedure without any cutting of the skin or muscles or bone. It’s all done externally. There’s no twisting of the ends of it,” Sato said.
Once Kaysen got the prosthesis, he had to learn to walk again.
“He was very determined to do his rehabilitation. Eight- to 12-year-olds are very difficult to motivate. Kaysen was different than that. He was 11 and motivated to do all his exercises and went above and beyond what we asked him to do,” Sato said.
He credits his inner athlete for helping him push through early morning physical therapy.
“It was all worth it in the end. I was a leader on the baseball team and it was always my job to keep a positive vibe and look for all the positive outcomes,” he said.
Although he’s no longer able to play team sports, Kaysen still occasionally shoots around with a basketball, bowls, and hits golf balls with his five siblings. He’s also the manager of his school’s basketball team.
Going through cancer gave him new perspective, though.
“What I’ve been through made me appreciate life 10 times more, and the little things in life, like [understanding that] there’s more to life than just sports,” Kaysen said.
Today, Kaysen is 14 years old. His cancer has been in remission for 2 years. He can walk without crutches or braces. Sato says his outlook from a functional standpoint is excellent.
“He’s had no evidence of disease. The longer he goes without any evidence of recurrence or long-term side effects of treatment, the better, but we certainly monitor him for those effects,” she said.
To celebrate his outcome and bring hope to others, Kaysen will be part of the 131st Rose Parade, themed “The Power of Hope,” on Jan. 1, 2020. He’ll ride on the City of Hope’s float along with nine other survivors.
“I really hope that I inspire people with my story, show them that anything is possible with the power of hope, and that no matter what you are going through, keep hope and a positive vibe, and surround yourself around positive energy,” Kaysen said.
His five siblings and parents will be cheering him on as spectators.
“I want to cry for all Kaysen has been through. He’s walking, living proof that this disease can be cured. He’s happy he can show himself to the world… [and that] there is medical technology now that can help,” Cindy said.
Cathy Cassata is a freelance writer who specializes in stories around health, mental health, and human behavior. She has a knack for writing with emotion and connecting with readers in an insightful and engaging way. Read more of her work here.