How I Almost Lost My Leg at 8 Years Old
This is why I call myself lucky.
By Joey Chamness, childhood cancer survivor
Sarcoma. This disease changed my life when I was a little boy and so in an attempt to raise awareness, I’d like to share my story.
Sarcomas are relatively rare, representing only 1–2% of all cancers. About 12,000 people a year in the U.S. are diagnosed with one. An interesting feature of sarcomas, however, is that it is more much common in children than adults. About 15% of all cancers in children under the age of 20 are sarcomas, between 1,500–1,700 U.S. children diagnosed per year. Still, with 73 million children in the U.S. in 2019, it is an uncommon occurrence for an American child.
In 2005, I became one of those statistics when I was diagnosed with a type of sarcoma found in bones called osteosarcoma. I had complained about leg pain while playing soccer. Knowing not many 8-year-olds complain about pain, my parents took me to my pediatrician.
This is one of the many points in my story where things could have gone wrong.
As we already covered, pediatric cancers are a rare occurrence, and my doctor could have just given my knee a look and sent me home. Thankfully, my pediatrician had the presence of mind to do an x-ray where a mass was discovered in my femur above my knee. After a biopsy, my parents' worst fears were confirmed. I had bone cancer.
I don’t have many memories from this time. My parents have told me when they sat me down to tell me I had cancer, I didn’t really understand it or have a reaction. In fact, I didn’t cry until they told me I was going to lose my hair, and according to my parents most of my questions revolved around how I could avoid that.
I soon found out losing my hair wouldn’t be the worst part of it. The tumor I had in my femur was very close to my knee, and doctors indicated my leg would have to be amputated above the knee. Above the knee, amputations don’t allow many functions compared to below the knee. To mitigate this, I was going to receive a rotationplasty, a type of surgery where they attach your foot backward to your thigh so your ankle can function as a knee. As an 8- year-old, the prospect of this was nearly as scary as having an above-the-knee amputation and prosthetic. But, I knew it gave me the best chance to live a relatively normal life. Having the function of my leg, so I could run and play basketball and do normal kid stuff with my twin brother Robbie and friends, was an immediate priority.
After about three months of chemo, I was ready to have my tumor removed.
Here is another part of my story where it could have gone a different way.
Luckily, I had parents who were willing to do everything to give me the best chance to survive and thrive, including finding the leading pediatric surgeon for osteosarcomas to treat me. My surgeon was able to remove roughly 6 inches of my femur and replace it with a cadaver bone. After another few months of chemo, I was officially cancer-free.
I wasn’t out of the woods yet though. It took me years of surgeries and rehab to get to where I am today, including another major 17-hour surgery when I was 10 to replace the cadaver bone which had failed.
These days I am able to play pickup basketball, tennis, wake surf, and pretty much any other activity that doesn’t require lots of running and doesn’t put me at a big risk of breaking my femur.
Out of those 1,500–1,700 children diagnosed in the U.S. per year, I can’t say my story is particularly unique. As a survivor, especially when I was a kid, people often told me how strong I was like I was the one that beat it. I can’t say I ever really believed that, and now that I’m older, I definitely don’t believe it. The truth is, I was incredibly lucky.
Lucky to have a pediatrician who helped diagnose my cancer at an early stage, lucky to have my chemo work and effectively kill my tumor, lucky to have one of the best pediatric orthopedic surgeons in the world treating me, and lucky to have the family and friends support me along the way. Above all else, I’m lucky to live in the time I do. If I had been diagnosed in the ’70s, I probably would have had my leg amputated and maybe lost my life.
That’s why we need to fund childhood cancer research to support advances that will lead to more cures and better treatments. There isn’t much money to be had for big corporations researching diseases like osteosarcoma. It’s simply not profitable. It’s up to people like us to raise awareness, donate, and if you are really feeling it, maybe even shave your head, to give children like me the best possible outcomes. It’s hard to believe everything I can do now. I hope the children diagnosed today have even better outcomes, but there’s more work to be done and up to us all to move progress forward.
Learn how you can help conquer childhood cancers and support the best research to find cures for all childhood cancers. Visit StBaldricks.org.