In the summer of 2018, James Charles was a teenager working his first job at a ranch in Florence, Texas. A pain in his knee grew from a distraction to unmanageable pain. By the time a few weeks had passed, getting out of bed had become a struggle. James’ father took him to an urgent care clinic and all James could think about was hoping he would soon be able to return to work.
The results were so unexpected that the doctor drove from the urgent care clinic to James’ grandparents’ house to deliver the news: James had osteosarcoma. “My mind was immediately flooded with questions like, ‘What do we do now?,’ Am I going to die?,’ and ‘Am I going to lose my leg?’”, James remembers. “My mother, father, and my Nonnie and Papa all came to comfort me. I could see the heartbreak in their eyes. I couldn’t even comprehend what had been said.”
Two weeks after receiving his diagnosis, James started his first week of chemotherapy. The side effects made him so fatigued that he slept 22 hours a day, so James consulted with his oncologist who adjusted his regimen in the hopes of having fewer side effects. “
Life under chemotherapy—spending days in a hospital, being isolated, and having low energy-took some adjustment. James’ parents made the 45-minute commute to see him every day, but James still had to deal with loneliness as his friends started high school without him. “I lost touch with about 95% of the people I used to talk to, but the 5% who stayed were always there by my side when I needed them,” James says.
A few months after starting chemotherapy, James had his first major surgery to remove the tumor in his femur as well as his knee. Not being able to walk gave James a newfound appreciation for the difficulties of navigating typical housing in a wheelchair.
In March 2019 James rang the bell to signal the end of eight months of treatment. “I was so excited and eager to actually get to school and go back to having a kind of normal life!,” James says. Unfortunately, less than a year later, James was experiencing a new form of isolation–this time from the lockdown of the COVID-19 pandemic.
In May 2020, a routine scan during the early months of COVID-induced lockdown revealed a relapse in James’ left lung. James underwent surgery on both lungs, spending most of his time in the hospital to recover and undergo an additional two rounds of therapy.
“When I rang the bell the first time, I thought that would be it, I would move on with my life and have a story to tell,” James says. “Despite the cruddy circumstances, I still managed to enjoy my time there on the days I could.”
James rang the bell to signal the end of his second round of treatment on December 5, 2020. Ready to move forward, he went on a cross-country trip with a friend, got a tattoo, and was looking forward to a normal life.
A year later, in December 2021, he received news of another relapse in his right lung. James and his family spoke with his doctor, hoping to learn more about his treatment plan. Instead, his doctor asked James and his family how they wanted to proceed. Talking to his doctor, there was no clear treatment protocol for this stage of his recurrence. “That certainly complicated things and made it difficult to decide what to do,” James says.
James and his family sought more medical advice and decided on an immunotherapy clinical trial. James also enrolled in an alternative high school where he was only required to be in person twice a month. James completed his clinical trial on February 2, 2022—two days before his 19th birthday.
Fifteen minutes after James proudly rang the bell signaling the end of his treatment, his doctor brought him the news that a new nodule was found in his lung. James reacted to the news with a combination of fear and resignation. “Have you ever watched one of those jumps scare videos? Imagine watching the same exact one over and over again. Eventually, it’s not scary anymore and it is just annoying.”
James enrolled in a different clinical trial, only to experience crippling depression that he later found was a side effect of the trial medication. “I am still recovering from it almost two years later,” James says.
James withdrew from the trial and underwent another surgery to remove the nodule. This time, he went through his longest remission to date. In that time, James graduated high school, became a volunteer firefighter, and enrolled in school to become an emergency medical technician (EMT). Partway through EMT school, James began experiencing chest pain. Doctors found a 5.5 cm nodule in his lung–the largest one they had found so far.
James continues to search for clinical trials and aggressive treatment approaches with the hope of entering remission and staying there. He shares his story to raise awareness and to highlight the need for more and better treatment options for sarcoma patients.
