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Aaron Stone, Sclerosing Rhabdomyosarcoma

Posted: February 16, 2017

16 Years Old at Diagnosis.

Aaron Stone, Sclerosing RhabdomyosarcomaAaron was your typical 16-year-old – he loved sports, played the drums in a band, and was working as an umpire. In June 2015, he was having pain in his jaw, so he told us that he thought his wisdom teeth were coming in. Being the good mom that I am I said, “No, they aren’t, you are too young.”

Aaron insisted that something was going on, so we went to the dentist and then to an oral surgeon, who did a biopsy. One week later, he was diagnosed with Sclerosing rhabdomyosarcoma, a very rare sub group of rhabdomyosarcoma that is usually observed in adults. Our world was immediately turned upside down. We have a kid with cancer. Words cannot describe the emotions at that time – it is surreal.

We live in Fort Wayne, Indiana, so we had to decide where to seek surgery and medical treatment. We chose Chicago. The next day we traveled to Chicago to meet the surgeon who would do his surgery. She was very confident in her ability to get the entire tumor and in her team to rebuild his jaw. It was a moment of relief in the midst of this surreal experience happening to our son.

In August of 2015, Aaron underwent the extensive surgery to remove the tumor. In order to get to the tumor, they had to remove part of his jaw, so the jaw was rebuilt with his fibula. He spent 10 days in the hospital following surgery, and had to return for a second skin graft on his leg to aid in the healing process. It was a grueling recovery, but he handled it like a pro, always making jokes and laughing at every opportunity. Surgery was a success – clear margins and scans showed no signs of cancer.

By November of 2015 he was healed enough to begin a 40-week chemo regimen. It began with a rough start and by week four he ended up in the hospital for another four weeks due to complications from chemo. After the hospital stay, we decided that the travel back and forth to Chicago was getting too difficult for Aaron. We needed to be closer to home. So we transferred his care back to the pediatric oncologist in Fort Wayne. The Chicago doctors would continue to be involved, but all treatment would be in Fort Wayne.

Scans were done again, and there were no signs of cancer. Aaron had chemo treatments every week and was such a good sport, always joking and laughing with the nurses. His friends would come up to the hospital and they would have pizza and play video games. Aaron’s room was the party room.

Then in June 2016 Aaron began to have pain in his arm. Scans showed that he had a tumor on his humorous and pelvic bone, and a biopsy confirmed that the Sclerosing rhabdomyosarcoma had returned. He was a few weeks shy of completing chemo, and now he had to begin a different chemo regimen with the hopes of stopping the cancer and slowing down the growth of the current tumors. This was very discouraging because he was getting ready to start his senior year of high school.

Aaron Stone, Sclerosing RhabdomyosarcomaIn August of 2016, we noticed a swelling on the side of his temple and of course, our worst fears were confirmed – it was another tumor. By this time, we were beginning to predict the scan news by the look on the doctor’s face as he walked in the door. The next option for Aaron was a clinical trial using an immunotherapy drug. This was not without obstacles, as he developed a pneumothorax (collapsed lung) which required a hospital stay. After one cycle, scans showed more tumors, so he was taken out of the clinical trial.

Aaron’s standard response each time we hear that there are more tumors was, “OK, let’s move on to the next option.”

His next option was a targeted drug which he began in October 2016. We were told that this was the last option, as his cancer kept figuring out ways to continue to spread. This was the hardest news to handle, as Aaron could no longer say “what’s next?” Scans were done again January 6, 2016 and once again, we saw that familiar look. The cancer had spread and there were no more options. We were heartbroken.

Aaron is currently living with cancer, and he is working hard to reach his goal of graduating from high school. He has handled every obstacle thrown at him with grace, dignity and laughter, and for that, we are proud of him. We have chosen to follow our own path at this time and live every day to the fullest.

Aaron is a fighter, and that’s why we support CureSearch. We believe that organizations that actively look for a cure for childhood cancers are so important. No child should ever have to be told that there are no treatment options. It is not right, nor is it fair. Our kids are the future and the lack of dollars spent on childhood cancer research robs our children of their future.

We do not know what the future holds for Aaron, but I know I will always be an advocate for childhood cancer research.

Written by LouAnn Stone, Aaron’s mother

Update: March 2017

Aaron Stone, Sclerosing RhabdomyosarcomaAaron…Forever 18…Forever in our hearts

At the time I wrote Aaron’s superhero story, he was living with cancer – on March 12, 2017 he lost his battle with cancer.

In mid-February, Aaron began having trouble breathing and was admitted to hospice, only to discover that he had developed double pneumonia. He battled back and was then able to come home.

I remember when Aaron was young and I would wake him for daycare, he would say, “Mom. I am not done yet!” Well… Aaron was not done yet. He came home for about 2 weeks, and on March 12th he woke up telling me something was going on. I lovingly reassured him, knowing what was to come. He peacefully passed away later that day.

Aaron is our superhero – he approached every treatment with a smile on his face and his infectious laughter filled the room at every turn. Our hope and prayer is that stories like Aaron’s will inspire people to recognize that childhood cancer affects not only the child, but also those who love the superhero as well. Dollars spent on finding a cure for childhood cancer are essential, which is why I will continue to share Aaron’s story.


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Aaron Stone, Sclerosing Rhabdomyosarcoma was last modified: April 3rd, 2017 by Geoff Duncan

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