Clarkston Teen Shows Courage in the Face of Rare Ewing Sarcoma Diagnosis

Health and Wellness,Physical Health,Children's Health,Health Conditions,Member Stories

Clarkston Teen Shows Courage in the Face of Rare Ewing Sarcoma Diagnosis

07.29.2024 | 5 min read

Summers in your early teens are supposed to be about hanging out with friends, riding bikes, playing sports and going to places like Cedar Point or Six Flags with your family. Clarkston 14-year-old Nolan Crockett will spend his summer fighting Ewing Sarcoma, a rare bone tumor that accounts for approximately 2% of all U.S. childhood cancer diagnoses.

“Everything happened really fast,” said Nolan’s mother, Dione, a Blue Cross Blue Shield of Michigan (BCBSM) member. “Nolan started noticing symptoms in the beginning of May.”

Nolan’s symptoms included a nagging cough and unusual fatigue. He eventually missed a few days of school and suggested visiting a doctor. The day after Mother’s Day is when the Crockett’s family nightmare began.

“On May 13, we realized something was serious when we were at the pediatrician’s office,” explained Dione, a mother of two.

Nolan’s strep throat test was negative, at which time, a chest X-Ray for pneumonia was taken at a nearby hospital.

“After the X-ray, it was one of those moments that was really surreal,” she said. “The technician pulled us into another room. That’s never a good sign. So, I had an idea that it was something serious, just by the look on her face. You could tell it wasn’t pneumonia or something that was easily treatable.”

Treatment for Nolan’s Ewing Sarcoma

Nolan’s Ewing Sarcoma diagnosis came about a week later and treatment soon followed. It’s a disease that most often occurs in adolescents. Ewing sarcoma tumors are usually aggressive and can metastasize to other areas of the body, especially to other bones and the lungs.

Dione said she considers the family lucky to have caught the cancer in its early stages. According to the American Cancer Society, the overall five-year survival rate for localized Ewing sarcoma is 70%.

“The treatment’s been the biggest cause of symptoms,” said Nolan, whose tumor is in his chest. “Increased nausea, loss of appetite. And not feeling good in general.”

Since May 13, Nolan and Dione have been in and out of the hospital for follow-ups, labs, scans and treatment. Nolan is currently a few weeks into first-line chemotherapy treatment. He alternates between two-day and five-day chemo sessions.

“It feels like we are in the hospital more than we are at home,” Dione said.

Nolan’s oncologist said the family should expect nine to 12 months of treatment overall.

“He’s also going to receive surgery and radiation next year, followed by more chemotherapy,” she added.

The abrupt nature of Nolan’s Ewing Sarcoma has made for a whirlwind two months for the family. As Dione scrambled to learn more about the rare bone disease, she was at least relieved to receive helpful guidance from her insurance company.

“I feel really lucky that we are with Blue Cross,” she said. “One of the things that surprised me is, almost immediately upon Nolan’s diagnosis we received a phone call from Rachel. She’s a nurse who asked if we needed help with transportation, getting to appointments. I actually did have some questions about second opinions and how that works through the insurance company, and she’s been wonderful. Actually, I think I just got a text message from her a couple days ago. She does follow up with me every single week.”

“I can’t even think of a time where he’s complained.”

Flanked at his Clarkston home by his two small dogs, Jack-Jack and Max, Nolan didn’t appear rattled by his sudden cancer diagnosis. He talked about his hometown Detroit Lions and some of his favorite players.

“I’m a big Lions fan,” he said, before having an internal debate on his favorite player. After a brief pause, he listed two names. “(Sam) LaPorta and Amon-Ra St. Brown.”

Nolan plays flag football and soccer, two sports he’s excited to resume playing. More than anything, he just wants to get past this nine-to-12-month period and get back to normal.

“Some of the hardest things I’ve had to go through with treatment is just having to go to the hospital or having to stay at night. Five nights at the hospital, constantly having a doctor check on you,” he said. “Having treatment that does not make you feel good. I’m looking forward to just going back to normal life.”

Watching her son struggle physically through a condition that no young teen should have to struggle through, Dione has been blown away by Nolan’s courage.

“I can’t even think of a time where he’s complained, which I think is amazing,” Dione said. “I feel like most adults in his situation would probably be feeling really sorry for themselves and complaining. I’m so very, very proud of him.”

Ewing sarcoma doesn’t have an exact cause and the underlying cell type has not been identified. According to the National Organization for Rare Disorders, most cases are thought to occur randomly.

“It’s not hereditary, it’s not environmental or (affected by) lifestyle,” Dione said. That’s why we were so shocked. There’s nothing you can screen for.”

Family, friends and neighbors have stepped up to help Nolan and Dione as they navigate the Ewing Sarcoma diagnosis. Each gesture has meant a lot to the family.

“We’ve been so blessed with so many stepping forward and offering to help out, whether it’s help taking out the trash or helping with our dogs, or bringing over meals,” Dione said. “Sending Nolan goodies or gift cards or games to play while he’s in the hospital. We do feel very blessed in that regard. It feels like we’ve had hundreds of people step forward and we’re so, so thankful.”

Nolan appreciates the support, too. Since everything changed in May, he’s demonstrated a brave attitude beyond his years. He’s ready to win this fight and maybe take a trip to Six Flags in the summer of 2025.

“There are some good things that will come out of this,” he said. “I know how much people actually care about me. I will be stronger coming out of such a tough thing.”

Those interested in helping Nolan beat Ewing Sarcoma can donate to his GoFundMe page at this link.

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Photo credit: Dione Crockett