Stories about: Ewing Sarcoma

Cancer or no cancer — Carlie will sing!

Her voice at first sings softly, then gradually gains intensity and rises to a crescendo as she belts out the refrain of a tune she and her dad co-wrote: “You’re not standing alone!”

Fifteen-year-old Carlie Gonzalez has been singing and making music for as long as she can remember. But these days singing has new meaning. After eight months of intensive treatment for Ewing sarcoma, a type of bone cancer, her powerful voice is also a symbol of her physical and emotional strength.

Three weeks after school started in September 2015, Carlie began to feel a pain in her collarbone. Since she also played volleyball, when an X-ray showed nothing, the doctor suggested the pain was likely something minor, caused by sport. Carlie’s mom, Julie, wasn’t convinced. They sought a second opinion at another hospital, and this time discovered Carlie had a tumor in her clavicle (collarbone).

They immediately sought care at Dana-Farber/Boston Children’s. On Oct. 12, Carlie began a grueling chemotherapy regimen — infusions five times a week for a week, followed by a week off — a cycle that continued for eight months. She also had surgery Jan. 8. Finally, on May 21, she received her last chemotherapy infusion.

“I used to sing for literally hours at a time,” notes Carlie. And not quiet tunes either — but truly powerful songs ranging from pop/rock to gospel. “Right now my voice isn’t quite as strong,” Carlie claims. “But it’s coming back.” On this late-July day, her voice sounds remarkably robust.

In fact, throughout treatment, Carlie never stopped singing. She had plenty of tired days, when she couldn’t muster energy to belt out tunes. But on the good days, she’d be back on the keyboard and testing her voice again. And throughout treatment she continued live performances, singing at church, fundraisers and other live events.

Throughout this journey, she hasn’t hidden the visible effects of her treatment. She always bared her bald head proudly. And these days, she often chooses outfits that show off her dual scars — one on her collar bone from the surgery and the other on her upper chest from the port (a central line used for chemotherapy infusions, blood transfusions and more).

ewing sarcoma

Carlie was never too bothered when people gazed at her bald head or scars. And yet, she also always has wanted people to look beyond that — to know that she’s much more than her cancer diagnosis. Here’s what Carlie would like people to see in her: She is a singer and a musician; music is a fundamental part of her life and always will be.

September is Childhood Cancer Awareness Month — and this month, Carlie and other children at Dana-Farber/Boston Children’s are sharing this message: We are more than you see. Don’t focus on the side effects of our treatment — see who we really are.

Learn more, see more stories, and join the campaign at DanaFarberBostonChildrens.org/MoreThanYouSee.

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Kids with cancer make “Fight Song” their fight song with new music video

Led by two teenaged patients, the kids in the outpatient clinic of Dana-Farber/Boston Children’s Cancer and Blood Disorders Center infused the place with levity earlier this month and made Rachel Platten’s “Fight Song” their fight song in a lively music video.

The idea came from Maddie Carlson, a 16-year-old Goffstown, NH, girl being treated for Ewing sarcoma, a bone cancer.

“I wanted to do something in the clinic that would be fun for me and the kids and give me a reason to get up every morning and go get chemotherapy,” Maddie says. “People always listen to the song and say it reminds them of me, and it reminds me of all the kids there.”

Eva Bod, a 17-year-old Newton, MA, girl with Hodgkin lymphoma, assisted.

She and Maddie have been friends since a Dana-Farber/Boston Children’s teen trip to see the Red Sox at Fenway Park in August. “We clicked the second we got on the bus,” Eva says. “It was the trip of a lifetime. For the first time, I was able to talk to kids about what I was going through.”

A week in the making, the music video has already attracted thousands of views.

“It does a good job of showing how courage comes in different sizes,” says Eva. “I want the hope to be shared.”

“Everyone’s saying it puts a smile on their face,” says Maddie.

Does it put a smile on her face? “Definitely.”

Learn more about Dana-Farber/Boston Children’s Just for Teens Program.

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The many faces of childhood cancer: Fernando Morales

Fernando Morales is a student athlete. Last year he was sidelined from the life he knew after he was diagnosed with Ewing sarcoma. Now done with treatment Fernando is back with his teammates, sporting a positive outlook and a new appreciation for life. This is his story. 

Fernando

As a soccer player and member of the track and field team at my high school, running is a big part of my life. But one morning I started getting shooting pains in my knee. All of a sudden walking and running became very difficult. In the blink of an eye I lost a big part of my identity, which hurt almost as much as my leg. Almost.

I saw a doctor who put me on a physical therapy regimen and took X-rays of my knee. When that didn’t seem to help I underwent Magnetic Resonance Imaging (MRI) to see what the problem was and why it wasn’t getting better. The MRI results said it all: a tumor was growing in my right pelvis.

Less than a week later my parents and I were driving to the Dana-Farber/Children’s Hospital Cancer Center (DF/CHCC). There were so many questions floating around my head. Would I need surgery? Would I ever play sports again? Was I going to live? If you compared my sanity to a dam, the pressure in my head was building towards dangerous levels. The walls were starting to crack.

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