Proton Therapy for Ewing Sarcoma: Carly’s Story

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The first sign that something might be wrong appeared in October 2015. Carly was celebrating her 14th birthday with a trip to New York, and after three days of walking around the city she complained to her mom that her back was hurting.

Carly smiling leaning on wallThe pain would come and go, but kept getting worse. By February, it was bad enough that it sent Carly to the emergency room at the hospital near her home in Virginia. Two more ER visits and two more months later, and still a cause had not been found. Carly was in so much pain she couldn’t feel her legs. It was a physical therapist she’d been referred to who noticed the bump in her back, and recommended she get an MRI as soon as possible.

Two days later, on April 6, 2016, Carly learned she had cancer. “They did a biopsy and then some more MRIs and found nine initial tumors in my spine, hips and pelvis. It was metastatic Ewing sarcoma.”

Teenager turned cancer patient

“It was strange,” says Carly. “At the time, I didn't know what to think. It wasn't until a couple of weeks later that it finally hit me. I had to go through the grieving process. I didn't realize grieving applied to cancer and sickness.”

Carly’s treatment would be aggressive, including intense chemotherapy to get her disease under control, and proton radiation to deliver targeted treatment to each tumor site. She would undergo 14 cycles of chemotherapy and two courses of radiation.

The first cycle of chemotherapy started right away, at a hospital near home. “One round and my hair started falling out,” says Carly. “We had to take a family picture the next day, but as soon as it was done I started pulling my hair out and throwing it out the car window while we drove.”

Proton therapy for Ewing sarcoma

For proton therapy, Carly and her mom, Krista, came to Children’s Hospital of Philadelphia (CHOP). Proton therapy is used to treat Ewing sarcoma, and many other types of cancer, because it delivers radiation directly to the tumors, minimizing damage to surrounding healthy tissue. Carly chose CHOP for her proton therapy because it offers one of the most established and experienced pediatric proton therapy programs in the country.

They spent two months in Philadelphia, where Carly continued chemotherapy and received proton therapy five days a week to her primary tumor site. Then it was back to Virginia for more chemotherapy, and finally back to CHOP in January 2017 for proton therapy and stereotactic body radiation therapy (SBRT) to her metastatic sites. SBRT delivers very high doses of radiation, using several beams of various intensities aimed at different angles to precisely target the tumors.

For both rounds of proton therapy, Carly and her mom stayed at the Ronald McDonald House in West Philadelphia. It’s a five-minute drive from CHOP, and Carly and her mom found comfort in being surrounded by other families who they could laugh with, and cry with if they needed to.

“My radiation techs and doctors always took such good care of me,” says Carly. “The child life specialists always made me feel loved and welcome. The clinic was a really safe place for me while I was going through something so scary.”

“I love CHOP,” says Carly. “They've been fantastic. I even got an ‘I heart CHOP’ shirt!”

A new perspective

Carly has been through a lot. Infections, fevers, reactions to medications, long inpatient stays, and months of missing out on school and friends. When she was in treatment, she felt awful, and “chemo brain” made it difficult to get things done. But her positivity has persisted through it all. She’s funny and smiley, and seems wise beyond her 15 years. Today, her scans are clear, and she recognizes how much she’s grown as a result of what she’s been through.

“My perspective on life has changed,” she says. “I used to worry like a normal teenager about homework due tomorrow, and now I'm worrying for my life. It's not a bad perspective to have, what's really important in life. It took time to get there. I had to first accept the fact that I had cancer. It was scary and really difficult to admit to myself that this is OK, as horrible as it is. Right now and right here, I'm OK.”

Her advice to other cancer patients who are at the beginning of their journey is this: “It'll get better. Especially at the beginning of a diagnosis it's really, really difficult. It's almost like you get used to having cancer. All you can do is stay positive about everything.”

For now, Carly is throwing her energy into her hobbies, like piano and ukulele. And an obsession with makeup has replaced her former love of doing her hair. “My eyebrows look better now than they ever did,” she says.

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