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One of the triumphs of modern medicine is that children diagnosed with cancer today have an 85% chance of surviving at least five years. That is up from a rate of about half a generation ago. But survival brings with it new challenges, like making up for lost schooling that can ripple through a child's social life and career development. NPR's Yuki Noguchi has this story as part of her series called Life After Diagnosis.
YUKI NOGUCHI, BYLINE: EJ Beck at 10 looked like a bookish Tinker Bell, with soft brown hair and inquisitive almond eyes.
EJ BECK: Always a little bit of an old soul.
NOGUCHI: That's when a thyroid cancer began bulging from her tiny neck. It took her joyful school routines and replaced them with a difficult surgery, followed by harrowing radiation treatment in an isolation chamber.
BECK: These big guys in hazmat suits approach you, and they've got this, like, metal container. And you're like, wait. If it's so toxic that you guys can't even be in the room with it, why am I putting that into my body?
NOGUCHI: The pill from that hissing container made her so sick and radioactive, she remained without human contact for many, many days. Beck, with her parents, had decided not to tell friends, teachers or even her two younger sisters about her illness. They hoped it would help her slip back into normal life eventually. But in the moment, it made the isolation more intense. She spent that lonely eternity rereading the "Harry Potter" series and drawing on a picture of Spider-Man posted to the window.
BECK: I was so jealous because Spider-Man could just leave the hospital, and I couldn't. And Spider-Man got to take radiation, and he got cool powers, and instead I got sick and sad and lonely and tired.
NOGUCHI: Today, Beck is 23 but still lives in the shadow of that experience - quite literally, in one sense.
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NOGUCHI: Her apartment is within earshot of constant sirens near the New York City hospital where she received treatment. Beck says cancer forged her into who she is. It also left her feeling scholastically, socially and emotionally out of step with peers for years.
BECK: It takes a really long time to feel like you're falling into sync with everybody else. Even if you would make it onto college and you're in college with everyone else, you kind of feel like you're marching to a slightly different beat, and you're trying really hard to keep up.
NOGUCHI: These are some of the less-discussed after-effects of outliving cancer. The loss of routine, identity and peer support, not to mention the cognitive and physical impacts of treatment, deeply shape survivorship. Patients often feel forgotten when treatment ends, and research shows the knock-on effects, from mental health to financial challenges, can persist for decades. Doctors and parents tend to focus, understandably, on the medical demands of pediatric cancer. But Julia Gomez says, for kids, the loss of normalcy of school hits harder.
JULIA GOMEZ: It's quite devastating.
NOGUCHI: Gomez is an education coordinator at NYU Langone's medical system. It's a new type of job at select cancer centers to help young patients remain connected to school. Gomez helps parents navigate dizzying bureaucracies so students can receive home tutoring, for example.
GOMEZ: If she or he needs a new evaluation - that those are completed. If they need an IEP, that gets done. A 504 accommodation...
NOGUCHI: Even if kids can remain in school, they often feel marked. EJ Beck, for example, continued attending class through periods of treatment. But her restrictive diet meant she couldn't eat school lunch.
BECK: I had this girl - I'll never forget it. She would come up to me and say, you're really bullying everyone else because you're so skinny and you're dieting. So you're saying that the rest of us are fat.
NOGUCHI: Beck swallowed her explanation to keep her cancer a secret.
BECK: Once people know, they never look at you the same way.
NOGUCHI: Still, Beck felt lucky. She didn't lose her hair. She could conceal her cancer.
BECK: I had the privilege of somebody whose cancer was never going to be as visible on me as it is on the majority of cancer patients.
BRENDAN HARLEY: My senior picture - no, it was terrible. My hair started coming back in, but then I was taking so much prednisone, my face got all swollen up.
NOGUCHI: Brendan Harley landed in the hospital in 1995 the night before his SAT exam. He was diagnosed with acute leukemia at 17.
HARLEY: I had to call my date for the junior prom, which was the next weekend, and say, sorry, I'm not going to be there. And I was then gone.
NOGUCHI: Gone for a full year. This was before cellphones and social media, so Harley's isolation felt complete.
HARLEY: I was effectively living in a bubble at home. My middle brother would carry my homework into school and bring back a stack of homework for me to work on. I'd have a tutor that showed up once a week, and we would sit masked and gloved on different sides of the room and talk.
NOGUCHI: Bald and tired, Harley studied frantically from his hospital bed, clinging to school work like it was a handhold on life.
HARLEY: And then I got out and went right to take my exams in June. And I couldn't remember any things that I was studying because of all the chemotherapy.
NOGUCHI: But, says Harley, returning home after feeling so vulnerable made him more determined to live.
HARLEY: You know, driving up my street, I was like, there's green everywhere. And I know there's always been green everywhere, but it was like I saw it for the first time. I had made it back, right? To this day, I can't forget.
NOGUCHI: Three decades later, Harley's cancer-free and a father of two. He's also a biomedical engineer at the University of Illinois, fighting cancer on a different front. He makes models of tumors to help design treatments that better target cancers and also improve the quality of life afterward.
HARLEY: And how can I make it so that the next generation goes through something different?
NOGUCHI: Meanwhile, back in New York, EJ Beck is also exacting her revenge on cancer. This fall, she started medical school at the teaching hospital where she'd received treatment at age 10.
BECK: To walk through the doors of the hospital, to me, I almost feel like I can see the younger version of myself standing next to me in such a different place in her life. To be here - I mean, I can't even tell you how emotional I got when I was accepted to NYU.
NOGUCHI: Cancer stole much of her childhood, she says, but it also set her on a mission to give back to a field that's given her so much.
Yuki Noguchi, NPR News.
(SOUNDBITE OF JORJA SMITH SONG, "GREATEST GIFT") Transcript provided by NPR, Copyright NPR.
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