The struggles faced by the siblings of cancer survivors are often overlooked : NPR

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More than 85,000 adolescents and young adults in the U.S. are diagnosed with cancer each year. There are support groups for these young patients and for their parents, but what’s out there for the siblings? NPR’s Claire Murashima decided to find out.

CLAIRE MURASHIMA, BYLINE: Kayla Crum is two years older than her sister, Ella Beckett. But growing up, Kayla says she sometimes felt like Ella was ahead of her.

KAYLA CRUM: I remember she taught me how to French braid (laughter). And I was, like, feeling like that should have been my job as the older sister. I actually grew up with quite a bit of jealousy for my sister. She was naturally gifted at school, at ballet, at athletics. And I was, like, decently good at those things.

MURASHIMA: Kayla says those feelings didn’t change even after Ella turned 18 and was diagnosed with Hodgkin’s lymphoma. And Ella, she says she knows it’s not just hard on her, but on those around her.

ELLA BECKETT: When you’re diagnosed with cancer, you know that it’s about to blow up all the people who love you’s world, too. I really struggled with feeling super guilty because, like, I knew I was the reason that Kayla and my parents were, like, having this really difficult time.

MURASHIMA: Kayla says she thought her sister’s cancer would bring them together but instead, her sister seemed withdrawn and grumpy.

CRUM: I had all these visions of us having these deep talks and, like, supporting each other through it. But I had to put in hours of just presence to get maybe, you know, a 15-minute conversation that was healing for us.

MURASHIMA: And Kayla says she also struggled to find people to support her own needs.

CRUM: Cancer is obviously an earth-shattering diagnosis. I will always think it’s been hardest on Ella. And yet, it’s probably been the hardest thing I’ve ever experienced in my own life as well.

MURASHIMA: Kayla says she felt guilty complaining about little things.

CRUM: How dare I even let myself wallow or feel sad about a knee injury that has put me on the couch for a while or a setback at work? And it got to the point where I just felt, in college, like, do I need to have a public, like, crying breakdown to get some support?

MURASHIMA: Kristin Long is an associate professor at Boston University. She calls siblings of kids with cancer shadow survivors because they often get the trauma but not the support.

KRISTIN LONG: They have the urge to protect the people around them, and so they tend to keep this all inside. They try to reduce family stress by doing everything as perfect as they can.

MURASHIMA: Long’s research also found that siblings of kids with cancer are at a higher risk of post-traumatic stress, even more so than the patient. They could have nightmares or constantly be on high alert.

LONG: Almost three-quarters of siblings report that these symptoms interfere with their functioning in some way.

MURASHIMA: And Long says if kids are struggling, don’t blame the parents, blame the system.

LONG: Siblings are often not in the health care center. And when they are there, it’s often on evenings or weekends, when staff aren’t there.

MURASHIMA: She says that if services aren’t fully utilized, they can easily be cut. Ella has been cancer-free for five years. And Kayla, she says she’s still working through the emotional residue.

CRUM: I don’t know if jealous is the word anymore, but my parents and other people in our life treat Ella now with such tenderness. And it’s not something that I think about every day or that I actively resent. But it’s definitely something that happened, and it changed how everyone acts toward her forever.

MURASHIMA: Earlier this year, Kayla and Ella started a podcast called “My Sister’s Cancer.” And in November, Professor Long will host a convention for siblings like them in Chicago.

Claire Murashima, NPR News.

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