Why Siblings of Childhood Cancer Need A Space Of Their Own

CEO & Co-Founder Erin Fletcher Stern shares why brothers and sisters of cancer survivors need Sibling Camp and a space of their own

Even all these years later, there’s this one moment from our second Overnight Camp back in 2016 that has always stuck in the back of my mind.

One of our returning campers was being dropped off by her family to take the bus to camp. She (understandably) started feeling a little nervous, hesitating to board.

As her mom and I chatted with her, trying to ease her nerves, her sister eagerly popped out from behind her. “I’ll go!!! She can go home, and I’LL go to camp!”

After a year of hearing all of the fun stories from our first camp session, her sister wanted desperately to join in on the fun. And I wanted more than anything to tell her to hop on the bus and join us. I knew in that moment that we absolutely had to figure out how to create a special experience just for siblings.

Cancer Affects Every Member Of The Family

The reality is that cancer affects every member of the household, not just the patient. A study on the impact of pediatric cancer by Erker et al. (2018) found that siblings of children going through cancer treatment reported worse family relationships than the patients themselves. In an earlier study by Houtzager et al. (2004), siblings of children who had completed cancer treatment were shown to continue to exhibit behavioral and emotional challenges even two years after treatment ended. Further, the risk of these challenges increase when other factors are considered, such as the child on treatment receiving a bone marrow transplant from the sibling.

We see this anecdotally, too, in our camp families over the years. The sister who so badly wanted to join us back in 2016 was struggling with PTSD she developed as her sister went through cancer treatments. It’s painfully clear that siblings of children who have had cancer need support, too, to help the entire family begin to heal.

The Spotlight’s On Them

During treatment, the patient gets a lot of attention, understandably. They are fighting for their life, undergoing brutal treatments, and facing some serious life-or-death situations no child should ever have to think about. Families have to structure their life around cancer treatment, which can last years. Plans and priorities change. Important life events like vacations or family reunions may get postponed. Christmas might be spent in the hospital. Some families even move in order to be closer to a clinic, or a particular specialist, who might be able to help.

For a brother or sister, growing up in this environment can kind of make you feel like the world revolves around the child fighting cancer. Your wants and needs may have to be placed on the back burner, by necessity. (Same goes for the wants and needs of parents, too, but that’s a story for another day).

That’s why it was so important to us to take the time to develop a special experience just for the brothers and sisters of kids who have been diagnosed with cancer. At One Mission’s Sibling Retreat, it’s our goal to roll out the red carpet for every brother or sister who has watched a sibling go through cancer.

We want them to feel special, to feel seen, to feel like the star of the show. We train our camp counselors not to ask about their sibling with cancer unless our camper wants to share. We know that while some kids seriously need to vent, others really benefit from having a few days when they can just forget about cancer entirely, so we follow the lead of each kid and their personal comfort level.

This is the time to focus completely on them.

The Power of Community

Imagine that you’re a kid, and your family is moving to a new state to be able to access better care for your brother. You don’t want to move. What about your friends, or prom, or the school play you just tried out for? It can be hard to not feel resentful that your life is changing in such a huge way, even when you know it’s the right (or only) option.

In a less extreme example, brothers and sisters might notice their sibling with childhood cancer getting a lot of special treatment: they come home with brand-new toys, they get access to unique experiences, everyone is so worried about them, mom gets them anything they want to eat (especially since it might be all they can keep down). Wouldn’t you feel a little envious?

These feelings are heavy, and hard to navigate, especially for a child. Given that pediatric cancer is fairly rare, our siblings may not have many friends who understand what these challenges are like. It can be hard to vent to a parent who’s also probably dealing with a lot. Where do you turn?

At One Mission’s Sibling Retreat, there are no cancer patients allowed. It’s a space to meet other kids who have been through the same thing, who understand the complicated feelings that come with watching your sister fight for her life as a child yourself. There is truly nothing like the healing power of being in the company of others who get it— where it’s okay to feel this way and let it out.

We are so grateful to have found a partner in One Mission who truly understands the importance of supporting our siblings, and beyond proud to have finally seen this dream come to fruition at our powerful first camp session in 2022. We can’t wait to make this year’s Retreat even better.

Click here to register a sibling for our 2023 One Mission’s Sibling Retreat in Hinsdale, MA, or check out this link to learn more about volunteering with some truly incredible kids.