You know the feeling. That prickly, almost unbearable feeling we get when we’re mad at someone we love, maybe a friend, a spouse, or parent or child. They’ve done something irritating, perhaps accidentally, perhaps not. Either way, they’ve frayed our nerves, disrupted the flow of our life, and spoiled our happy state. Unlike with a stranger, our upset at this person we love so much eats away at us until we either talk about how we’re feeling or we explode. Magnify all of that by about 3,000% and that’s what it’s like being the sibling of a child with cancer.
Sometimes referred to as “shadow children,” the healthy brothers and sisters of children with a life-threatening disease often experience a variety of feelings in the wake of their sibling’s diagnosis. At one time or another they may experience fear, jealousy, guilt, confusion, and anger. All of these feelings are completely normal, particularly considering the major shift that occurs in families when parents must focus the majority of their attention on the sick child. Add to the mix the pre-diagnosis state of the sibling relationship (tight-knit, reluctant playmate, near strangers) and negative feelings become ripe for misinterpretation. When siblings—and even parents—don’t realize what the healthy child is feeling is normal, they beat themselves up over it.
According to Lori Keleman, RN and long-time Camp counselor, it is critically important to give kids the space and time they need to talk about and work through their heavy feelings. “It helps release the pressure building up inside.” As the co-founder of Camp Reach for the Sky’s SIBS Camp and facilitator of “Talk Time,” a set space separate from normal camp activities where campers can share their stories, Keleman has seen the overwhelmingly positive effects of allowing kids to open up, at their own pace, and talk about their experience. In fact, she says sharing with peers is particularly important because “a lot of times they don’t know what they’re feeling until somebody else says it.”
For the younger child who believed she caused her brother’s cancer because she silently wished him dead after a squabble, or the teenager who struggles, years later, with feelings of extreme guilt for the resentment he harbors over the loss of his parent’s attention as a child, talking about their experience brings tremendous relief. At SIBS Camp, kids feel heard and validated in an accepting environment. There may be no better balm for healing the emotional wounds cancer causes these healthy siblings, says Keleman.
“You have to leave because he has to throw up but he doesn’t want to do it in front of you,” their mom announced abruptly one day when visiting Carlee’s brother, Vince, in the hospital. He was suffering the infamously harsh effects of chemotherapy, administered to eradicate osteosarcoma, which he was diagnosed with the summer before sixth grade. Thankfully, Vince remains cancer free today.
Carlee shares the experience of learning about her brother’s cancer diagnosis:
It was the first time I had ever even heard about cancer. Since I didn’t know that much, my parents said he was going to be taking medicine to help him heal, but there is a possibility that the disease might kill him. My brother and I were never really close, but hearing that this could take him away was a shock. I was shocked that an illness like this even existed. My family had never had anything serious happen to us up to that point.
Before Vince got sick, Carlee says their relationship was pretty typical of a brother and sister in that they didn’t hang out very much. In hindsight, she sees more clearly why they struggled to connect when they were younger:
As a kid all the shows I’d watch always had the protective older brother in it, which I wanted. So at the time I was always trying to make [Vince] be that. But he was really into baseball and it’s the one sport I can’t stand. So he couldn’t understand why I didn’t like this sport that he loved, and I was trying to make the relationship something I had seen in different movies. I didn’t realize then that I probably should have just played baseball with him if I wanted the relationship to work.
Carlee says she and her brother got closer when he was going through treatment. She credits this to both of them having the freedom to have their own space. For instance, Vince could stay in his hospital room if he wasn’t feeling well and she could roam around the hospital with her mom or the child life specialist, talking to other kids, making crafts, or playing in the game room. She also credits the strengthening of their sibling bond to hanging out and playing video games in the hospital, and the effort she made to not complain as much when she’d lose. “I think I probably was trying to make it easier for him by not being as annoying.”
Josh recalls having a pretty close bond with his younger brother Jared before Jared was diagnosed with leukemia. But once Jared was diagnosed, things changed. “After he was diagnosed, we couldn’t wrestle and play… We had to be a lot more cautious because he had a central line in his chest.” Josh says that when they were going through the process (diagnosis, treatment), it overwhelmed them both. “I feel like our bond was interrupted.”
Careful to point out that their bond has since been restored, Josh admits cancer took a real toll on the entire family when they were in the thick of it:
Even though only my brother had cancer, it had a huge impact on all of us. We didn’t get an easy way out. We all took a hit from it. …I was alone a lot of the time when [Jared] was first in the hospital. I was pretty independent at that time. Life was kind of a mess then. I stressed out with school and stuff. I’ve never struggled in school, but during sixth grade I definitely did because of what was going on.
Today, Josh has a matter-of-fact view of the experience of watching his brother go through cancer: “Everything happened the way it happened and you have to accept that. There’s nothing I could have done that could have changed the outcome of what happened.”
When she was just three, her brother Enrique (five at the time) was diagnosed with leukemia. Because she was so young, Stephanie didn’t understand much about her brother’s illness other than he was always sick and in the hospital. Except for a brief period when he was 11, Enrique continued fighting cancer until his death in 2009. He was 13 years old.
Stephanie shares her experience of her brother’s cancer:
[My brother] basically lived at the hospital. I remember if I was in the hospital visiting him, I would be in a playroom for the kids and everything. My mom and dad were with him a lot. They were together then. They split up when I was about five. …I knew he had cancer, but didn’t think it was that bad because nobody really talked to me about it. It was bad when he passed away, and as I started getting older I realized how much pain he was in because I understood more how sick he was.
Now at 16, Stephanie admits that she doesn’t remember a lot of things about her brother. But when she watches home movies, she’s reminded of who he was. “He had a big smile on his face like 24-7 in every single video.”
Enrique’s death was incredibly difficult on the family, particularly Stephanie’s mom. As often happens after such a loss, her mom fell into a depression. Stephanie says it was difficult to see her mother in such pain and so she tried to bring her parents some happiness. “I tried to stay positive for them. I joined softball. I think going to games gave them happy things to do.”
Sometimes she feels pressure now that she is the oldest child. She also feels guilt for the special attention she gets from extended family members who treat her differently because she lost her brother to cancer. “I felt kind of bad for my cousins. I was a favorite because my brother passed away. My cousins got mad at me.”
Before his brother Travis was diagnosed with an aggressive form of brain cancer called medulloblastoma, Tyler says their family had never experienced any major negative events, and that they were doing well. “I had a healthy relationship with everyone. We all talked a lot.”
Tyler shares his experience of his brother’s diagnosis:
My parents kept me pretty informed and so did the doctors. I was at the appointments with them. That was pretty good for our family that we were all on the same page. Especially me being the older sibling, they felt I could hear everything Travis was hearing. It was a good thing.
As it happens, things got tougher on the family after Travis was admitted to the hospital. He was there for about 10 days. According to Tyler, their parents would alternate time at the hospital with Travis and time at home with Tyler. One parent would spend the night at the hospital and the other would come home at about 10 pm. “I’d take the bus home, and either my mom or dad would go straight to the hospital after work.” While this was tough on everyone, Tyler says his parents made sure to stay connected. “When Travis was in the hospital, my mom and dad would call me every day to talk after school.”
Months later, Travis’s doctor proposed he either have regular radiation or the more pinpointed proton radiation. They chose the latter, which he would have to go to MD Anderson Cancer Center in Houston, Texas, to receive. Once again, the family would have to endure long, trying separations. After flying to Texas and helping Travis and their mother get settled, Tyler and his dad flew back home to San Diego. Every weekend their father would fly back to Texas, while Tyler stayed behind with his grandmother, who had flown in from Tennessee so he didn’t have to be home alone. “I was 13 or 14 at the time and I couldn’t do much on my own. My grandma would drive me and take me places.”
During those tough times when his family was in Texas, Tyler recalls video chatting with them almost every morning before school and before Travis had to go to his appointments. “I’d often be eating breakfast during the calls.” Tyler says those phone calls were the key to keeping their family connected.
A note to parents: Parents often feel a tremendous amount of stress or guilt at having to divide their attention between siblings, never mind when one of them has cancer. It is worth noting that every sibling interviewed for this story acknowledged the efforts of their parents and the difficult position they were in caring for a child battling cancer.
If you or someone you know would qualify for Sibling Camp, please click here for more information: SIBLING CAMP
Tips for supporting sibs
The American Cancer Society offers helpful, age-specific tips shown to reduce stress in siblings (and patients) dealing with cancer. https://www.cancer.org/treatment/children-and-cancer/when-your-child-has-cancer/dealing-with-diagnosis/what-helps-kids.html