Caring for Siblings is Caring for Childhood Cancer

By Mark Rheaume

February 15. Some calendars will call it “International Childhood Cancer Day.” My own calendar reminds me that in ten days, my brother will have been dead for a year. Matthew died of cancer. He had it as a child, as a young man, and through most of his 36th year. I admit, I am still getting used to calling myself a bereaved sibling. 

Like all of September, which is, of course, Childhood Cancer Awareness Month, today calls for mindfulness and advocacy. And yet, as a bereaved sibling, I wonder if we might spare a thought today towards the care and love of the siblings of childhood cancer. And I wonder if that might be an essential part of treating childhood cancer.  

Let me share, first, some things that will not surprise you: Siblings want to be there. Siblings are often our first friends. If we’re lucky, they’re our best friends. And so, it makes sense that a sibling of a child in treatment would be deeply affected by that treatment.  

I remember feeling sidelined. There were babysitters galore. I got sick of the taste of lasagna, however thoughtfully given to us. Even as a six-year-old, I wanted, desperately, to be at the hospital. And yet, hospitals are grueling places. They’re packed with machinery. They reek of chemicals. The hallways have a heaviness to them—the kind that prohibits laughter, and frowns upon smiles. I wish I could tell you that I always knew just what to say to Matthew when I visited him. That’s not the case. I stared for a long time at the depression in the cot where his leg had been just the day before. I remember averting my eyes from his eye socket, before it was patched over with a muscle from his back. Such were the costs of his cancer, early on.  

Still, I wanted to be there. In fact, there was a week that my parents were out of town when Matthew was in chemo. I spent every night in St. Louis with him, in a big blue chair next to his bed, and then I drove the thirty minutes home, across the river, to be a regular high schooler. We waited hours on Saturday for his blood counts to come back. During that time, we exhausted all two video games we had at our disposal. It was the smallest taste of what my parents had been enduring for years. Maybe that’s why I liked it. Visiting made me feel useful. Helpful. Maybe that’s what I wanted.  

Siblings want to know. Early in our cancer journey, my sister, brother, and I attended a camp for kids with cancer and their siblings. Uniquely, the camp invited us to go together, at the same place and time, but we were placed in different cabins. I was, for example, in the Younger Sibling Boys (though I’m sure we came up with a better cabin name after a day or two). Before we went to bed, our counselors gathered the eight of us on the floor, at the center of our bunks. We set our flashlights in the center, like a campfire. Every night, our Sharing Circle gave us a chance to voice our feelings about being away from home, or our goals for camp, and why we were even at such a camp.  

There was a huge variance in knowledge amongst the boys. Some described the precise sarcoma and medicines and even the prognosis. Others described a brother or sister who had been dead for years. A few just knew that their sibling was sick. I think I was in the latter group, and I remember vividly the envy, and the desire to know more—if only to be a better witness of my brother’s fight. Only when I was older did I learn what incredible peril he had been in. Contrary to the wisdom of mid 90s, that ignorance was not a gift. I wish I knew. I wish I had known. And I still want to know. 

Siblings want to understand. In the “Dead Brothers” club, we call this “survivor’s guilt.” I tried for so much of my life to minimize the differences between Matthew’s body and my own. I was able to do things he could not. I could go for a run, or drive with confidence. I had romances, and now I have a wife. I don’t know if he had all of those things. I wish I had found the courage to ask him how he felt about all of that. I wish I had known his pain more. I wish I had patience and understanding for the incredible trials his body carried him through. I still want to understand.  

Siblings want to have normalcy. I’m not certain there’s a delicate way to say this: siblings of cancer do want to be the star, sometimes. They want to be the main character every once in a while. They, like all children, need attention, validation, and curiosity about their experience of this world. I felt I could never ask for those things as a kid. I was supposed to be strong and silent and humble. But I ached to be normal.  

Now for what shouldn’t be surprising, but might be: children in treatment want these things for their siblings. I really believe that. I think they want their siblings to visit, or call, or send a video. They want their siblings to share their knowledge of medicines, and chemo-cocktails, and MRI’s. They want their siblings to live as full a life as possible—do we not all want that for our own friends?  

I believe, too, that a child in treatment wants their sibling to remember them—to be prepared and ready and willing to advocate for anyone similarly affected by cancer. As much as their brother or sister endures survivor’s guilt, a child fighting cancer is capable of feeling guilt for taking so much of their parent’s attention and time and energy. We should care for them! And what a comfort that would be, for the child in treatment. And so, in this way, caring for the sibling is a part of treating childhood cancer.  

Are we speaking of a cure here? No. This is a bandaid. But bandaids are necessary. They’re vital. They come in cool colors. Some have Mickey Mouse on ‘em. I’m new to the Iowa Cancer Plan. It’s not a document I know well, nor did I help write it. I wonder, quite selfishly, where I belong in it. Where do the siblings go? Where do the bereaved go? And where do bereaved siblings go?  

There’s one heading that might work: “Achieve excellent quality of life for all Iowans with cancer and their caregivers.” Perhaps that quality of life extends to the child who might be left behind. Let’s spare them a moment today, on International Childhood Cancer Day.  

Some ideas to send you home with, whether you’re in the medical field, or a parent, or simply someone who cares:  

1. Bring an extra gift. Don’t leave the siblings out. Know that they, through no one’s fault, are inherently left out of so much.
2. Include the siblings in social media. There are all of these Facebook pages now, that so wonderfully advocate and inform people about their child’s cancer journey. But siblings are built for advocacy. We’re forged with resilience. When it feels as though nothing else can be done, enable siblings to be the broadcasters of awareness. 
3. Plan special outings with each child. Let the child in treatment know that you’re taking spectacular care of their sibling. Go get ice cream. Ask them what they know, and what they want to know. Be honest with them.  
4. Invite their siblings to visit. Ask if they’d like to go to the hospital. Ask for how long they’d like to visit. What would they like to do with their brother or sister? What could they do for others who might feel left behind?  
5. Find support. If it is not my organization, find another. We’re all over. There are camps across the nation, and they’re all different. Find siblings who have experienced loss of this kind. There’s more of us than ever. Your children will need the perspective and understanding that only a sibling can offer.  
6. Care for the parents. I think, strangely enough, that everything said here could be said for the parents. Parents: care for each other. You need and deserve care. Your whole family does. 

About: Mark is a bereaved sibling of cancer, a professor at the University of Iowa, and a volunteer at HIS KIDS in IOWA, an organization hoping to launch a small, therapeutic summer camp for kids with cancer and their siblings.