When a child has cancer, understandably, much of the family's attention shifts towards treatment, hospital visits and simply getting through each day. Brothers and sisters are living through it too, often with fears and questions they keep to themselves. The effect of cancer on siblings can be profound, making it just as important to notice how they're coping and give them space to be heard.
It was a warm afternoon and my wife was having tea with a friend. The conversation turned serious when Debbie began speaking about the loss of her little sister. Over forty years had gone by since Kathy’s passing, but the memories were still at play in the here and now. It got me thinking about the collateral damage of cancer. Certainly, the ill child faces untold suffering. Parents go through a multitude of emotions like anger, guilt and anxiety. What about the siblings? How are they affected and what advice would Debbie give to parents regarding the care of siblings?
Debbie’s story:
Debbie was just 10 years old when her little sister Kathy started getting ill. Initially it was mornings of tummy pain or headaches. Kathy would stay off school and get to spend the day with mum. Debbie recalls, “I felt twinges of jealousy. I also wanted special time with mum and a day off school”. Kathy went to see two different doctors over a period of a couple of months. The doctors said there was nothing to find. “Was Kathy such a good actress? Was she just saying she was ill so that she could get out of school? Did mum not notice how she was being played?” After many days off, a third doctor discovered that Kathy had a brain tumour. This is how the nightmare began.
Kathy required surgery and chemo. Debbie recalls the long days of being away from home and staying with friends, the muffled voices of her parents’ conversations and the enormous guilt over believing that Kathy was just attention seeking, when she was really so ill.
A year passed and Kathy was able to return to school. Debbie recalls how brave Kathy was. With a scar and no hair, Kathy faced the stares and giggles of the other children. Debbie wanted to scream at them and tell them to leave her little sister alone! She couldn’t bear the cruelty. Why didn’t they understand?
Just when life seemed to be coming back to normal, the cancer struck again. Another lengthy surgery, more trauma and more days of being farmed out to family and friends. Debbie recalls, “I got used to being alone. I taught myself to be self-sufficient. I didn’t need anyone. I pushed myself academically and didn’t pine for my parents’ attention anymore.”
When Kathy came home again, her bed was set up downstairs in the lounge. Friends came to visit and brought presents, sweets and flowers for Kathy. No one seemed to notice Debbie. “I felt invisible. Kathy wasn’t allowed sweets, so I ate the sweets in front of her.
I don’t know why. I guess I was just testing her reaction and needing some care myself”.
And then just like that Debbie was gone. “Her room was empty and the silence deafening. The house seemed shrouded in a heavy blanket and the dinner table was cold and lifeless.
I had to get away. I spent my days with the friends that had been there when Kathy was ill. Now that my mum needed me, I had no capacity for her”.
My wife then asked, “How did you cope following this terrible loss?”
Debbie responded, “My late teens were years of emotional struggle. I was riddled with grief and guilt as I tried to navigate this difficult phase. I knew how my younger self had felt during those awful years and yet I couldn’t be kind to that child. I wished she could have been better both for her parents and little Debbie”.
My wife asked, “What brought you to a place of peace?”
“I went to live in London. It was only at the age of 25 years that I spent time with a remarkable psychologist. We worked through all my feelings and I came to understand that my responses had been completely normal”
- Being sad and angry were normal responses. I felt isolated from my parents, but at the same time I missed Debbie.
- Jealousy and resentment because my sister was getting all the attention was to be expected. My life had been thrown into turmoil. My routines changed and I could no longer have normal playdates or go on family outings. Everything revolved around the hospital visits.
- Feeling guilty for having negative thoughts about the attention and presents. These emotions stemmed from my own needs for love and attention.
- The awful feeling that perhaps I should have been the one to get ill instead of Kathy. This is something most siblings struggle with.
What would your advice be to parents who find themselves in a similar situation?
- Parents should not pretend that all is well. Include the siblings in honest conversations about what is going on. Naturally, these conversations should be age-appropriate. It will help the sibling to feel comfortable asking questions and to express feelings of their own.
- Let your child know that they can talk to you as often as they need to. Coming to grips with Debbie’s illness and why it came back was not something I could have processed in a single conversation.
- Be honest and clear by using the correct medical terms. Call the illness what it is. It is cancer or leukaemia. Metaphors or vague phrases can confuse young children and leave them open to misunderstanding. When people asked me what was wrong with Debbie, I needed to be able to say with certainty and trust that my parents had told me the truth.
- Let your children see your emotions. Don’t hide your tears. I needed to know that I was allowed to cry, that my sadness was real and that it was safe to show how I was feeling.
- Reassure your child. As strange as it may sound, I sometimes wondered if it was something I had done that made Kathy ill. I would then get scared that I would also get cancer. Children need to hear that it was nothing that they said or did that caused the illness. Cancer is not contagious.
- Don’t be afraid to seek psychological assistance for yourself and your other children. Perhaps my teenage years would have been easier if I had understood all my feelings sooner. Struggling until the age of 25 affected many things, including my relationships with others.
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In conclusion
This honest discussion about a very painful topic proved extremely insightful for me. In my field as a general paediatrician, I am not involved in the long-term treatment of cancer patients, but I do encounter their siblings. Perhaps sharing these recommendations with parents will prove helpful to the families. Any family that has to cope with a child with a chronic illness will suffer the same distress. These tools may help to support the journey of those who often have to sit on the sidelines.
In my research, I noted that there aren’t a lot of studies around the topic of the impact on siblings, so I am extremely grateful to Debbie for permitting me to share her story and insights. Everything that she told my wife IS substantiated in the limited studies.
What I have found in the literature that is extremely heartwarming is that there are often long-term, positive outcomes. Children who have experienced an ill sibling have an incredible capacity for empathy. They show deep compassion for others and have a maturity about life and its fragility. These children have strong family bonds and thrive on time together. Ultimately, their career choices often follow the path of a healthcare provider, nurse or teacher. What an incredible gift to be able to give back to society, leaning on a true understanding of what it takes to emerge from this trauma.
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