Childhood cancer affects the whole family, not just the child diagnosed. Unintentionally, the needs and feelings of siblings often get pushed aside due to the immediate requirements of the sick child. When our son, Shawn, was diagnosed with a brain tumour at the young age of 16 months, we hardly knew how to parent him, in what was now the whirlwind of our lives, let alone his healthy 4 year old sister, Jayme. Over the 18 months that followed, my husband and I took turns navigating surgeries, treatments and therapy while the other tried to retain a sense of normalcy for our daughter. Mistakes were made absolutely, but we learned from them and it’s from this insight that I would like to share some of those lessons.
1. Acknowledge their Emotional Rollercoaster
We know the rollercoaster of emotions that we experience as parents of a child with cancer are many and are ever-evolving. Without the experience and maturity of adulthood these same emotions for a child can be extremely strenuous. It’s very important that parents recognize these feelings as legitimate and open a dialogue with their children so they know that they can talk candidly about how they feel.
Many fear that cancer can be caught like a cold and shy away from their sibling. Others, who are younger, may not understand what all the fuss is about; they had been sick before and never received such a response. There can also be resentment as the parents focus their attention on the child with cancer and even jealousy over the ‘preferential’ treatment. In much older children, who may be aware of the serious nature of cancer, there may be the fear that their sibling will die. All of these emotions are perfectly normal but need to be acknowledged and discussed not just once but regularly throughout the family’s journey with childhood cancer.
2. Remove the Mystery
During the first few months of Shawn’s diagnosis, Keith and I rotated between our two children every few days. The house became a revolving door of care givers, packed bags, hushed conversations and solemn visitors. We told Jayme as much as we could for her young mind to comprehend but having no point of reference, just mentioning the hospital brought on a wide eyed, frightened reaction. We debated whether to take her to visit, worried that the scars and tubes that were now part of Shawn’s life would terrify her. When we finally mustered the courage, she was thrilled to be part of it all and seemed relieved to see that the hospital, with its play rooms and kid’s library, wasn’t the torture chamber she had pictured in her mind. She was much more settled at home after that first visit and seemed to be more accepting that one of her parents was always away.
3. Continue or Re-establish Boundaries
We all know that kids thrive on routine, but as a parent of a child with cancer who has other children as well, normal isn’t always possible. As healthy four year olds do, Jayme pushed the boundaries of behaviour and, in our utter exhaustion, we often let her get away with it. She became one of those cringe-worthy kids screaming in the grocery store. Not only did we need to revisit our parenting skills but we needed to instill the importance of these boundaries to the other caregivers in her life who had begun to give in to her every whim. The good news is that once boundaries are re-established, kids thrive on them.
Boundaries are not just important for kids but for the influx of supporters as the news of the cancer diagnosis spreads. I recall Jayme breaking down into frustrated tears when yet another stuffed animal for Shawn arrived at the door. Limiting the gifts and visits is difficult but gearing the conversation of a visitor appropriately in the presence of a sibling and suggesting a meal that the whole family can enjoy instead of gifts when someone wants to show their support, is helping to lessen the perception that the family’s life now revolves around the child with cancer and everything and everyone else pales in comparison.
4. Engage the Child’s Support System
One thing we did do right was make the adults in Jayme’s life aware of what was happening within our family. This included her Kindergarten teacher, her friends’ parents and really any adult that spent any amount of time with her. We relied on them to be our eyes and ears to help us assess how she was coping with our ‘new normal’. A call from the Kindergarten teacher let us know that Jayme had told all of her JK classmates that her brother had cancer and they had ridiculed her for being a liar. With this knowledge we sat her down to explain how uncommon our circumstances were and how hard it would be for her classmates to understand. And, of course, followed up with a few phone calls to parents explaining the situation so it didn’t spiral out of control.
5. Involve Children in the Care of Their Sibling
We continued to take Jayme on visits to the hospital and later to Ronald McDonald House but when Shawn finally came home, it was then that Jayme took on the surprising role of therapist. We started out small, having her help give him a bath and get him dressed but it quickly became more as he became enthralled with her. When the physical therapist visited, Jayme showed Shawn the exercises and when we needed to encourage his speech, Jayme became his coach and cheering section. We would try to do the same but it was Jayme who really motivated Shawn to try his best. Sometimes the best therapy is the support and encouragement that comes from a brother or sister and involving the whole family helps to remove the barriers of resentment and jealousy.
Sue McKechnie learned her young son, Shawn had a brain tumour in May of 2006. When he passed away 18 months later after the rollercoaster of diagnosis, treatment, hope and terminal illness, she realized that even though he was gone from this world, he continued to send her courage from another. The message was clear – get out there and help other families sharing this journey. Since then Sue has written the book ‘A Sippy Cup of Chemo; A Family’s Journey Through Childhood Cancer’ hoping to spread the message to other bereaved families that they are not alone. “It’s wonderful to talk to other parents who truly understand – the grief, the guilt and all the myriad of emotions you face. We didn’t choose to be part of this group, nor would we wish it upon anyone else but here we are and we need to support each other.” All the proceeds from her book are donated to Meagan’s Walk; benefitting brain tumour research at SickKids Hospital, a charitable organization whose committee Sue is a member of. Sue continues to advocate for funding and awareness of childhood cancer through blogging, speaking engagements and her work through Meagan’s Walk.