Walking into the clinic waiting room for the first time the weight of it all exploded. Today my baby will start chemotherapy. It had been five weeks since his initial diagnosis and in that time my world had already begun to shrink. Everyday brought a new set of challenges that took 100 percent of my attention. And while our friends and family were devastated and supporting us as best they could, the reality was when your child is diagnosed with cancer everything in the outside world stops. We were living in survival mode, a deep dive into endless research, sleepless nights, and constant appointments. Our life before cancer quickly became a distant memory.
Walking into the clinic for the first time childhood cancer grew beyond our one story. We sat surrounded by families. So many families. The newer ones, like us, stuck to the quiet corners of the room, reluctantly glancing up as bald children run by. The “veterans” knew the nurses and staff by name. They let their kids run free and play games, watching from a distance as they sat in circles talking with the other parents. They looked relaxed and strong, while I clung to my baby trying not to cry.
It was indescribably overwhelming to realize that our devastating diagnosis was just one of so many. By the end of that first visit I too learned our nurse’s name. The kind woman at the front desk took her time to explain the lunch menu and parking passes and our upcoming treatment scheduled. On the way out one of the moms casually said “See you next week.”
Week after week these people, the nurses and doctors, the other moms and dads, became like family. We spent countless hours a week with them. We learned each other’s diagnosis stories and treatment protocols inside and out. I relied on them for advice when treating side effects or picking new protocols. I fell in love with their kids and they with mine. These relationships grew beyond passing hellos/goodbyes at clinic into supportive strong bonds, leaning on each other to get through the tough days.
Cancer causes a ripple effect. Each drop, each diagnosis, starts a small wave that eventually washes over all of us. While caring for your own child you spend weeks, months even years by the side of other children and families. The losses and gains along the way become collective – a feeling that we are all in this together. When a child is doing well we all celebrate. When a family is given bad news we all mourn because we all know it could have just as easily been our child.
Even when things get difficult, there is strength in the unity that comes from sharing “the childhood cancer diagnosis.” Recently Why Me hosted a meeting, facilitated by a social worker, for a small group of families who had been struggling with how to cope with and support each other. The parents participating in this meeting truly consider each other family. They feel each other’s pain, deeply, but also expressed that despite the sad and complex feelings that come when a child is not doing well, they will show up for each other. To be in the company of other parents who truly “get-it” both good and bad is ultimately comforting.
Each family reacts to these situations differently. As helpful as it can be to be a part of a community of people with similar struggles it is also important to check in with your individual needs. In addition to peer support some find it helpful to speak with an individual counselor, attend a formal support group or even seek support from ones spiritual community.
Personally I found support in many of these places. Helping support others lightened our burdens, but I would not have felt that way if I too wasn’t being lifted up and supported by others. However, there were times I just needed space to let our story unfold without the input or worry of others. Having the community we had at Why Me allowed for all of those feelings as we came in and out of support groups, formed close connections with other parents and were referred to additional resources to support our family beyond Why Me.