The Covid-19 pandemic has changed much of how we live our lives – and seemingly overnight. Before the shutdown, business owners almost universally told me they were having their best year ever.  I , myself, was looking forward to several performance dates with my band, a new hiking adventure in British Columbia with my boys and some great family fun events at work. All at once, everything ground to a halt as each of us struggled to adjust and make sense of events that evolved daily. Each day felt less and less familiar and plans that felt unchangeable just a week before were now cancelled. Parents and other caregivers tried to find the words to explain to children that which they themselves did not fully comprehend and offer comfort while feeling very unsettled. This was not just a regional or national disruption but a global crisis. While the pervasive effects of this pandemic are unique for most of the population, they are eerily familiar to families that live with childhood illness.

For families living with childhood cancer, one day everything is the same, and the next, everything has changed. The plans you made, your schedule and commitments are all on hold. The routine and rhythm of life provide familiar stability, which is comforting. When that routine is gone, we instinctively know something is very wrong. Fear and anxiety become new companions. Does this sound familiar? If you are a family living with childhood cancer this is exactly what happens. Even after you adjust to the shock of diagnosis and to the many ways life has changed, you realize that you have daily decisions to make that the rest of the world cannot understand. You are always weighing the risk and benefit of simple outings. If your child is immune compromised they cannot come with you to the store to go shopping and get out of the house. They cannot go to a party or to the movies. You might get sick from being around other people, and the risks are too great to outweigh the benefit. This is very isolating. I have been struck by how many of our families have remarked, “Now the rest of the world knows how we live.”

For those of us who have endured long hospital stays with our kids or lived through months in “isolation” for a bone marrow transplant, the outside world is risky. We watch people touch their faces and cough. We travel with hand sanitizer. We get angry with people who go to the store with a child with chicken pox because “well, everybody gets it”. These are risks to our children’s health. Therefore, this current health environment is all the more risky for our families because they are a “high risk population with underlying health issues”. This virus and the resulting loss of routine triggers a kind of PTSD response in our families because it harkens back to our only other experience of such loss when something was very wrong.

So what do we do with these feelings? How do we cope, and what can we learn from the experts on disrupted lives? No, I am not channeling Anthony Fauci, I mean our kids. When I meet newly diagnosed families, I tell the parents to follow their kids’ lead. Children live in the moment. They do not project. They do not worry about what was or what will be. That is the secret; be present, be grateful for simple things, and find joy wherever you can. Make the most of whatever we have and remember that you may find joy by helping someone else find it. Children are experts at this, and they will show us all the way if we let them. Personally, I hate the phrase “new normal” because to me it surrenders to the status quo and admits powerlessness. We will have our lives back and we will get there with grace, dignity, joy, and kindness.

Why Me and Sherry’s House exist to facilitate personal connections and support for families with childhood cancer. We have had to find new ways to re-imagine these connections and support. Here are some of the ways we have moved forward.

Since mid-March, we have maintained relationships with our families through email and phone calls.  We have offered non-perishable food and essential items from our pantry to our families.  We provided bags of “summer fun” to help bring a few extra quarantined smiles to our younger children.  All of our support groups have gone virtual- because childhood cancer is isolating enough without a quarantined pandemic.  We have continued to think outside the box for other ways to help make families smile and create a few fun memories along the way.  In June, we hosted a virtual trivia night and a drive-in movie night with all social distancing protocols in place.    It was so great to see the families at the drive-in movie and everyone said, “This feels so normal!” We are doing eve

rything we can to continue to support the families who need us most right now while remaining committed to their overall health and safety.  In the coming months we will continue to provide support to families as needed.  We also have some new family fun events in the making over the coming months that will continue to help us provide special memories for our Why Me families.

– Written by David Hagan

David began his relationship with Why Me in 1994 after his son, Ben, was diagnosed with leukemia at 19 months. When Ben succumbed to his illness in 1996 following a bone marrow transplant, David began coming to the Circle of Healing bereavement group and never lost touch with his extended Why Me family. In 2006, he became a full time volunteer and eventually  joined the Board of Directors.  David became the facilitator for the bereavement group, which he still runs and currently serves as the Executive Director.

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.