This weekend past, my family and I sat along the shores of Maple Lake just south of Parry Sound with several others, sharing space together under grey skies and the bright colours of the autumn forest surrounding us.
We were new faces there - many of the other families had been gathering like this for nearly nine years, bound together by the invasive grasp of Neuroblastoma, a deadly childhood cancer that attacks upwards of 50 new children a year in Canada. This is a disease that shatters families who are forced to place their lives on hold while dedicated specialists navigate each individual case, hoping to find the best way to fight back. Some children will live and as science and research progresses, hope in the face of this disease continues to grow, but sadly many children are destined to follow the path of a young boy named James Birrell, for whom this annual Family Retreat we find ourselves at is named.
We were invited to join this year’s retreat because of the role my wife and I play on the committee that organizes the annual Nexicom James Fund Golf Classic, the Peterborough tournament that raises funds to pay for this retreat. Our children are healthy, thankfully, but our definition of family is broad and Neuroblastoma came into our lives through others we hold close. We know the fear.
We also have known that The James Fund Family Retreat is an important weekend for many families who are either going through treatment, living with the hope that relapse is a word they’ll never hear, or have lost a child after a torturous fight against the disease.
We know family support is so important, but until you sit with the families and hear their stories, you can never really understand the significance of this gathering. For Hannah Munro, for example, who’s been coming to the James Fund Family Retreat since the first one was held 9 years ago, the gathering helped her discover her true self while offering a depth of confidence that may have eluded her had she not met other survivors.
“Everybody I know who goes to camp is so much more accepting and knows themself better than those who don’t, and they find that out quicker,” Hannah says. She looks at friends who’ve lived healthy lives and sees insecurity in many ways, she tells me. I see how she carries herself today at 21 with poise and self-assurance, and smile when she tells me that her time with fellow survivors helped make her the person she is today.
“When you come here, you learn to let go,” she says. People are quick to rush to judgment in the outside world, but the retreat has always been a safe place where children can be themselves and parents can find comfort in each other’s collective strength.
And there are brothers and sisters, grandparents and close friends, all of whom have lost and given so much to support a child facing death. In their presence, I was in awe, filled with gratitude to be a part of it, learning firsthand about the power that lies in connectivity and true peer support.
“I have found that having a young child with Neuroblastoma in the house – whatever else it does to you – can be an isolating experience,” wrote Ronald Orenstein in a thank you letter to the committee following the retreat. His three-year-old Grandson, Royce, has been in treatment since February. “Except for trips to the hospital, you become confined to your home, fearful of encountering infection and too exhausted to seek out others. You feel alone, singled out for your own particular punishment.
“Because of that, I cannot tell you how glad I am that my wife, Eileen, had the diligence to seek out the James Fund and to sign us up for its October retreat at Camp George. Here we found friendship, understanding, and at least some measure of comfort.”
This event would be almost impossible to arrange if it weren’t for the generosity of so many people connected to the James Fund Golf Classic, strangers who give of themselves in the name of supporting other strangers from afar. Each day the world of Neuroblastoma is filled with hope and terror, courage and fear, optimism and tragic sorrow; for those who stare the disease down each day, knowing they don’t walk alone may be enough to keep them moving.