“WCK families are WCK families for life.”
One family's childhood cancer story of love, loss, and making lemonade from lemons.
By Sharon Bulger
Our childhood cancer journey began on January 18, 2018, when our then six-year-old son, Cameron Bulger, experienced a series of focal seizures in his grade one classroom. The cause of those seizures was a golf ball-sized tumour in the right frontal lobe of his brain. After many nights in the hospital, brain surgery, and an anxiety-filled waiting period for the pathology results, we were horrified to learn that Cameron had a grade four malignant embryonal tumour and that the prognosis was bleak. We had one treatment option that might work, or at least buy us time, and we jumped on it.
Cameron and I moved into the Oncology ward on the eighth floor of BC Children's Hospital for what would be the better part of six months. Cameron was on the Head Start Four treatment trial, which consisted of three rounds of induction chemotherapy, three rounds of mega chemotherapy, three autologous stem cell transplants and ended with 30 treatments of proton radiation therapy over seven weeks in Seattle.
Our lives were completely turned upside down by this diagnosis. I took a leave of absence from my job; my husband and younger son lived at our home in Surrey and commuted for visits twice a week when Cameron's health allowed. Cameron and I were in isolation for three of the six months due to his immunocompromised status.
Cameron was a trooper and never complained despite being fed by NG tube for most of his treatment, enduring awful side effects and painful infections and illnesses. Our family decided early on that we would make lemonade from each lemon we were handed – and let me tell you, not a day goes by without a basket of lemons while on treatment! Each day we would look at each other and plan how we would incorporate some fun into that day. The type of fun depended on how he was feeling and ranged from movie marathon days and novel reading together to Mario Kart tournaments, LEGO building, Beyblade tournaments, and attempting hockey and bowling in our room while hooked up to what he referred to as his IV tree.
We were at BCCH during the start-up days of WCK, before the launch of the food support program. There are no convenient food options at BCCH for parents. Not only is it hard to leave your sick child's hospital room for more than a few minutes, making meal prep a challenge, but it is not financially sustainable to order food every day. Healthy food options are a game changer for tired parents with little to no self-care or downtime. We lived in Surrey and were fortunate to have amazing support from our family and friends, who brought me meals and supplies weekly. That is not the case for many families who either do not have a support system that can assist with these types of basic needs or who do not live in the lower mainland. The food support program is essential and fills families' basic but significant needs.
In January 2019, Cameron was declared in remission, and we were beyond thrilled. We immediately began to rebuild our lives. Cameron still had many side effects from the treatments and relied on his NG tube for the vast majority of his caloric intake; however, he had a passion for life and a strong desire to give back. Cameron's dream was to fund much-needed pediatric cancer research, raise awareness of the importance of donating blood, and find ways to better support families in the fight. He set to work selling his homemade comic book and joined forces with his brother and close friends to create other innovative ways of raising funds.
In August 2019, Cameron relapsed, and this time he was terminal. With no treatment options on the table, we searched and grasped for any possible treatment trials. In the meantime, we made as much lemonade as possible. Each day we were given was a day we could make family memories, and we did not take a single one for granted!
During this time, we made special t-shirts for Cameron that had zippers sewn in to allow access to the port that was medically inserted into his chest. Cameron loved the dignity that came from these shirts, as it meant he did not have to remove his shirt each time the nurses needed to access his port. He dreamed that every child with a port or central line would be given a port shirt, This is where WCK entered our lives.
They connected with us on such a relational and practical level. Karin, a WCK staff member, brought us a grocery gift card to alleviate some of the pressure, and on that visit, our very sick Cameron insisted on coming outside to meet her. The two immediately hit it off, and a pretend light sabre battle ensued on the front lawn. A relatively new grassroots group looking to support oncology and hematology families immediately became a part of our support and encouragement team!
WCK took Cameron's port shirt dream and turned it into reality. However, they did not stop there! They made a point of connecting relationally with me, checking in and asking questions about what my family needed most in these unimaginable months. We were one of many families they were connecting with. WCK heard needs, found funders and created programs to meet these needs – and they did this with grace and care.
On May 16, 2020, Cameron passed away peacefully in our home, surrounded by our family. So much was lost that day, but WCK did not leave. They stood with us in our grief and said that WCK families are WCK families for life and set out to understand better what bereaved families need to survive the trauma of loss. WCK is committed to supporting families after loss and offers many connection opportunities for siblings, including the City Camp summer camp.
Our experience with the WCK team and their unending commitment to supporting families navigating childhood cancer and blood disorders were so impactful. In the fall of 2021, I joined the WCK Board of Directors because I believe wholeheartedly in their work and because Cameron felt so strongly about giving back. Each day has become about finding ways to honour his legacy by following his example of raising funds, awareness and supporting those in the midst of this life-altering journey.