let's face the unimaginable: campaign aims to ensure 'no childhood is lost to cancer'
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childhood cancer is a leading cause of disease-related death for children in the country, and every day, approximately six new children will be diagnosed with the disease.
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childhood cancer is a leading cause of disease-related death for children in the country, and every day, approximately six new children will be diagnosed with the disease. the diagnosis, while challenging to hear, is just the tip of the iceberg when it comes to care, because when a child is diagnosed with cancer, it changes entire families.
but it isn’t just the big things that change; it’s everything. from thinking about treatments and medications to when you’ll have time to cut the grass, entire routines within families are completely and utterly upended when a child is diagnosed with cancer.
“that stress builds up so much, and when we look at emotional tolls on families, those emotional tolls aren’t always seen. they’re not always felt in different ways, and sometimes they may seem small,” said kyle smith, national director of development with childhood cancer canada. “families live in constant (stress) from responsibility and uncertainty at the same time.”
adding to the stress is a lack of support from well-meaning loved ones who aim to provide a shoulder to cry on, but say things like “i can’t imagine what you’re going through,” which only further compounds their responsibilities to then buck up and therapize others.
“us, as an organization, take that back, and we said, what is it that they can’t imagine?” said smith.
their latest campaign, let’s face the unimaginable, is geared toward breaking down those walls so that people will truly understand the devastation of having a child diagnosed with cancer, not just because of the cancer itself, but because of the ripple effects that spread out over every area of the entire family’s lives.
“it’s focused on pulling back that curtain. it’s focused on highlighting the realities that come with a childhood cancer diagnosis.”
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facing more than just a diagnosis
entire families are shaken up when one child gets a diagnosis. first, they have to contend with a completely new routine of caring for that child, ensuring they’re getting to all their appointments, getting the right treatment and focusing on getting better. but that’s just one piece of the entire puzzle.
at first, families aren’t thinking about anything else, whether that be financial stress or other logistics. they tend to hyperfocus on the cancer itself because sometimes, it’s “life or death.”
“understanding those impacts of chemo, radiation, general surgery, any family or parent who has to make that decision for their child, that emotional toll is, am i doing the right thing?” said smith. “and the answer is, we don’t always know … is my child going to be that one in 6 or have that 60 per cent chance of relapse or other healthcare challenges as they grow up? and it really starts to wear on the families we talk to.”
children who are diagnosed with cancer often have an increased risk of various health issues due to the nature of treatment, with some growing up to develop a chronic condition, such as heart or lung disease, infertility, second cancers or mental health struggles. so, even after the cancer has been treated, the emotional and physical toll on families isn’t over. it’s long-standing.
other burdens that begin to build up fast that can have lasting effects include financial strain. will parents need to quit their jobs to ensure their child can go to all appointments? do they have insurance through work that would cover something of that nature? what about families that live paycheque to paycheque? these financial stressors all show up at some point, and they are “fairly significant.”
“we often hear that when a child is diagnosed, the parent and the family is diagnosed as well because they have to be there. they’re making decisions as they go forward, but often, one parent at least takes time away from the workforce. that’s loss of income for the most part,” said smith.
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along with lost wages, things such as general transportation, parking charges for being at hospitals and health-care centres, accommodations for people who don’t live close to their treatment centres, all add up significantly, and they are rarely, if ever, “budgeted for.”
“families have to choose to figure it out after the fact, but they are faced with, how do i pay my mortgage or how do i pay my rent so i have a house to come home to,” said smith. “these are heavy, heavy decisions. we know that most of it all the time will go to the child, make sure they’re taken care of. but the reality is there’s financial pressures that mount every day.”
families with more than one child also often deal with what is referred to as the glass child, making connecting as a family during some of the most important years a challenge, too.
“when a child, a sibling, is there and their sibling is ill in the bed with cancer, it’s often like you’re looking through them to make sure the child in bed is in that treatment and that treatment is taken care of,” said smith. “where that second, third, or fourth child really is often missed.”
all of these points of stress and pressure build together during the hardest time of a family’s life, and when people haven’t lived through it, “you don’t know what goes around it.”
“it’s a hard conversation to have. your child is sick, your child is going through cancer and cancer, as much as it’s a very common thing in the world … when it becomes a child, the scenario with that emotion is very different,” said smith.
a campaign to foster better understanding and drive research
the campaign let’s face the unimaginable was created to shift perspectives in helping people who don’t really know what it’s like get a better idea of what goes on, and why saying things like “i can’t imagine” really just sounds like avoidance.
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“people were using the reflex of ‘i can’t imagine’ to somewhat deflect in a very kind way to say that’s a lot, ‘we’re not ready to jump in,’” said smith.
it’s the hope that changing the narrative will help more families speak more openly about their experience with people who want to understand, instead of shying away from the vulnerability it takes to really put yourself in someone else’s shoes.
“creating those opportunities to share the stories is so valuable and to be able to amplify them,” said smith. “highlighting the family strain, and the sibling strain, and reintegration back into even your own community, activities, school systems, normalizing that.”
alongside awareness, the campaign is also geared toward driving research, investment, advocacy and policy change in the childhood cancer space because, as it stands now, it’s not enough.
childhood cancer receives only seven per cent of the investment from federal funding. while adult cancers do tend to have more need in terms of funding due to numbers, and childhood cancers fall under the “rare” category because there’s much fewer of them.
however, when looked at from a years of quality of life standpoint, that amount of funding is nowhere near where it needs to be.
“every life is important, but if we put our energy there, our children are taken care of, quality of life, childhood isn’t lost, and that whole continuum has a bigger impact rather than extending the years of a 70-year-old’s life. again, it’s not about the value of a life, it’s about that lifetime of the person,” said smith. “a seven-year-old that can get 70 more years of quality of life, that is a much bigger success to us.”
it’s not about taking away from other areas, but rather correcting the lack of investment that could enact real change for children who survive childhood cancers but have a worsened quality of life for the rest of their lives because of it.
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much of the research done on cancer is also thought to be interchangeable between child and adult cancers, but that’s simply not true. a pediatric-focused area is needed because children and adults are different in how they experience cancer, how they respond to treatments and how their bodies react after treatment is done.
“when we look at a child, especially a young child under the age of 15 or even younger than that, when they’re born and as they grow up, we put different soaps on their body. we’re advised to put baby soap on, and as well look into the treatments that we’re giving our children now, it is designed for an adult,” said smith. “their bodies aren’t prepared for it, so there’s a need for funding, which is a big part here, to say, how do we build better systems, better research and really focus on changing that funding amount?”
a national strategy for pediatric cancers, which would include social support systems as well as improvements in pharmaceuticals and biotech incentives, is required to underscore the importance of recognizing that these cancers deserve their own recognition.
by doing so, more clinical trials can be brought forward, along with newer drugs and therapies, while providing incentives to companies that don’t see childhood cancer as a lucrative business choice.
looking at the sheer and significant impact of childhood cancers on the child and their future, as well as families, shows that not enough is being done to support systems that meet the needs of the impacts, but change is possible.
the goal is to “create systems that support families as our healthcare and our research hasn’t kept up with it and it’s a big wake-up call. it really is to canadians across the country that there’s more behind this. it’s not always survivorship. that’s what we aim for, but if we don’t address the issue or the challenge, we won’t be able to fix the problem.”
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“how do we make this work? how do we make sure we’re saving those lives? childhood cancer as a whole is the leading cause of death by disease in canadian children. if that’s not a stat that says we need to do something, i don’t know what is,” said smith.
“our vision is that no childhood is lost to cancer, and the reason why we underscore the word childhood is that a childhood is more than just that child and what they see through their eyes. it’s everything. it’s the parents’ experience through that childhood … so our focus is making sure that everybody has that opportunity to experience childhood and grow all of the elements that are around it.”
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