I’m a parent of two children with a brain cancer diagnosis. We’re in the middle of a long and tiring journey
As a parent of two young children with a highrisk brain cancer diagnosis, it’s wonderful to see donation drives soar and yellow ribbons promote empathy for my family’s situation during childhood cancer awareness month.
However, I’m also acutely attuned to important story angles that seem conspicuously absent.
Childhood cancer is often depicted as purely biological. A problem for medical science to solve. But sometimes it is Voldemort. An almost unspeakable evil addressed in hushed tones through abstraction and metaphor.
Somewhere in between these two extremes lie the true experiences of patients and their families.
Our story
On Christmas Eve 2020, after experiencing some worrying headaches, our seven-year-old daughter underwent an emergency craniotomy to remove a lesion detected on the right-hand side of her brain.
It was revealed to be a grade four glioblastoma, a cancer extremely rare in children, very difficult to treat, and with a high chance of recurrence. Median survival in adults is about 12 months.
Additionally, it was found that a rare genetic condition had caused the cancer, and in the months to come we would discover that our son, at age five, also carried the condition.
Earlier this year we were told that our son had developed a brain tumour with the same pathology as his sister’s.
Constitutional Mismatch Repair Deficiency (CMMRD) is a recessive genetic condition related to Lynch syndrome that causes aggressive cancers in children with an alarmingly high rate of probability and is often misdiagnosed or undetected.
There was no practical way we could have detected CMMRD before cancer, with no relevant history on either side of the family and available prenatal testing options unable to pick it up.
Selective statistics
Statistics usually form the basis of awareness campaigns.
Rates of incidence, survival and mortality are humanised through personal stories, such as a child’s formative years given over to harsh and extended treatment cycles, or of a family grieving the loss of a child gone too soon.
What is rarely mentioned however are the incompatibilities of childhood cancer with the everyday expectations of social, cultural and economic life.
How many parents or guardians lose the ability to work? What percentage of the family income is lost? How much travel time is spent accessing treatments? How many relationships dissolve? How many careers are ended? What are the impacts on mental health?
The maximum Centrelink payment for a carer of a child with cancer is far from a living wage – unless their house is a tent.
My family is probably one of the lucky ones. We are flexibly employed, and live in relatively secure accommodation.
Yet we still require regular financial help from charities, extended family, friends and kind strangers. In the case that both our kids may need to receive hospital-based treatment at the same time, we simply don’t have a plan beyond GoFundMe.
Where people in any category of disadvantage fall through the gaps of adequate social support is a sure sign that some aspect of our society is fit for improvement.
The things we say
Some of the abstract ways we choose to talk about childhood cancer are absurdly different to how we are forced to live with it, and this can make life harder for everyone involved.
Famously in the 1970s, the writer and activist Susan Sontag challenged ways in which myths and metaphors about cancer contribute to the suffering of patients. Yet defining childhood cancer through metaphor persists as part of a “you can beat this” attitude that I suspect is mistakenly associated as promoting resilience.
Kids are told that they are engaged in a battle, whereas in reality they are shadowboxing. They’re simply not in control of the weapons that can harm their opponent.
A doctor once encouraged our daughter to name her tumour, as if to personify the enemy within. To me that seems a whole lot scarier than the reality of an indifferent biological mass requiring surgery and treatment.
The body as a battleground is perhaps a more truthful metaphor for cancer and its treatment, but generally I see depictions of warfare as unhelpful for kids, especially when we simultaneously encourage them to understand and accept the reality of their illness.
Well-meaning fictions are also offered to parents. Going thorough this journey, I am often told that what has happened to us is “unfair” and that we as a family “deserve more” than what the hand of fate has delivered.
While I appreciate the underlying sentiment, there is an obfuscation of agency going on when cancer itself is viewed through a moral lens. I see the same thing as happening when I hear about cancer being a “cruel disease”. It expresses our frustration at how difficult cancer is to control, but it also makes a fictitious and terrifying claim about what cancer is.
Instead of constructing a malicious villain out of childhood cancer, I believe we should focus on the agency of human beings in the story and what is within our power to change.
People power
Unlike the disease itself, plenty of people have genuine moral agency in addressing the health and social problems arising from childhood cancer.
Be they medical scientists, clinicians, health administrators or policymakers, real people wield extremely important powers to help or hinder the lives of cancer patients, and often these powers are executed unfairly.
While I’m extremely grateful for the high standard of paediatric cancer care in Australia, there are still many things that could be improved.
Funding constraints and the need for more infrastructure are obvious but not the complete picture. Poor communication, hospital-wide inefficiencies, a lack of genuine approaches to consumer engagement and inflexible workplace cultures all prevent services from improving.
As parents we can only do so much, and when something goes wrong it’s often a survival instinct to simply move on. We’re in the middle of a long and tiring journey.
The kind and passionate health workers who attend to my children’s care clearly value the experiential knowledge of their patients and their families, but there simply aren’t enough practical systems in place to extract this knowledge and put it to good use.
Facing our fears, shifting our norms
Families caught in the natural disaster of childhood disease can easily be swept from the safe but narrow precipice of society’s constructed norms, and some of these norms are less obvious than others.
Our views on life and death are deeply cultural and, in many ways, inadequate.
I am forever hopeful for my kids to get the all-clear on their scans, for their treatments to work, for gentler ones to emerge, and for a cure to set us all free.
However, I am also a realist and can easily see other situations unfolding.
We tend to view childhood as an inevitable pathway to adulthood and death before old age as an aberration to the natural order of things, but rationally neither of these things are true.
Childhood need not be defined in relation to some uncertain future, and illness or death at any age is both natural and normal, even if it is extremely sad and relatively uncommon.
Some childhood cancer charities target anxieties about death as a way of attracting much needed donations, and while this is helpful in one important respect, it also contributes to a wideeyed fear of childhood cancer as some abomination or spectre of evil.
When I think about childhood cancer awareness, I equate it with much more than horrifying statistics feeding donations to medical research.
I try to imagine everything that can be gained from the lived experiences of those who face it.
I am still quite new to this journey and these thoughts are my own. Others facing childhood cancer will have their own differing and valuable perspectives to offer. Now is a great time to listen.
• Dominic Santangelo is an Australian communications specialist and parent to two young people living with cancer and rare disease
Kids are told that they are engaged in a battle, whereas in reality they are shadowboxing