A parent of two young children with a high-risk brain cancer diagnosis is very happy to see donation drives soar and yellow ribbons being worn during Childhood Cancer Awareness month.
I am aware of important story angles that are missing.
Childhood cancer is usually depicted as a disease of the body. Medical science has a problem that needs to be solved. Sometimes it is a person named Harry Potter. There is an evil addressed in hushed tones.
The true experiences of patients and their families can be found somewhere in between the two extremes.
On Christmas Eve 2020, our seven-year-old daughter had an emergency brain surgery to remove a small piece of her brain.
It was found to be a grade four glioblastoma, a cancer that is extremely rare in children and difficult to treat. Adults have a median survival of about a year.
In the months to come, we would discover that our five-year-old son also had a rare genetic condition that caused the cancer.
We were told earlier this year that our son had a brain cancer and that it was the same as his sister's.
Lynch syndrome is a genetic condition that causes aggressive cancer in children with an alarmingly high rate of probability and is often misdiagnosed.
Before cancer, there was no practical way to detect the disease, with no relevant history on either side of the family, and available testing options unable to pick it up.
Awareness campaigns rely on statistics.
The 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 a family grieving the loss of a child gone too soon.
There are incompatibilities of childhood cancer with expectations of social, cultural and economic life.
How many parents can't work? How much of the family's income is lost? How much time does it take to access treatments? There are many relationships that break down. Do you know how many careers end? There are impacts on mental health.
Kids are told that they are engaged in a battle, whereas in reality they are shadowboxing
Unless their house is a tent, Centrelink's maximum payment is not a living wage.
My family is very fortunate. We are able to work from home and live in secure accommodations.
We still need financial help from friends and family. We don't have a plan if our kids need hospital treatment at the same time.
When people in any category of disadvantage fall through the gaps of adequate social support, it's a sign that we need to improve.
Some of the ways we talk about childhood cancer are not in line with how we are forced to live with it.
Susan Sontag challenged myths and metaphors about cancer in the 70s. As part of a "you can beat this" attitude, defining childhood cancer through metaphor persists.
Kids are told that they are fighting, but in reality they are shadowboxing They aren't in control of the weapons that can hurt their opponent.
Our daughter was once encouraged by a doctor to name her cancer. The reality of an indifferent biological mass requiring surgery and treatment is frightening to me.
The body as a battleground is a more realistic metaphor for cancer and its treatment, but I don't think it's helpful for kids to see warfare as a way of dealing with illness.
There are fictions for parents. I am often told that what has happened to us is unfair and that we as a family deserve more than what has happened.
Our views on life and death are deeply cultural and, in many ways, inadequate
There is an obfuscation of agency when cancer is seen through a moral lens. When I hear about cancer being a cruel disease, I feel the same way. It makes a fake claim about what cancer is and expresses our frustration at how difficult it is to control.
I think we should focus on the agency of human beings in the story and what is within our power to change instead of constructing a malicious villain.
Many people have moral authority in addressing the health and social problems caused by childhood cancer.
Real people wield important powers that can be used to help or hinder the lives of cancer patients.
There are still many things that could be improved, even though I am grateful for the high standard of cancer care in Australia.
Funding constraints and the need for more infrastructure are obvious, but not the whole picture. Poor communication, hospital-wide inefficiencies, a lack of genuine approaches to consumer engagement and inflexible workplace cultures are preventing services from improving.
When something goes wrong it is often a survival instinct to just move on. We are in the middle of a lengthy journey.
The kind and passionate health workers who attend to my children's care clearly value theExperiential 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
Families caught in the natural disaster of childhood disease can easily be swept away from the safe but narrow precipice of society's constructed norm.
Our views on life and death are not in line with our culture.
For my kids to get the all-clear on their scans, for their treatments to work, for gentle ones to emerge, and for a cure to set us all free, I am always hopeful.
I am a realist and can see other situations.
Childhood is seen as an inevitable path to adulthood and death before old age is not true.
Illness and death at any age is both normal and sad, even if it is extremely sad and rare.
Some childhood cancer charities target anxieties about death as a way of attracting donations, and while this is helpful in one respect, it also contributes to a wide-eyed fear of childhood cancer as some kind of evil.
When I think about childhood cancer awareness, I see it as more than just statistics.
I try to imagine what it would be like to live through it.
These thoughts are mine, and I am still new to this journey. Childhood cancer sufferers will have their own perspectives to offer. It's a good time to listen.
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