The hidden impact on kids whose parents have cancer
There is no doubt a childhood cancer diagnosis can stop a family in its tracks. No-one expects it and no-one would wish it on someone else. The diagnosis is often just the beginning of what can be a long and overwhelming experience as parents struggle to come to grips with what their child is facing and immediately go into survival mode to ensure their unwell child is given the absolute best chance of a good outcome.
It’s exhausting and heartbreaking and the reality for just over 750 families each year in Australia.
Of these diagnoses the majority will be in children under the age of 4 and, a slight majority of these, will be little boys. These children join a further 9,500 kids (that is children aged 0 – 13) who are managing the daily ups and downs that come with their own personal diagnosis.
While it may seem like a strange thing to say, there is good news in this area as, thanks to advances in treatment over the last 35 years, over 80% of kids who are diagnosed with a cancer go onto to experience all life has to offer following their diagnosis, and are cancer free five years later.
In this context we need to acknowledge the important role access to engaging services, programs and resources plays in helping kids through their own diagnosis. Whether it’s our amazing medical facilities, the work we and organisations like Starlight do with kids in hospital, or our out of hospital programs like our Camp Quality Primary School Education Program or our Camps, or the work of organisations like Make A Wish as they bring dreams alive: in every instance these opportunities play an important role in helping children facing their own diagnosis make sense of their world and still embrace and experience a sense of normality as a kid.
While much has been done to ensure our kids who have their own diagnosis are supported there is another group of kids for whom a cancer diagnosis is still life altering: it stops their family in their tracks and leaves them realing yet for these kids: that is the ones who are impacted by the diagnosis of their mother or father, there are very few tailored and easily accessible services.
Current statistics indicate 1 in 2 Australian adults will be diagnosed with cancer by the time we are 85 and, while that seems to be a staggering number for us as adults to comprehend, the reality is the number increases exponentially if you extrapolate it to calculate the number of children who will be impacted by these adult diagnoses.
Indeed we conservatively estimate approximately 40,000 children under the age of 13 are learning that their mum or dad has been diagnosed with cancer every year in Australia.
The worrying news here is that there really is very little news to tell at all. This group of kids has, to date, been largely hidden and left to make sense of the experience through their parent’s eyes.
At least that was the case until we became the first organisation in the world to launch an innovative new app to help kids make sense of cancer. Launched in 2016 the Kids Guide to Cancer app was the first of its kind internationally. Using kid friendly language and engaging illustrations, The Kids Guide to Cancer app helps kids understand what cancer means for both them and/ or someone they love. It answers questions such as: What do treatments look like? What happens in hospital? What places can I go for help?
And while we know it’s good: because our kids tell us it is … we were also excited to see our app recently reviewed in the Journal of Clinical Oncology in the USA where it was give a wrap as being “one of the best apps of its kind”.
The app was only the start of our work in this area though and so it was with even greater excitement that I’ve watched our team embark on an ambitious and bold project: to bring all we have learned through the running of our Camps over the past 35 years to the table to develop an entirely new camp model that is specifically designed for the kids we call our KICC crew (that is Kids Impacted by a Carer’s Cancer).
With the first pilot camp having now happened in WA in May of this year, and our next due to run in September (again in WA) the early feedback has been amazing. Kids report feeling like they finally fit: “I didn’t realise there were other kids like me”; while parents welcome the chance to take a break and to know their child is in a safe space with people who understand them: “I dropped off one child and picked up a completely different one. She had never spoken to anyone about my cancer diagnosis before. By the time I came to collect her from Camp she was running into my arms and thanking me for having allowed her to attend.”
We know we still have a way to go: two pilots are just the beginning, but we are excited and 100% committed to continuing to pursue what we think is a completely achievable vision for our world.
That is that the work we do helps ensure every child who is impacted by cancer is given every opportunity to just be a kid again.
Thank you in advance for joining us in that mission.
To find out more about our any of the services or programs discussed in this article please visit campquality.org.au.
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