The not-so-quiet Australian

The not-so-quiet Australian

Karl Fretwell shares a few home truths with parliamentarians about kids' cancer. We share the speach he delivered on Tuesday 10 September 2019. 

Karl Fretwell addressed Federal Politicians including Minister for Health, the Hon. Greg Hunt, in Canberra on Tuesday 10 September 2019.

The Penrith dad was invited to speak at two events coordinated by The Kids' Cancer Project in honour of Childhood Cancer Awareness Month. He not only spoke about his daughter's cancer journey, he also shared a compelling point of view on media coverage of kids' cancer and federal funding to find solutions. Read the full speech here and discover that despite it all, Karl and his wife Olivia have a great deal of hope in a better future. 

Thank you, Owen, for the invitation and opportunity to come and share our precious daughter Brooke’s story and provide insights from us as bereaved parents. This is my beautiful wife Olivia and we love nothing more than talking about and hearing Brooke’s name mentioned.

I’m sure most of you here tonight have children or grandchildren and I’m sure you will all agree there is nothing more important in your life than loving, caring, protecting and nurturing them. Everything changes in your life when you bring a child into the world!

Please take a moment to pause and think of the terror, horror, anxiety and fear a parent goes through when they hear these words:

“Your child has cancer.”
“Your child has a two – five-year life expectancy.”
“Your child’s brain tumour has returned.”
“Your child has an untreatable brain tumour and has a nine to 12-month life expectancy.”

When you hear these words as a parent, everything changes in your life instantly. Everything!

Brooke’s story

Our precious daughter Brooke was born 6 July 1999 and passed away 4 January 2015. It has now been 1,710 days since she took her last breath and went to heaven.

She was the most selfless, courageous and loving young lady you could ever wish to have known. She loved to bake and spend time in the kitchen with Olivia, attended folk art classes, attended and compete at swimming club and, most importantly, was a season ticket holder and loved to go and watch the mighty Penrith Panthers.

Brooke battled children’s brain cancer three times in her short life. First at age two when as parents we were told she had between two and five years to live. Then again at age five when we thought the prediction the doctors had given us was becoming reality.

But Brooke and the team at The Children’s Hospital at Westmead were fighters and were not going to give up easily.

We then had a nine-year respite thinking Brooke was one of the lucky one in five children who survive children’s brain cancer (survival means living for five years post-diagnosis). Brooke had some hearing and learning disabilities from her previous treatment, but it never held her back from doing anything she wanted to do in life.

Just after Brooke’s fourteenth birthday, she became unwell again and Olivia and I thought it was a problem associated with the cerebral shunt she had inserted in her brain when she was two years of age.

Unfortunately, this was not the case and within seven hours of entering Westmead Hospital’s emergency department we were informed Brooke had been diagnosed with the worst form of children’s brain cancer, DIPG (Diffuse Intrinsic Pontine Glioma).

Brooke was a fighter but DIPG is a death sentence for children and she was given nine to 12 months’ life expectancy!

While all options were tried to beat this hideous disease including a world first gene therapy clinical trial supported by The Kids’ Cancer Project, Brooke passed away 14 months later.

The harsh reality of childhood cancer

Brooke was a patient at The Children’s Hospital at Westmead for 13 years and had to endure numerous medical procedures unimaginable to most people. She had:

  • Six open brain surgery operations

  • Six other general operations             

  • 40 doses of radiotherapy to her brain

  • 20 doses of chemotherapy

  • Gene therapy clinical trial (six months)

  • 50-plus MRI scans

  • 20-plus anaesthetics

  • 20-plus blood and platelet transfusions

That is just a small summary of the treatment Brooke received and she handled it all with grace, courage and strength.

Watching your child’s body slowly break down piece by piece, knowing you are not in control or able to fix things, is something no parent should have to experience.

The majority of times I see a story in the media of a child suffering from cancer, it is an image of the child smiling or laughing or playing happily. Unfortunately, this infuriates me as the child probably feels like this one per cent of the time while battling cancer.

In Brooke’s last six months of life, her body started to break down piece by piece. She started with blurred vision, then poor balance, then seizures, then struggled with speech, then struggled with movement of her left arm, then struggled with swallowing food, then lost the ability to walk, then lost the ability to totally speak, then lost the ability to swallow anything and eventually at 1.45am 4 January 2015 lost her ability to breath.

Throughout all this, up until the last couple of hours, we were able to communicate with her through constantly evolving systems we put in place. The truly heartbreaking thing about this is Brooke was totally conscious throughout of what was going on with her body. These images of her suffering live with Olivia and I every minute of every day.

Through organizations like The Kids’ Cancer Project and the clinical trials and research they fund, we as parents were provided with hope! And when your child is diagnosed with cancer this is exactly what you are searching desperately for. Hope. We probably got to spend an extra three to four months with Brooke and at the same time, with Brooke’s agreement, have provided insights to the researchers on the effectiveness of the clinical trial.

A fair go

Olivia and I are just two of the millions of “quiet Australians” as described in the recent federal election living out our lives in Penrith, Western Sydney. It’s not very often the quiet Australian’s voice gets to be heard here in Parliament House. So, I am going to spend a few minutes expressing our thoughts as grieving parents of a precious child who died from this hideous disease - children’s cancer.

I’m going to focus my comments in the context of “fairness”, “fair go”, “aspiration”, “a fair and just society” to keep things relevant to the current political landscape.

As already mentioned, 150 Aussie kids die every year from kids’ cancer but worldwide that figure 90,000. Yes 90,000!

I can honestly say I have never seen a frontpage story or news headline saying another 150 Aussie kids are dead or 90,000 kids are dead worldwide from biggest killer of kids by disease.

I really struggle to understand why the media are virtually silent on this issue, and as mentioned earlier, when there is a story it’s of a smiling balled headed kid!

I have never heard a question in Question Time about, “what are we doing to increase funding of the biggest killer of kids by disease in Australia?”.

Imagine if this was 90,000 children starving to death in a Third World country - we would be providing hundreds of millions of dollars in relief. How is this fair that we do not make this a priority for children’s cancer?

As a “quiet Australian” I am interested in what the media and politicians become obsessed with in their day to day lives and where that fits in with what is happening in our “quiet Australian” life.

Here are a few from the last 12 months that the media have been obsessed with while being basically silent on children’s cancer - the biggest killer of Aussie kids by disease:

  • Adani Coal Mine (and the good old grey-throated finch!)

  • Illegal pill testing. Six people died taking illegal drugs in six months. In six months, 75 kids died from cancer. I didn’t hear that from the media! Is that fair?

  • Global warming / climate change

  • Same sex marriage

  • Australia Day debate

  • Border security

  • Oh yes, and my latest favourite, the Prime Minister’s department office toilet signs!

Seriously, you have to laugh, but the media are fascinated by this, I wish they would get fascinated about kids’ cancer!

I keep asking myself these questions, in the last ten years how many children have died from climate change? And in the next ten years, how many kids are going to die from climate change?

I keep coming up with the same answers, zero. Zero.

Then I ask myself, how much Federal Government funding has been spent on climate change initiatives in the last ten years? And it is $40 billion. That’s $40,000 million.

In the last ten years, how many Aussie, kids have died from cancer? One thousand five hundred and one million worldwide. How much Federal Government funding has been spent specifically on children’s cancer research? Seventy-five million dollars.

$40,000 million spent on zero deaths versus $75 million on 1,500 deaths.
Why are people not gluing themselves to the streets? Why are Greta Thunberg’s parents not saying, “Hey darling 90,000 children worldwide are dying every year from kids’ cancer, let’s get out there and raise awareness of children’s cancer”.

It’s very sad!

Thoughts on an alternative budget

As a “quiet Australian” I constantly follow what our Government spends our taxes on. I do this and consider the fairness of the distribution of funds versus what funds are provided to children’s cancer research.

  • $50 billion spent on 12 new submarines. Really?! Buy ten, there’s $8.3 billion! Ala kazam!

  • $7 billion on six long-range drones. Buy five! Another $1 billion.

  • $3.5 billion per year – yes, per year - on the Climate Solution Package which is not going to save any kids lives this year next year or the year after. That’s $3,500 million versus $10 million on the biggest killer by disease of Aussie kids!

  • February 12 this year - $26 million for new fathers struggling with the arrival of a new child!

Australia is one of the wealthiest nations per capita in the world and there is no reason why we should not be leading the way with government funding for medical research. Especially children’s medical research. Australia could and should be the Silicon Valley of medical research.

As a nation with a strong economy and 29 years of uninterrupted economic growth we need to stand for something that will make a difference not only in Australia but around the world. Ninety thousand children dying every year from this hideous disease is a pretty good incentive.

Our Government having very generous incentives for our brightest students to take up degrees majoring in medical research is something that could accelerate discovering a solution to children’s cancer and many other diseases. Science is the Solution.

Science equals research, equals clinical trials, equals cures.

Organisations like The Kids’ Cancer Project are making a difference by funding research and are providing kids and parents hope of a future without children’s cancer.

I will finish on this last note. I also believe in miracles.

I’m certain that if the media reflect on the fairness of their coverage of kids’ cancer and the government consider the fairness of funding, we can achieve this miracle of finding a cure for all children’s cancers sooner rather than later!

Thanks again for the opportunity to openly and honestly share our very sad but inspirational story about our precious daughter Brooke.

No child or parent should have to experience the horror of this hideous disease.

I would also like to publicly thank my beautiful wife Olivia for the love, care and support she provides me every day.

All we want from our lives now is to honour Brooke in everything we do, it was a privilege and an honour to be her dad and mum!



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