Ken's story

*Speech delivered on 7th February 2023.

Tonight I'm presenting a speech written by Ken Fleming, father of Jack, who passed away at 21 from brain cancer.

While this isn't an easy speech to read or hear, it's too important not to. This is Ken's story:

'Brain cancer kills more Australian children than any other disease. It also kills more people under 40 in Australia than any other cancer.' I didn't know this. I naively thought leukemia was the no. 1 killer of children in Australia. My brutal awakening started on the evening of Saturday 28 May 2016. My son Jack, who was 19 at the time, complained of a headache. My wife, Dianne, told him to take a couple of panadol and lie down. We didn't think anything of it. That night he had his first seizure and spent the night in hospital under observation.

Several tests later, including a biopsy on 6 July, we met with his neurosurgeon, Andrew Hunn, on 8 July. Andrew sat directly in front of Jack and said: 'I am afraid I have bad news for you, Jack, and wish there was some other way to tell you, but you have brain cancer. And it is terminal. It's called glioblastoma multiforme, or GBM, and it is stage 4.' Jack didn't say a word. I could hear Dianne's breathing but not my own. I'd stopped breathing. I said, 'How long?' He said a year, give or take a month or two.

We got 22 months.

Jack said, 'All I want to do is live.' I knew I would do everything in my power to make that happen. But I didn't. I couldn't. As a parent, I felt my greatest failing was my inability to prevent the death of my child. A chance meeting with Professor Manuel Graeber gave a glimmer of hope. He was surprised that someone so young was diagnosed with such an aggressive form of brain cancer.

Collaborating with Dr Michael Buckland, they conducted molecular testing of Jack's tumour, a procedure that is not routinely used in Australia for brain cancer diagnoses. The original diagnosis was confirmed, along with a number of factors and unique markers that led to a new treatment regime and access to antibody drug ABT-414.

While Jack was alive, we invested in a whisky company, and while I have now sold it, the new owners will be dedicating a barrel, with all the bottles to be auctioned to raise money to help fund the testing facility. After Jack died, I wrote a book—Jack's Story. It's not a fairy tale; it's a tale in search of a solution.

Leukemia, breast, cervical, prostate and bowel cancers, amongst others, have experienced major breakthroughs in recent years and may not be a death sentence. However, brain cancer survival rates are low and have hardly changed for 30 years, despite significant increases in survival for Australians diagnosed with other types of cancer. Since Jack died, I have been collaborating with the Royal Prince Alfred Hospital, Sydney University and Sydney Local Health District to establish a molecular testing facility in Sydney for brain cancer patients. Together a formal submission was made to the former health minister to establish the facility, along with a letter I wrote, a copy of Jack's Story and a T-shirt. The T-shirt had a picture of a tattoo on the front—"the tattoo that never was"—and a picture of Jack on the back—"the boy who is no more". His response was an invitation to Canberra to discuss our proposal. I had many discussions with the former health minister subsequent to that and have a photo of him wearing Jack's T-shirt on a run around Lake Burley Griffin. Unfortunately, COVID got in the way and everything was put on hold.

I wrote to the new minister for health, Mark Butler, on 11 July 2022 and enclosed a copy of my submission for the facility in Sydney, my book and a T-shirt. I also told him of the three pioneers of Australian whisky—Bill Lark, of Lark Distillery; Casey Overeem, of Overeem Whisky; and Patrick Maguire, of Sullivan's Cove—and our joint project to auction bottles of whisky from the first whisky barrel we produced to raise money for the research facility in Sydney.

Minister Butler's response was perfunctory, patronising, dismissive and discourteous, and he made no acknowledgment of the submission, which was authored by three prominent organisations, all of whom are directly or indirectly involved in brain cancer research. There was no thankyou for the book or T-shirt and no acknowledgment or even encouragement for the proposed auction of whisky bottles or the cause it was supporting. The response from Minister Butler was a marketing opportunity about all the wonderful things that 'this government' is doing in brain cancer research.

I also wrote to Senator Ruston, shadow minister for health and aged care, but only received a cursory acknowledgment.

The reason I approached Senator Lambie was that I needed someone who was principled, fearless and equally passionate about children's health to ask the minister the following questions—

These are the questions:

1. Why was such a well-thought-through and considered proposal to establish a molecular testing facility, authored by three prominent Australian organisations, completely ignored?

2. Was my book read?

3. And maybe a word of support to three iconic Australian whisky brands to raise money wouldn't have gone astray?

I have similarly written to the Minister for Health in NSW in 2022, and at least Minister Butler is one step ahead, as I have received nothing from Brad Hazzard.

I'm not special, just a father who lost a son, and, like many parents, I just want to do something that might save another child's life. Seven million dollars—

We're talking about millions, not billions—

is desperately needed, and maybe a conversation between Brad Hazzard, Mark Butler and the three organisations I have been collaborating with might find a way forward to fund a molecular testing facility and help me find solace knowing that I may have helped save a life, and the universe will be back in balance again.'

That is Ken's tale. I know he's not the only parent to lose a child to cancer, and he won't be the last, and that thought just breaks my heart. I know that we've been talking about cancer up here, and it's really hard when someone passes, but I think that we all have to admit that what really, deep down, pulls at the heart strings is when it involves our kids, whether they're kids of disadvantage or kids that are sick and dying. Let's be honest here; it really does pull at our heart strings. I'm asking the Labor Party to please look at this. It's $7 million. If we don't have one of those facilities, we need one, and it's not a lot to ask.

I will see Minister Butler, but I did promise Ken I would tell his tale, and I have done that to pay respect to his son. Once again, I'm sure, Minister Butler, that you'll hear this. I'm hoping that you could just do the right thing and contact Ken—he's been through enough—and at least show your support and talk to him. That is all I'm asking for, and I think, out of respect, Ken and his family deserve that.

But it's not just that. If that $7 million does this and we can help other kids in the future, whether it's to even slow down the progression and give them a longer life, then for seven million bucks we're not asking a lot.