fighting to end kids cancer
Faye Hollands is a passionate activist and advocate for childhood cancer research. Her family’s experience has touched many in the Illawarra, and each year the Shine Like Charli ball breaks its own fundraising records. But life and work wasn’t always like this for Faye.
Interview Duncan Rintoul
Main Image Andromeda Lembo @andromeda.lembo
[TW: This article contains discussions about cancer and mental health, which may be sensitive and potentially triggering for some readers. Please exercise self-care and discretion while reading.]
Tell us about your project?
I work for Children's Cancer Institute, where I'm the family relationship lead. This means I look after our family ambassadors – families like mine who put themselves out there to raise awareness about childhood cancer and the clinical research that the Institute does.
Some of our family ambassadors have lost a child, some haven't. But they've all gone through a horrible experience that you wouldn't wish on your worst enemy. And they want to share that story in the hope that it will make a difference to people that come after them.
How did you get involved?
My daughter Charli was diagnosed with leukaemia in May 2020. We’re now three-and-a-half years post-diagnosis, and still living and breathing it every day.
Charli was nine at the time, and our lives just turned upside down. We knew nothing about childhood cancer at that point. I don't think we really even knew that kids got cancer. I mean, I suppose theoretically if we if we thought about it, we knew, but we had no experience. We entered this world that we knew nothing about and it was an absolute tornado from the very beginning. Friday night we were in Wollongong Hospital. Saturday we were up at Sydney Children's Hospital and that's where we spent a good proportion of the next year.
Six months in we decided – with Charli's agreement, of course – that we would start to share her story on Facebook. No one around us had really any idea of what we were going through, so it was partly a way of letting them know and educating them. But we also felt like more people needed to know about what families like us were going through every time we stepped into Sydney Kids and into this kind of war that no one ever, ever wants to be a part of.
And it really just gathered speed from there. The community rallied around us – people wanted to know more and they wanted to help. So we started fundraising for Convoy and for a whole heap of other charities, and we focused on growing awareness and advocating for better treatments for children with cancer.
Why the focus on research?
After things settled a bit and we were dealing OK with the cards we've been dealt, research into childhood cancer became really important to me.
The cancer treatments that many children are given date back to before man landed on the moon, and they were developed for adults. They're incredibly toxic, and they can leave lifelong side effects. Despite childhood cancer being classed as rare, we need to do everything we can to make sure that little bodies don't go through what they're going through.
Clinical research is expensive and it takes some very smart minds to create new cancer drugs. It also takes a lot of time to get them approved for use – from bench to bedside. There’s a phenomenal team working on this at the Children's Cancer Institute, some of the brightest minds achieving amazing things. Raising money and awareness means we can get more researchers working on these critical projects, finding those results quicker.
What’s the impact you are aiming for?
It's a real honour to be able to looks after our families – to make sure that their experience with the Institute is a positive one, and that by being given a voice to share their child's story they feel like they're really having an impact.
Being a family ambassador can be a tough gig and going on radio or TV is not as glamorous as it sounds. But, for us at least, being able to share our story really gave us a sense of purpose at a time when everything else was falling apart. We’ve always said that if sharing Charli’s story helps just one other family know that they’re not alone, and feel like there’s hope and light at the end of the tunnel, then it will all have been worth it.
Sometimes there’s trauma in reliving your story, but in the bigger picture if that educates people and moves them to action, that’s the ultimate goal. Not just wrapping around oncology families that have been through the wringer but getting the community and networks around us to go: ‘OK, we want to help. We don't want other children like Charli to go through this. What can we do to make a difference?’
What have you appreciated about the Coal Coast community on this journey?
We’ve raised over $380,000 so far, and most of that is from the Illawarra community. We've seen some amazing generosity and kindness in our community – people have really backed us in.
In talking to other families in Sydney Kids, no one else in our oncology family had the kind of network and community that banded around us in the Illawarra. Even though we’re a city, it’s like we have this rural community connection where people get behind you. They hear your story and get to know you as a person, and then food just turns up on your doorstep and there's people being really kind and caring and considerate.
The Illawarra Convoy ties into that too. You know, there were no other oncology families that had something similar to Convoy happening in their local area: a charity supporting them practically with their bills and their grocery and their petrol while one or both parents had to give up their job.
People in our community are incredibly helpful and want to support. Rather than feeling sorry for you and kind of helpless, people in the Illawarra love to pull their finger out and do something about it. The support’s been phenomenal.
How did you make the career switch to working with the Institute?
When Charli was diagnosed, I was absolutely in love with my two businesses. I worked from Charli’s bedside for probably about a year post diagnosis. I’d worked through the global financial crisis, I'd gone through all these ups and downs over 17 years, and it was never on my radar to shut my businesses down. The thought of that at that time would have been heart breaking.
But once the dust started to settle on the treatment and we began to find our new normal, I found that my passions had completely changed. I am firm believer in being in a job that you love. To be at your best, you’ve got to want to get out of bed for it in the morning and look forward to doing the work that you do, and if you don't feel like that then you need to make a change. My first business was in career coaching, and I’d been teaching and speaking on all these things for years. I just hadn't anticipated that story being me!
“The cancer treatments that many children are given date back to before man landed on the moon, and they were developed for adults. They’re incredibly toxic, and they can leave lifelong side effects. Despite childhood cancer being classed as rare, we need to do everything we can to make sure that little bodies don’t go through what they’re going through.”
It took a bit of time to build networks and connections and get involved in different things that positioned me to get to know people in the Institute. It wasn't overnight – it was a process of me realising that there needed to be a career change for me, and then making it happen.
What nuggets of wisdom can you share with other budding changemakers?
Don't be daunted by your goal feeling insurmountable. Find a big, hairy, audacious goal that you really want to go after, and just start chipping away. For us, the big vision of curing childhood cancer and finding safer treatments for little bodies – that’s huge. I'm not a clinician, I'm not a researcher, I could easily have got stuck thinking ‘how on earth could me and my little family have any impact on that big goal?’. But the reality is we are. It's about the collective coming together.
So don't underestimate the ripple effect that you can have. You don't need to create a tsunami wave of change all by yourself. If all of the people who are passionate about a project can band together in some way, or you can build your community to support you, you can achieve amazing things.
And don’t be afraid to ask. What I've been constantly surprised by over the last three-and-a-half years is how many times people have said yes, in all manner of different ways. You need to have the cheekiness to just ask and realise that it won't hurt if they say no. In all of that time of fundraising we've had a lot of amazing yes’s, and hardly any no's. We’ve built some phenomenal friendships, we have a brilliant committee in Shine Like Charli, and the community just that keeps saying yes to us. So just don't be afraid to ask. People are generally much better than we give them credit for.
To track along with Faye, follow Shine Like Charli on Facebook or @shine.like.charli on Instagram, or visit the website
For more information or to donate, visit the Children’s Cancer Institute website
If you are struggling with cancer or mental health issues, you are not alone. If you need support, we encourage you to seek professional assistance. Cancer Council 13 11 20 Lifeline 13 11 14