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There are many people who don’t want to hear the Darvell family’s story. It hurts too much to think about sick children, let alone really sick children. But those who scroll on miss out. Because the Darvell’s story is not just a sad or cautionary tale. It is a love story. Love, not as a feeling, as we so often think of it, but as an action. Love, which doesn’t know lengths it will go to, until it has no choice but to go there.
“It doesn’t feel rare when it happens to you”
Before his fall, Henry was the most active of Alex and Mark’s four children.
“He was always climbing things, running, jumping, just being really, really hands on. He was a handful,” Alex says.
So, when their two-and-a-half-year-old tripped and hit his head at the park, his parents assumed their energetic little boy was just a bit wobbly on his feet.
When they took him to the hospital, Alex and Mark were told he was concussed, and Henry was promptly discharged. But within 12 hours their son took a turn for the worse.
By the time Alex got him back to the Gold Coast University Hospital, Henry was constantly vomiting, he could barely walk, and he was turning grey.
The emergency care team immediately put Henry through a CT scan.
Immediately after the scan, Alex watched the doctor putting a canula into Henry’s arm get a call from the radiation department.
“I could tell by the look on her face something was wrong. I insisted she tell me. She said Henry had a tumor in his brain. I felt like a floated away. I didn’t even feel like I was in the room anymore.”
“I know that it’s out there… that kids get cancer, and it’s always described as being rare. But it doesn’t feel rare when it happens to you,” Alex says.
“Every time we did a scan, more things would pop up”
That conversation marked a new era in the Darvell family’s life.
For Alex, it was the first trickle of a stream of never-ending appointments, her maternity leave now indefinitely extended.
For Mark, it meant tag-teaming with Alex at the hospital on the days he wasn’t at work, and his nights catching up on more work.
For their other children, it meant less mum and dad to go around.
And, for Henry, it meant treatment.
But while Alex and Mark poured everything they had into that treatment, they haven’t yet had the joy of watching Henry get better and stay better.
The surgery to remove his tumour involved cutting through Henry’s cerebellum. Overnight, their once boisterous boy lost all the skills he’d spent his little life learning.
“He couldn’t walk, talk, eat, drink, swallow… he couldn’t move a muscle for quite a few weeks. He had to slowly relearn how to do all that stuff.”
Then came the chemotherapy.
“The kids are getting the same chemo as adults. And, in some cases, they give kids stronger doses because they know kids are resilient and it gives them a better chance. It’s a really harsh treatment, and it does devastating things to them.”
Three months after his surgery, Alex and Mark got more shocking news.
Henry’s initial diagnosis, a medulloblastoma with a 90% survival rate, was incorrect.
Further analysis of his tumour revealed it was an Atypical Teratoid Rhabdoid Tumour (ATRT) – a rarer type of cancer with a higher likelihood of coming back, and a 30% survival rate.
Henry was immediately taken off chemotherapy and given radiation treatment, where had to be sedated every weekday for six weeks.
His radiation was followed by three rounds of high-dose chemotherapy – each round brought on a wave of painful side effects.
“The treatment gave him ulcers from his mouth to his intestinal tract. It’s painful, our kids end up on IV nutrition because they can’t swallow anything, they just vomit it straight up.”
“For every two days of chemo, he’d spend three weeks recovering. There were days where he’d have to be bathed from head to toe every six hours to stop the drug seeping through his skin and giving him a chemical burn.”
And, just when Alex and Mark thought the worst of it was over, Henry developed radiation necrosis.
“He was using a walker, in a few months he would have been walking on his own, and then overnight he couldn’t use his leg or hand.”
“Slowly but surely, he regressed back to where he was post-surgery. He couldn’t move a muscle.”
“Every time we did a scan more things would pop up. We’d deal with one thing, then there would be more symptoms of something else. It’s been a really, really hard 15 months,” Alex says.
The worse their circumstances, the better they become
Yet, whenever a new challenge comes, Alex and Mark wearily rise to meet it.
Once a retail manager, Alex has become a health professional in her own right. For Henry, she’s a physiotherapist, a speech therapist, and a nurse.
“You’re the best chance they have to get better. They can’t talk for themselves; he can’t say, ‘Mum I need some physio today’. You’ve got to know what he needs.”
“I was his nurse on the days when he didn’t want a stranger to treat him. I learned how to do his obs and use the IV machine, because it saved him that little bit of stress that day.”
“I had no idea about any of that stuff, you just learn it so you can give him the best chance.”
“Before this, I didn’t feel comfortable in a hospital but now it’s my second home,” Alex says.
Meanwhile, Mark crams his full-time job into three days a week.
“That’s a sacrifice he has to make to keep his job and to provide for his family. It’s a lot of pressure for him.”
“When he goes to work and I go to a scan, there’s always the possibility our lives could be turned upside down and he won’t be there. So, he goes in feeling anxious all day and is just sitting there waiting for me to update him and say everything is okay,” Alex says.
Cautious hope amidst immeasurable uncertainty
In the face of a thousand unknowns, Alex has cautious hope for Henry’s future.
“We like to focus on his recovery. But it’s going to take time.”
“While he has no evidence of disease since surgery, they find it hard to tell the difference on an MRI between radiation damage and the tumour coming back. Two years post-treatment is usually when it comes back. He’s now in the highest risk of recurrence at six months post-treatment.”
“I’m really hopeful that things are going to be better now. It’s a daunting thought but, I look at it like he’s got a year and a bit to be prepared for school,” Alex says.
Until then, their family’s life is both chaotic, and at a complete standstill.
Days rush past, packed with appointments, school runs, shopping, lunchboxes, washing, and all the other tasks that leave parents slumped on the couch at night, too tired to cook for themselves. Yet the weeks between scans and results, and the months between treatment and milestones, they stretch out like an eternity.
“It’s going to be a long time before we ever feel safe and that it’s not coming back. It’s hard to feel positive all the time,” Alex says.
And it’s true, the Darvells are not always positive. Often, they are overwhelmed, exhausted, scared, angry, sad, and hurt. And that’s okay. Because in their story, love is not a feeling, it’s an action.
As anyone who’s spent time in regional Australia knows, there’s something special about country communities.
The road to Goondiwindi (or “Gundy”, as local residents call it) in the Darling Downs is instantly recognisable, as it’s lined with little buds from the local cotton industry. The people are warm and friendly, and everyone pulls together, whether it’s to offer lifts or to raise money through regular fundraisers.
Avril, a retired cattle farmer in her eighties who still splits up her own firewood with a saw bench, has lived in the area for more than half her life, and exemplifies country spirit.
She still volunteers at her local Driver Reviver site and delivers food for Meals on Wheels.
She has also donated regularly to Cancer Council Queensland since 1992 yet refuses to take credit for her incredible contribution.
Avril says, “At the time, my husband and I just decided we should start supporting something we may need, and other people do need.”
“You can’t give to every charity as much as you would like to. You’ve got to target the areas you think are most important in your own life. I know a lot of people who have gone through cancer.”
Avril has also taken part in the Sponsor a Room program at her nearest Cancer Council Queensland Accommodation Lodge – the Olive McMahon Lodge in Toowoomba. The Lodges gives rural and regional Queenslanders, along with their families and carers, a place to stay if they need to travel for cancer treatment. Avril chose to sponsor a room at Olive McMahon for a year, and her gift has helped enhance the amenities and services available for guests who come to stay.
“I think that’s a marvellous thing. When the brochure came out, I read about it, and I thought, well, I can’t help physically but I can write a cheque. So that’s what I did.”
“If I need treatment in Toowoomba, I’m only three hours away, but I know there are people who are eight hours away. So, the Lodges are very much a necessity and appreciated.”
What’s more, she has also generously included a donation to Cancer Council Queensland in her Will.
Avril is typically modest about her gift.
She says, “I hope to heck it does a lot of good!”
Learn more about our Sponsor a Room Program.
In the world of online gaming, Project Zomboid is iconic. For more than a decade, a small videogame development company – The Indie Stone – poured their hearts and souls into the realistic zombie outbreak simulation, challenging players to ponder what they’d do in the face of a terrifying undead apocalypse. But behind the scenes of this popular game, another story was taking place – one of resilience, creativity, and compassion in the face of personal tragedy.
Project Zomboid Creative Director Will Porter, was one of the people who first started gathering a band of renegade developers called, ‘The Indie Stone’, back in 2011. For 10 years, this small but dedicated team worked tirelessly on their passion project – Project Zomboid. To them, it’s not just a game; it’s a labour of love, a testament to the indomitable spirit of indie gaming. The turning point for their small-time operation came a couple of years ago when they released a new version, which sent ripples through the gaming world. The game’s community grew exponentially, with players joining from all corners of the globe. But the surge in popularity of Project Zomboid coincided with a challenging period in the life one of the team members – Zac Congo – whose partner Vicki was diagnosed with an aggressive form of cervical cancer. Throughout her long illness, Vicki and Zac’s love and moral support for each other shaped what the video game has now become.
Sadly, Vicki passed away from her cancer. To honour her memory and help raise awareness of cervical cancer, The Indie Stone team were determined to come up with a creative fundraising plan that was relevant to their gaming community. During her treatment, Zac and Vicki lived more than 90 minutes away from the hospital, so they spent a lot of their time staying at Cancer Council Queensland’s Charles Wanstall lodge. “The lodge gave us a fully equipped apartment, with a bathroom and kitchen. It was our home away from home during Vicki’s treatment,” Zac said. “The staff were friendly and kind, and there were counsellors we could speak to any time.” “There’s no way to sugarcoat it. Vicki’s cancer was brutal. It did terrible things to her, and I frantically tried my best to look after her – it was just all so scary. Having such a place like the Cancer Council Queensland lodge to stay at with such lovely people – who understood – really helped us with the cancer experience.” Previously, the team had run a successful fundraising campaign with a company called Makeship. It allowed players to preorder a cuddly toy based on the game’s mascot – Spiffo the Raccoon – and the response was very positive. But this time, they had a new idea – what if they attached the campaign to a charitable cause? So, with the blessing of Zac and Vicki’s family, they decided to donate the profits from a second run of Spiffo plushies to Cancer Council Queensland.
Steadfast Spiffo, the mascot of Project Zomboid, is more than just a cute raccoon. He originally came from The Indie Stone’s previous unreleased game Paws. Spiffo is a cute, lovable character who adds a unique touch to the game’s dark and moody atmosphere. He soon became an integral part of the game’s identity, so, in collaboration with Makeship, a Spiffo plushie was designed, capturing the essence of the character. In honour of Vicki and her battle with cancer, Spiffo became available to purchase for a month. Spiffo was hugely successful, and The Indie Stone’s team raised more than $100,000 for Cancer Council Queensland!
The Spiffo fundraising campaign initiated by The Indie Stone, with the support of Makeship and the gaming community, is an incredible example of organisational fundraising. Not only does it exemplify the strength of unity, kindness, and generosity within the team, but it also shows the incredible power of tapping into their business’ community to make a profound difference. People like Zac and The Indie Stone’s team show the amazing scope of what is possible when great minds come together for a cause they truly care about.
Your donations can help fund projects like this, to benefit all Queenslanders
In June 2024, we launched a groundbreaking online, research tool in partnership with QUT. The updated Australian Cancer Atlas 2.0 shows in detail how each area across the country is faring when it comes to cancer incidence, diagnosis, screening and survival rates.
The project was led by Professor Peter Baade from Cancer Council Queensland. Among the surprising data revealed by the Australian Cancer Atlas 2.0, was that Queensland has the highest diagnosis rates of melanoma in the world, with the south-east corner of Queensland as well as coastal areas, having particularly high diagnosis rates.
Another consistent pattern confirmed by the Australian Cancer Atlas 2.0, is that Australians living in regional and remote areas are experiencing poorer survival rates than those living in urban and metro areas.
Professor Baade says “There is substantial evidence that, when it comes to cancer, where you live really matters. Our research demonstrates that the disparities faced by Australians living in regional and remote areas have not improved over time.”
QUT Centre for Data Science Director, Distinguished Professor Kerrie Mengersen, says this tool is critical in helping define rural and regional healthcare planning.
“Now we have the data, the next step is understanding the ‘why.’ Once we do that, we can make informed changes to reduce these differences in cancer rates. By using the Cancer Atlas along with the new Australian Cancer Plan, we can give policymakers, advocates, and communities the tools to make better health outcomes for all Australians.”
Explore the Australian Cancer Atlas today
For more than two decades now, Chris has been answering calls from Queenslanders across the state in need of cancer information and support. When calls have come through to Cancer Council Queensland’s 13 11 20 phone line, it’s been Chris’s gentle, calm way of being that has put people at ease.
With his wealth of experience, Chris understands what people are going through, and the importance of actively listening. “It’s about holding space with people and truly hearing their concerns, without jumping in and offering solutions immediately,” he says.
Chris says to work at 13 11 20, staff must have tertiary healthcare qualifications. Most have come from oncology nursing to ensure Queenslanders are getting the correct support. While some issues affect all Queenslanders regardless of their location, others are more pronounced in rural and regional areas. Issues such as access to accommodation and treatment away from home, and limited local counselling services, are particularly salient for rural and regional callers. To address these geographical challenges, Cancer Council Queensland offers services like counselling and peer support, and wig and turban fitting services over the phone or online.
Chris says “We adapt our services to overcome any location. People can always reach out to us in the way that suits them best, whether by filling out a form on our website or calling us directly on 13 11 20.”
Learn more about our 13 11 20 information and support line.
When Toowoomba grain farmer, Peter Haeusler, was diagnosed with a Merkel cell carcinoma on his eyelid, he caught a Greyhound bus to Brisbane to have the tumor removed. But, within weeks it grew back to almost 8mm in diameter, and Peter found himself back in Brisbane undergoing radiation treatment for several weeks.Throughout this challenging period, Peter found respite at our Charles Wanstall lodge. After several weeks, the lump on his eyelid disappeared and Peter was able to return home to Toowoomba. Deeply appreciative of the care provided by Cancer Council Queensland, he resolved to give back to regional Queenslanders going through cancer. Last October, Peter generously donated $15,000 to purchase 12 recliner chairs for Toowoomba’s Olive McMahon to enhance the comfort of others going through treatment. “You feel deflated after treatment, I was fit enough, and I still wanted to have a real rest after radiation. It was important to me that the chairs I bought for the lodge would be suitable for everyone, not just the fit and able people. You need a really relaxing chair you can sink back in.”
With more than 850 kilometres between his rural property in Thargomindah and his medical team in Toowoomba, Peter can stay in town and receive radiation therapy, thanks to accommodation provided by Cancer Council Queensland.
Retired farmer Peter lives so remotely that services like ‘The School of the Air’ and ‘The Royal Flying Doctor Service’ are just part and parcel of everyday life. While there’s no resident doctor in his town of Thargomindah, Peter received his diagnosis for prostate cancer last year, through a blood test at his local health clinic. At first, the idea of needing to travel to a metro area to start treatment felt daunting. “I can’t handle the big cities because I grew up in the bush. For many years, it was just myself, my wife, and my kids for the next 40 kilometres.” The cost of staying in town was also an issue. “When they told me I needed to go to Toowoomba for eight weeks, I thought ‘this is going to cost me a fortune,’” Peter says. “You get a rebate from the government if you stay somewhere like a motel, but the gap is still around $80 to $90 a day… and there’s a lot of days in eight weeks.” It was Peter’s daughter who first told him about Cancer Council Queensland’s Olive McMahon Lodge in Toowoomba, a ‘home away from home’ for Queenslanders impacted by cancer and living in rural and regional areas. Peter’s stayed three times at the Lodge, while he undergoes treatment. Each stay involves a three-hour flight from Thargomindah Airport to Toowoomba, and a cab ride to the Lodge. Peter says he appreciates the comfortable rooms, the facilities, and the supportive staff at the Olive McMahon Lodge. He also enjoys the opportunity to connect with other Queenslanders going through treatment in the Lodge’s communal areas. While staying in Toowoomba, Peter has also been able to use Cancer Council Queensland’s Transport to Treatment service to get to and from his medical appointments. Peter says, “I’m able to go on the courtesy bus every morning.” Peter feels the situation for rural and regional patients is improving. When he was young, he watched as his mother passed away only ten days after being diagnosed with a late-stage cancer. Now, aged 70, and facing his own cancer diagnosis, he says things have come a long way. “The treatment, in particular, is getting so much better. I’ve got a bunch of grandkids and great grandkids. Their chances of survival when it comes to cancer are going to be great.” People can always reach out to us in the way that suits them best, whether by filling out a form on our website or calling us directly on 13 11 20.”
Learn more about our Accommodation Lodges
You may have heard the term “UV” before. But what does it actually mean?
UV stands for ultraviolet radiation. It comes directly from the sun, and it’s responsible for up to 99% of all skin cancers in Australia.
If we get too much of the sun’s ultraviolet radiation, it can cause damage to our cells, which can lead to skin cancer.
It’s true that we need vitamin D for good health, and while vitamin D can be found in food, the best source is from the sun. However, for most people, we can get enough vitamin D from just spending a few minutes outdoors. People who are at risk of vitamin D deficiency should talk to their doctor, as they may suggest a vitamin D supplement.
UV radiation can be an invisible danger because we can’t actually see it or feel it. So even on cloudy and cool days, we need to be thinking about UV, not heat.
If the UV is at 3 or above, it means the UV is too strong to be outside without protecting our skin. Even if you don’t typically burn, you can still be experiencing sun damage.
Every day in Queensland, the UV index will reach 3 or above at some point in the day, so sun protection needs to be a priority all year round for anyone living in our sunshine state. We’re the skin cancer capital of the world, so it’s so important we’re all thinking about our skin before we head outdoors.
About two in three Australians will be diagnosed with some form of skin cancer before the age of 70, so it’s critically important we’re protecting our skin.
The good news is skin cancer is one of the most preventable cancers, learn more about protecting your skin.
When single mum of two, Nat Hunter, went to the emergency room with stomach pains in February 2023, the last thing she expected was to be told she had bowel cancer. Like most young people, Nat had no idea bowel cancer claims more lives between 25-44 year-olds than any other cancer. Tests quickly discovered she was one of the 3000 Queenslanders affected every year. A tumor in Nat’s bowel had spread to her liver, meaning she had stage 4 cancer. Nat was rushed in for colostomy surgery where surgeons removed the tumor from her colon, which had been growing undetected for six-to-twelve months. Unfortunately, the tumors in her liver were too large to remove straight away and they needed to be shrunk with chemotherapy first. “You always think cancer will happen to someone else,” Nat explained, “but it doesn’t discriminate. Particularly with bowel cancer, you just assume that’s an older person’s disease. But anyone can get it.” Since February 2023, Nat has undergone six rounds of chemotherapy at the Sunshine Coast University Hospital and has had six surgeries. Like many, her cancer journey has been marked by complications, obstructions caused by scar tissue. infections, and long stays in hospital.Looking back, Nat says there were symptoms – primarily thinned dark stools – but bowel cancer was the last thing on her mind., “In retrospect there were clues but it’s the last thing on your mind. You’re not thinking I have bowel cancer. A lot of people have tumors in their bowel, and they don’t know, so it spreads everywhere. I’m so grateful I had the obstruction. It was still stage 4 and I’m not out of the woods, but they got it in time before it had spread to my lungs when it wouldn’t be very treatable.” To document her journey, Nat started writing a journal. But she quickly realised she wanted to reach and educate more people about bowel cancer, so she started a TikTok where her video diary has reached over half a million people. “I want to make it my mission, it’s great how many messages I started getting after I just had my operation. It’s really cathartic to be able to help other people.” That help is now taking Nat to Parliament. “I’ve been asked by Bowel Cancer Australia to be a representative in Parliament this June, because bowel cancer has the highest death rate for those between the ages of 25 and 44. It goes unnoticed, people just think they have a funny tummy.” When detected early, bowel cancer is curable in 90% of cases. The Never 2 Young campaign Nat represents aims to lower the screening age, as well as increase awareness, improve pathways and further research. If you, or someone you know, has been impacted by bowel cancer, Cancer Council Queensland offer practical and emotional support services such as transport, accommodation, counselling and wigs and turbans. If you need help, please call our information and support line on 13 11 20, Monday to Friday between 9am and 5pm.
In June 2021, Alice Morley was just 3 years when she was diagnosed with ‘Orbital Rhabdomyosarcoma’, a soft tissue cancer that affected her eye socket and optical nerve. Although Alice was born with ‘ptosis’ – drooping eyelid – her parents noticed it was worsening. Doctors in Gladstone didn’t pick anything up during testing, so the family travelled to Brisbane to see her specialist, who immediately sent Alice to the hospital. She was then diagnosed with cancer. Five days later, Alice started her first round of chemotherapy. 6 months of chemotherapy and 28 rounds of radiation later, Alice went into remission in December 2021, only for her to relapse five months later. This time, the cancer threatened Alice’s life, and so the decision was taken to remove Alice’s eye and eye socket followed by another year of chemotherapy. “She’d only spent five months in remission. It wasn’t worth risking another relapse. We tried our best to prepare her for the surgery, but it was really hard to know what it was going to look like. It wasn’t until after surgery that we understood what actually happened.” – Sian Morley, Alice’s mum Now Alice is out of treatment, the family are trying to return to normal but it’s hard when you feel like the security blanket of treatment has been removed. “We just have to have faith the cancer won’t come back now. That’s scary for a family like ours who have already had her relapse once. She’s made it longer than she did last time, but we know statistically it very well could and the likelihood is high. We just try to make the most out of every day.” When it comes to research and information about childhood cancer, Sian says, “childhood cancer doesn’t get a lot of funding. The statistics show childhood cancer isn’t as rare as people think. As soon as you say cancer, let alone childhood cancer, people seize up, they don’t want to talk about it. But people need to know the signs and that it’s not rare, our kids are not just numbers.” When it comes to supporting families navigating childhood cancer, Alice’s family asks for people to donate blood, “That’s the easiest way to do something to help because our kids have to have multiple blood/plasma platelets transfusions throughout treatment.” For the Morley family, it’s now a waiting game. Or as their ophthalmologist put it at their first MRI – “the conveyor belt” – terminology Alice’s mum actually found helpful as it means there is light at the end of the tunnel. Each year in Australia, 40 children under the age of 15 are diagnosed with a soft tissue sarcoma, with only two or three, on average, affecting the eye. The signs for different childhood cancers vary from child to child; it could be a subtle lump or swelling that doesn’t go away, or maybe persistent headaches or trouble urinating. If you, or someone you know, has been impacted by cancer, Cancer Council Queensland offer practical and emotional support services such as transport, accommodation, counselling and wigs and turbans. If you need help, please call our information and support line on 13 11 20.
