Each year, 326 Queenslanders are diagnosed with myeloid leukaemia. More than half of those who are diagnosed will pass away within five years of diagnosis.

Dr Jasmin Straube is leading a groundbreaking research initiative aimed at changing the outcome for everyone diagnosed with myeloid blood cancers.

Her work, “Identifying vulnerabilities in leukemic stem cells with poor prognostic mutations to improve myeloid blood cancer patient outcomes,” seeks to unravel the complexities of gene mutations that determine a patient’s risk of disease progression and resistance to treatment. In recognition of the lifesaving potential of Dr Straube’s research, she has been granted a Cancer Council Queensland Next Generation Cancer Research Fellowship.

Understanding the Research
Myeloid blood cancers – caused by mutations in specific genes – are shockingly aggressive cancers that are heartbreaking for both patients and their families. Dr Straube’s research uses cutting-edge technology to decipher how these gene mutations contribute to cancer development and influence the effectiveness of treatment and overall survival.

The ultimate goal of her research is to gain a comprehensive understanding of these mutations, which can pave the way for developing better drugs that will lead to more people surviving.

What this research means for Queenslanders
Medical advancements have significantly improved the survival rate for the 1 in 200 Queenslanders who are diagnosed with cancer every year. However, certain blood cancers, like myeloid leukaemia, remain aggressive and resistant to treatment. More than half of the patients diagnosed with these cancers die within a year of their diagnosis.

Dr Straube hopes to identify therapies that will provide patients diagnosed with myeloid blood cancers with a fighting chance at life. This crucial research is made possible by Queenslanders’ generous support of Cancer Council Queensland.

The researcher’s journey
Dr Jasmin Straube from QIMR Berghofer is researching vulnerabilities in leukemic stem cells carrying poor prognostic mutations. Her work will play a critical role in improving outcomes for patients with myeloid blood cancer.

Fund local research
Your generous donations help us fund the brightest minds in cancer research. By working together, we can fund local research to make global breakthroughs. We make this possible by directly funding early career cancer researchers who are on the front-line of clinical innovations in cancer detection and treatment.

Learn more

Cancer Council Queensland is excited to welcome our Viertel Cancer Research Centre’s new Director of Research, Professor Sandi Hayes. With over two decades of experience in cancer survivorship epidemiology and exercise oncology science, Sandi is determined to improve the lives of those diagnosed with cancer. We sat down with Sandi to talk about her passion for translating cancer research into better patient outcomes.

What was your inspiration for working in the cancer research sphere?
While I was completing my exercise science degree, the relationship between exercise and cardiac disease was becoming more and more well understood. I had a family history of cancer and therefore didn’t fear talking about it or looking into it. So, I started looking at what we knew about the role of physical activity in cancer prevention and recovery and quickly realised there were major gaps in the evidence base. I thought, if it makes sense to integrate exercise post-cardiac disease, surely it makes sense to integrate it post-cancer. This thought opened the door to all that has followed.

What drew you to Cancer Council Queensland?
A big driver for bringing my research to Cancer Council Queensland’s existing program of research is that it made sense. My research, mission and values are completely aligned with Cancer Council Queensland’s strategy and the existing Viertel Cancer Research Program. Importantly though, I recognise that research alone rarely creates meaningful impact; instead, it requires all relevant parties that will be influenced by change to work together to ensure that what we learn in research holds true when rolled out in the real world. Cancer Council Queensland brings all those relevant ‘stakeholders’ together.

“My research is completely focused on improving health outcomes for people with cancer. Every bit of research that I’m involved with must have that remit.“

When you look at your career so far, what are you most proud of?

There is much to be proud of. From the small moments, like hearing a participant share how being part of a study helped them during their cancer journey, to the more measurable achievements, such as reaching our recruitment target of 500 women for the ECHO clinical trial. This is a significant accomplishment for clinical trials in general, but achieving this in an exercise trial involving people diagnosed with a less common and understudied cancer makes it even more special.

On a broader scale, I am proud of my contributions to the wider field of research. When I began my research career, the common advice given to someone diagnosed with cancer was to ‘rest and take it easy’. Over the past 20+ years, consistent and convincing evidence has shown the opposite to be true – engaging in regular physical activity during and after cancer treatment is associated with reduced treatment-related morbidity, better physical function, improved quality of life, and potentially improved survival. The challenge now is to determine how best to get people with cancer active and keep them active.

Learn more about Sandi’s latest research in Exercise during Chemotherapy for Ovarian Cancer (ECHO).

Jacqui de la Rue is an endorsed health psychologist who is currently working at Cancer Council Queensland. Over her 28-year career, she has talked to dozens of families whose children have been diagnosed with cancer. This International Childhood Cancer Day, Jacqui walks us through how to approach childhood cancer conversations with sensitivity and respect.

“One of the first things I like to say is, it just feels wrong. It fundamentally feels wrong to learn that your child has cancer.

Parents feel helpless because they have to sit back and watch their child go through horrendous invasive treatments, they lose their hair, they are in hospital and they start to ask themselves, ‘Why did it happen to my child? Why wasn’t it me who got sick?’. I like to say, ‘It’s okay that you feel bad that it’s happening to your child and not you.’

And, if their child does pass away, it’s important for parents to know that they can feel that it is wrong for their child to die before them. It’s outside of what we think life should be about. My child should bury me, not the other way around. And that’s something that I come across with every parent, aunt, uncle, grandparent. It’s sad. It’s very sad. We should acknowledge that sadness is the right response to death.”

“When a child passes away, everybody else says, ‘Oh my gosh I’m really sorry, how are you going? Do you need anything?’. While the people who say this may mean well, it can put parents in the position where they’re retelling their child’s story over and over again, which is traumatic.

I’ve worked with people who tell me they’re actually avoiding some situations, just so they don’t have to retell what has happened to her child.

I often help my clients prepare a letter, where they can write exactly what’s happened and what they need from their tribe right now. Having that letter just helps parents lower how many times they’ll be retraumatised by telling that story. It also puts some control back in that grieving parent’s hands, to say this is what I need, this is what I don’t need. And it is something that can be emailed, or placed in a shared social media space so that it reaches others.”

“Another way to help parents affected by childhood cancer is to keep having those regular check ins with people. When people are overwhelmed with sadness, they will withdraw. And they say things like, ‘I don’t want to be a burden. Everybody knows me as that parent who lost their child,’ or ‘I know this may sound strange; I don’t want to talk about cancer every time I see people.’

It’s okay to have a cup of coffee with a parent and not talk about the cancer. Sometimes, they just want to hear what is happening in your life. It helps to bring in other topics to the conversation.”

“We know there are a lot of long-term effects that childhood cancer and its treatment can have on survivors, but it is important for parents to know they don’t actually need to make all the lifetime decisions now. They can talk to their kids at the appropriate time when that stuff comes up.

It is common for some adult survivors to say, ‘I can’t make plans with my life anymore,’ because they have to be scanned every five years. Even though they are in remission, it’s still a stage of the cancer journey, and it can result in this condition called ‘scan-xiety.’

Sometimes making decisions is overwhelming and I like to remind people that it’s okay to deal with what’s in front of you today.”

“We are all meaning makers, and it doesn’t make sense to us that a child could die or be diagnosed with cancer. When we struggle within ourselves to make sense of it, that’s when people around the grieving parent can offer statements like, ‘Be grateful for…’, or, ‘At least you don’t have to worry about…’, or ‘Now you can put it behind you’.

What is important to know, is that you don’t need to fix anything for the grieving parent. You don’t have to have the ‘right thing’ to say to them. You don’t have to say anything. You can just listen and sit with them in their moment. You can have a cup of tea with them and that can be more helpful to a person grieving. In a therapy setting, I often say, ‘I don’t have words for you, but I’m here for you and this is a safe space to really talk about what’s happening.’ It’s important to understand the impact grief can have on survivors, but it is important for parents to know they don’t actually need to make all the lifetime decisions now. They can talk to their kids at the appropriate time when that stuff comes up.

“It isn’t uncommon for me to hear a person say ‘Everyone was there when my child died, and then they all left. Then it was just me and my sadness.’

I tell people that’s the time to seek out support through counselling, although you can seek help at any point of the cancer journey. When everyone is there, you don’t have to do the grief work because you’re being fully supported. But then everyone will go and it’s just you and the sadness, it’s just you and the grief. That’s when the real grief work begins.

Counselling is really valuable in that it’s not a relative or your partner. At Cancer Council Queensland, we offer counselling at no cost to anyone over 18 who has been touched by cancer. Help is available, encourage your loved ones to call our 13 11 20 information and support line to get connected with support.”

In the heart of Gladstone, a familiar face can be spotted strumming away on his guitar, creating an uplifting melody resonating through the streets. Meet Reg Sutton, a dedicated busker who has been using his musical talents to raise funds for Cancer Council Queensland since July 2018.

Reg’s journey into charity busking began at Blend, a local coffee shop, where he started performing one day a week. Little did he know that his humble hobby would turn into a meaningful mission to support Cancer Council Queensland.

His motivation stemmed from personal experiences as he lost his father to liver cancer at the tender age of 16 and later lost his brother to lung cancer in 2018.

Reg’s commitment to the cause became even more profound when he witnessed Glenda, a close friend, lose her battle with lung cancer. Following Glenda’s passing, Rose took over the reins at Cancer Council Queensland, and Reg decided to use his passion for music to support the organisation.

Every fortnight, Reg graces the patrons of Coffee Ink, a local coffee hotspot owned by Sam, with his acoustic performances. Retired since 2016, Reg dedicates his time and musical talents to make a difference in the lives of those affected by cancer. His performance spans a wide repertoire, ranging from hits of the ’60s to the ’90s, with a focus on Country Pop and Country Rock.

“I’ve played the guitar for 30 years, and this is something I can do just to put a smile on their faces,” he says. His passion for music becomes a channel for hope and healing while also raising awareness and funds for Cancer Council Queensland.

Not only does Reg entertain the crowd with his musical prowess, but he also places a collection box for Cancer Council Queensland, encouraging passersby to contribute to the noble cause. His dedication is not just about playing tunes, it’s about making a meaningful impact on the lives of those grappling with cancer.

In the spirit of this holiday season, Reg surprises his audiences with a rendition of Christmas songs, adding a festive touch to his performances. With a heartwarming smile and a twinkle in his eye, Reg continues to spread joy while honouring the memories of his loved ones and supporting Cancer Council Queensland.

As Reg Sutton strums away on his guitar, the streets of Gladstone echo with a melody of compassion and goodwill, proving that one person armed with a guitar and a cause, can make a small but significant difference in the lives of Queenslanders impacted by cancer.

The cancer journey is long, exhaustive, and often characterised by lack of connection between available services and the needs of people impacted by cancer. Many patients experience poor quality of life, psychological distress, and physical symptoms throughout their treatment and for many years afterwards. 

Over the next five years, researchers at the Viertel Cancer Research Centre are undertaking the Understanding the Experiences and Identifying the Needs of Queenslanders Affected by Cancer study. This study aims to understand the lived experiences of people who receive a cancer diagnosis in order to more closely align Cancer Council Queensland’s support services with their needs.

Aims
Working in collaboration with our Client Operations team, and building on our extensive experience in conducting large research studies, we will: 

– Undertake population-based research to identify the experiences of and support needed by cancer patients and their families including those disadvantaged by distance or circumstances. 

– Identify gaps in service provision, co-design and test evidence-based services for cancer patients and their families.

Outcomes
This new research can change how patients and their families are supported from diagnosis through to survivorship, which will contribute to improved health and well-being for the growing population of cancer survivors and their caregivers.

“We initiated this research project to give people affected by cancer across Queensland a real voice, the opportunity to tell us what support services they need.” – Belinda Goodwin, Senior Manager Health Systems & Behavioural Research.

Learn more about this project

Thank you for giving Queenslanders with cancer a home away from home in 2023.

Our lodges don’t just offer physical accommodation. They help cancer patients and carers navigate the health system, connect with the practical and emotional services they need, and share their experiences with people who truly understand.

“The relief and amazement our clients share when they first tour through their unit, you can see it in their faces. It’s so rewarding to witness their fear and anxiety dissipate as they settle in.” – Robyn, cancer support advisor, Gluyas Rotary Lodge.

Last year, our five lodges across the state provided over 25,800 nights of accommodation to Queenslanders who had to travel to get their cancer treatment:

Cairns: Marylyn Mayo Lodge
3,734 nights provided.

Townsville: Gluyas Rotary Lodge
5,712 nights provided.

Rockhampton: Central Queensland Cancer Support Centre
1,703 nights provided.

Brisbane: Charles Wanstall Lodge
10,159 nights provided.

Toowoomba: Olive McMahon Lodge
4,499 nights provided.

Want to know what it’s like to stay at our lodge? Read Alan’s story.

Want to find out a little bit about the people who work at our lodges? Read Robin’s story.

Need to travel for your treatment? Call 13 11 20 to discuss your options.

During the Christmas period, our hearts are filled with a desire to give back and support others, especially families facing the challenges of childhood cancer. We can all agree that nobody should have to face cancer alone, and there’s no doubt we can all empathise with and want to support families experiencing childhood cancer this Christmas. However, sometimes our fear of overstepping, offending or adding to their emotional load can stop us from showing our support. We’ve spoken to three anonymous oncology parents to find out what’s on their Christmas wish list so you can get some ideas of how you can support them and their families this Christmas.

“The gestures that are given without you having to ask or tell them what to do are the best.”

“In the hospital I didn’t know how to feed myself. There was only one café, and it wasn’t open very late. I couldn’t leave my son alone and most of the rooms didn’t have facilities to cook either. So, when someone gifted me an UberEats voucher, it was incredibly helpful. I could meet the driver downstairs while the nurse watched him for a few minutes. Even when we weren’t in hospital for treatment, we would focus on the kids all day, then we would get them to bed finally then we’d collapse in a heap. It was nice to have that option – I wouldn’t normally do it if I didn’t have the voucher. It made us do something for ourselves.” 

Cost: From $25

“Research the different kinds of cancer, so you know what their kids have and what the side effects of their treatment are. It meant a lot to me when my friends had an idea of what my child is going through without me having to explain every little thing.”

Cost: FREE

“Research into new therapies like the one my child received is the only reason he’s alive and has both of his arms. Kids are dying from the toxicity of the therapy. The only way we can save their lives is through childhood cancer research.” 

Cost: From $2

“Breast cancer survival has increased so much part of that is due to awareness and the funding that is able to be directed to research because of that awareness. Share our posts on social media with the worldwide hashtag #GoGoldForChildhoodCancer. We appreciate the acknowledgement.”

Cost: FREE

“That’s the easiest way to help, because our kids have multiple blood, plasma, and platelet transfusions throughout treatment. Your donations literally save lives. It’s meaningful, it’s free, and once you’re in the system it doesn’t take much time.”

Cost: FREE

“We know money is not something everyone has at the moment, but volunteering with a cancer charity is a big one too. A lot of charities have Christmas events you can help out with. So, finding those volunteering opportunities is always helpful.”

Cost: FREE

“A lot of cancer charities don’t do much fundraising throughout the year but do Christmas wrapping services in exchange for a donation at shopping centers. By either donating your time to wrap presents at the booth or asking them to wrap your gifts for a donation, you can support the services they provide, which supports us.”

Cost: From $2

“I really appreciated the ones that would say, ‘I am going to drop by a care package,’ and they don’t come in, they just leave it on your doorstep. You don’t always want visitors to have to present yourself or put on a brave face. It isn’t about what is in the package, it could be food or toys for the kids. You just feel really good that you’ve got this amazing community, and you don’t have to ask them for anything. That’s golden.”

Cost: From $15

“If you know a family that’s going through active treatment and they are in the hospital over Christmas, the child who is in hospital tends to get a lot of stuff. But the kids at home have had their lives completely pulled apart as well, so it’s nice to make them feel special too. It is incredibly helpful to take my kids out and give them a fun night.”

Cost: FREE (+ petrol)

Learn about the research we are doing in childhood cancer

Finding good schools for her kids, enjoying the beachside lifestyle, and looking for new career opportunities – these were the things at the front of Wendy’s mind when she moved her family of five from Adelaide to Mooloolaba 15 years ago. Just six months later, Wendy was diagnosed with breast cancer.

August 2008 was the first time I got diagnosed with stage three triple negative invasive ductal carcinoma. It was one of those moments when times appears to stand still. Your brain tries to comprehend what is going on. At first, it goes blank, and you feel numb. And then you think, “Oh my god, this is really happening to me.”

At that moment, our hopes and plans for a new lifestyle were taken away. I had only read about those stories, and now I was about to enter one. How would we manage up here, in this new town? What would we do without family nearby to support us? How would my kids and husband cope?

I didn’t know who to talk to, where to go, or what to do first. I just told myself, “We can do this.”

Once you’ve been diagnosed with breast cancer, you have to get treatment quickly. I had to pause and remind myself how lucky we were to be in Mooloolaba, because everything I would need for treatment was at our doorstep and we didn’t have to travel far. First, I had a lumpectomy. Then, I was back in again to have 23 lymph nodes taken out of my left arm. After that, I had another big lump taken out. And then I started six months of chemo, followed by six weeks of radiation. It was during this time that I rang Cancer Council Queensland. They were good listeners. They understood what I was going through and gave me tools to help me cope. They introduced me to the My Journey diary, and I did the Look Good Feel Good day program where they taught me how to put a wig on and apply makeup for my eyebrows. It was comforting to know they were always only a phone call away, ready to give advice and answer my questions.

Once my initial treatment was over, I made a goal to just get to the five-year mark cancer-free. When, at my five-year mammogram and ultrasound, they found another lump, we were gutted.

It was then and there that I made the life-changing decision to have a double mastectomy, followed by more chemotherapy.

As strange as it may sound, it was the best decision I ever made. I never even wanted a reconstruction. I am 48 years old; I have three children and an amazing husband who is my rock, we have been married for 32 years! I don’t need to have boobs to fulfill my life!

Cancer has changed me for the better in so many ways. Too many take life for granted. You never know what’s going to happen tomorrow. That’s why I am paying it forward and helping others in the same situation. Five years ago, I signed up to become a Cancer Council Queensland volunteer, offering peer support over the phone to ladies who are going through a mastectomy. It is always so powerful to just listen to others who are going through the same journey I went on, to give them hope and strength. I want to share my story and do motivational speaking to not just cancer survivors, but all people who don’t know there is life after cance

It has taught me to remain positive. It has taught me the true value of family and friendship. But most importantly, it has taught me that life is so precious, to live your life now, as you never know how long we have.

This is my third chance at life, and I am not holding back. I’m living life and it feels good!

By donating monthly, you can make a difference to the lives of people like Wendy on an ongoing basis. By giving on a regular basis to Cancer Council Queensland, you’ll be joining a community of local heroes supercharging progress towards a healthier, happier future. It’s a powerful way to support local cancer research, patient support services, and cancer prevention programs.

Become a Regular Giver

When Jenaya walked into the obstetrician’s office to chat about her birth plan, she didn’t know she’d taken the first step towards the darkest days of her life. But, throughout her journey, she would find the type of faith, endurance, and tenacity that only the most unimaginable hardships can lead to.inding good schools for her kids, enjoying the beachside lifestyle, and looking for new career opportunities – these were the things at the front of Wendy’s mind when she moved her family of five from Adelaide to Mooloolaba 15 years ago. Just six months later, Wendy was diagnosed with breast cancer.

That visit to the Maternal Fetal Medicine clinic was the first time the word “sarcoma” was mentioned to Jenaya and her husband, Joshua. A scan she’d had a few days earlier showed an anomaly on her son Toby’s arm. Her doctor said although he hadn’t seen anything like Toby’s arm, throughout his 20-year career, the anomaly was likely a vascular birthmark. While he assured Jenaya a cancer diagnosis was rare, the doctor cautioned “we do have to say it”.

Two months later, her son Toby was born with significant abnormalities covering his left arm and shoulder. Despite having a category one referral, Toby was discharged as an outpatient with a telehealth checkup scheduled two months later.

“At this stage I was this anxious first-time mum. I thought I was worrying too much – that I needed to trust the system,” Jenaya says.

Two months was too long for the new mum to wait.

Her mother had found an American organization called the Vascular Birthmark Foundation (VBF). They emailed photos of Toby’s arm and shoulder, along with a summary of the scans that had been done and his initial diagnosis.

“We got an email back saying, ‘This is not a birthmark, this baby needs urgent testing,” Jenaya says.

After two unsuccessful visits to GPs, an emergency department visit where her son’s condition was labelled “not a medical emergency”, and unsuccessful phone calls to the hospital where she had given birth, Jenaya finally got in touch with a doctor interstate who understood the severity of Toby’s condition.

The VBF gave her the name of an interventional radiologist in The Children’s Hospital at Westmead who, despite not having a referral, agreed to look at the photographs. Within days of hitting send, Jenaya got a call from a private number.

“He said, ‘This baby needs to be tested immediately. Come straight to the emergency department for admission and we will do a biopsy and a develop a treatment plan.’”

Even though she was still recovering from her C-section, Jenaya used her Flybuys points to immediately buy a plane ticket to Sydney.

“I was so nervous. I was second guessing myself, which is really sad. I have learnt to become a lot more assertive. Nobody else is going to advocate for him, he can’t do it for himself yet. His life is in our hands.”

At the hospital, Jenaya prepared Toby for the biopsy she hoped would finally give her answers.

“Let me tell you, fasting a three-week-old who is exclusively breast fed for seven hours was really difficult. He didn’t understand why he couldn’t feed and he could smell the milk on me as I held him. He cried continuously, then fell asleep from exhaustion.”

“It was really hard. My new baby is crying not knowing what is going on. I don’t know what is going on. We are over 1,000km from home in the middle of a pandemic, trying to get answers.”

That afternoon, the medical team found Jenaya, and her husband Joshua who had driven to Sydney to be with her and Toby, in the ward. “They said ‘Hey let’s go have a chat, leave Toby with the nurses’ and he took us to another room. “I thought ‘Wow this is a really beautiful room, this is the type of room where you’d go to give bad news. I didn’t realise we were those people who would have the bad news broken to them. I still thought it was going to be a form of a vascular anomaly.” Jenaya says. “We sat down, and the doctor started by saying Toby had gotten through the procedure well. Then he said, ‘I’m sorry, it is malignant spindle cell neoplasm. We think it is something called infantile fibrosarcoma. The oncology department will be in to speak to you.’” “I went very still and just sort of stared at the doctor. I didn’t fall to the ground, scream or break down. I just went very still; my eyes just welled a bit and a single tear or two fell down my face.” Toby was only three weeks old.

After Toby’s diagnosis, the plan was to get scans to see if the cancer had spread to other parts of his small body, then the family would head back to Queensland for treatment. But just hours after they were discharged, Toby’s arm started oozing. They returned to the hospital where the oncologist told Jenaya the infection was a sign the cancer was progressing, and they needed to start treatment right away. The next day he had his first PET scan, then went into surgery to get his central line inserted – a semi-permanent IV inserted into his chest that could be used to give medications (like chemotherapy), antibiotics, nutrition, fluids, and to take blood tests quickly and easily. “He didn’t have a bath for his first year of life because he couldn’t get the central line, or the dressing, wet, so we sponge bathed him on the kitchen bench,” Jenaya says, remembering that time in her life. Not only was Toby’s cancer incredibly rare, but he also had a very unusual genetic change that caused the tumours to grow, which was different to most other cases of infantile fibrosarcoma. This meant he couldn’t access a targeted therapy had been developed. Because he had a different genetic mutation, he had to go through chemotherapy. A week later, Toby flew back to Brisbane to continue treatment. But it didn’t work. “The cancer was growing; we could see it getting bigger every week. It was the size of an adult fist on the back of a three-month old’s shoulder. That was quite scary to see. The skin around the tumour was so tight you could see the veins. He couldn’t lie on his back without being tilted to one side.”

At 3 months old, the scans confirmed what Jenaya already knew: The tumour had grown, exponentially. The medical team told Jenaya and Josh they had two options, but no right answer. Option one was to start Toby on stronger chemo, with no guarantee it would work or that his cancer wouldn’t spread through his body. Option two was to amputate Toby’s entire arm and shoulder. “It was really hard; it was a lot of weight and responsibility. The oncologists said if they had to give an answer, they would lean towards more chemotherapy, but because the situation was unprecedented, the medical teams would support whatever choice we, as his parents, made.” At first, Jenaya and Josh chose the amputation. Toby was booked in, they went through the consultations, speaking with the surgeons for hours on end about the procedure while their oncologist spent late nights researching possible outcomes. Then they discovered the risk of the cancer coming back at the site of the amputation was greater than the risk of it spreading during chemo. Plus, if it came back, there wouldn’t be much more they could surgically remove from Toby’s body. “We had to make the decision to keep the cancer in our baby so we could know whether the treatment was working. That was my first Mother’s Day.”

Jenaya and Josh cancelled the surgery, and Toby immediately began more intensive chemo.

The tumour stopped growing, but it wasn’t having the effect they hoped. When Toby reached six months of age, he was treated with even more aggressive chemotherapy, which was intended for adult use.

The short-term side effects baby Toby went through intensified. Hair loss, vomiting, febrile neutropenia, blood transfusions, platelet transfusions, skin infections, viruses. The long-term side effects, such as organ damage or heart failure, can take several years to manifest.

Hospital admissions were par for the course.

“We were often admitted for several days at a time, because the treatment was so intense his body started to shut down and he experienced bone marrow failure, which meant he needed to receive multiple life-saving blood and platelet transfusions.”

“Chemo takes you to the brink of death and I remember an oncologist telling us, ‘We give the child chemo, and we hope the cancer dies before the child does.’ Because it is so toxic.”

In total, Toby had chemo almost every week for 11 months.

“We got to the point where he’s had the maximum of chemo possible, any more chemo and the risks would outweigh the benefits – but the cancer was still very much there.”

While the surgeons said the cancer may have shrunk enough to be removed, Jenaya was apprehensive. She faced yet another impossible choice: Amputate and Toby would grow up and learn to live with a limb difference or proceed with a limb-salvage surgery and commit to a childhood marked by multiple surgeries, limited mobility, and scar tissue.

In the end, the choice was made for her. The salvage surgery was cancelled because tests indicated that the surgeons wouldn’t be able to get clear margins around the cancer in Toby’s arm.

“I’d been pretty numb the whole way through. I think that survival mode – it’s unfathomable really, you never expect to face those choices as a new parent. But you do what you have to, because it is your child’s life.”

With amputation seemingly the last option left, Toby’s oncologist approached Jenaya and Joshua with a new, untested possibility. Toby was nearly 12 months old, and his medical team had agreed to try an off-label use of another cancer drug as a last resort. “She explained the drug theoretically inhibits the genetic fusion that is driving his cancer.” It had not been used for this purpose, and it had not been used for babies, but Jenaya and Joshua agreed, it was worth a shot. The pharmaceutical company approved the request to use the drug on compassionate grounds and sent it to the hospital. For the next 9 months, Toby was given liquid medication daily through a nasogastric tube, which was inserted into his nose and down to his stomach. It was not easy – his tube came out close to 40 times, either from vomiting, or he or someone else pulling it out. Every time that happened, he had to go back to hospital and Jenaya watched him scream and cry as he was held down to reinsert the tube. But the medicine worked. “The treatment has had, what many medical professionals are describing as, a miraculous effect. It has shrunk the tumour to a mere few centimetres.” “The targeted therapy gave us our life back. On chemo we were in hospital every week, Toby had next to no immune system, he couldn’t go back into the community, it was dangerous if caught a simple cold. This new form of precision medicine meant we could live at home most of the time, his hair grew back, and he could even begin going to daycare.” Toby’s central lines have been removed, and at 1 year old, he finally had his first real bath – he loves the water! His next step is scans, and surgery to remove the remaining tumour from his shoulder. “He’ll be keeping his arm, keeping his shoulder. They have to take some muscle, but they think he’ll be able to compensate for the loss of that muscle. It is unlikely his left arm will ever look similar to his right, there will always be evidence of the disease and how the arm formed in utero around the tumours.”

Toby’s team can’t say for sure if there is any active cancer still in his arm, so Jenaya and her family will just have to wait and see whether anything will grow back after stopping treatment.

“A lot of people think cancer stops when treatment is over, or their hair has grown back. Our kids get follow up for years. They are at risk of heart failure, medical trauma, secondary cancers… the fear is always there. Every bruise, every small symptom makes you wonder if it is back.”

“I have learned to be present to live in the moment and to embrace joy in every space. I have not been so present in all my life than I am now. Today is really all that we have.”

In the face of immeasurable uncertainty, Jenaya says her faith and the support of her community have made her a stronger, more empathetic person.

“I’m grateful for the people who have just appeared, offered meals, sent messages of encouragement, helped financially.”

“We haven’t really asked ‘why me’ it’s like, well ‘why not’? There’s nothing we did or could have done to cause or prevent this. This is simply one of those things that just happen.

“I hope our story can show that even in the darkest most horrific circumstances where there’s life, there’s joy – even when it looks different to what we first imagined.”

“There are too many children we have met along the way who haven’t had a long life because of cancer and the toxic treatments used to fight it. We need better, safer options for our kids and that can only come through research.

Just because a life is little, doesn’t mean it’s not worth fighting for. Our kids deserve the opportunity to live.”

Learn about the research we are doing in childhood cancer.

David Callister had only recently retired when he received a prostate cancer diagnosis in March 2021 – the day before his 74th birthday.

Back in 2017, a regular blood test showed a PSA (prostate-specific antigen) reading of 7, which was at the upper-acceptable level for his age of 70, and he knew that a high PSA level can be an indicator of prostate enlargement and cancer.

‘At the time, my doctor wasn’t overly concerned because I was in good health and didn’t have any significant prostate symptoms,’ said David.   

Then in early 2020, David began experiencing significant prostate symptoms including frequent urination and incontinence.  A blood test showed his PSA reading had increased from 7 up to 13 – which was regarded as high and often indicates prostate problems. 
 

‘Initially an MRI scan didn’t confirm any cancer, but the urologist said I need to focus on getting my PSA level down to 6, so I needed to take action. I believed I could do this; I was up for the challenge and feeling optimistic.’  

To reduce his symptoms and get his PSA level down, David took supplements and focused on a mostly vegetarian diet which included fish, high grain cereals and fruits and cut back on wine. However, in January 2021, a blood test showed his PSA reading was now up from 13 to 15. ‘I was hoping that my dietary changes and supplements would reduce my symptoms and get my PSA level down but didn’t have any luck. I was a bit shocked and disappointed at this result after the effort I had put into my diet. Obviously, the abnormal prostate cells were on a growth path to tumours anyway.’

In February 2021, a biopsy and MRI scan, the pathology test showed a grey area in the prostate, but still couldn’t confirm any cancer. Then a few weeks later a PET scan then a second biopsy confirmed it was cancer (one year after he started to have significant symptoms). It was classed as intermediate growth cancer. ‘I was shocked to some extent and naturally disappointed to be diagnosed with cancer because I believed that I had always had a healthy lifestyle as a non-smoker with a mainly “Mediterranean diet”, and exercise… I had always associated cancer with physical illness, but I realised that if the cancer is early stage and if you don’t need chemotherapy, it may not affect your physical health significantly.’ ‘Lucky for the modern PET scan which then motivated me to take timely action. I wanted to act on it quickly, knowing that early treatment has a great chance of success, but that the process would still take many months.’ ‘I confided in my family and a few friends, but I didn’t want to talk about it all the time and I didn’t want too much sympathy. I just wanted to get the treatment finished and have everyone forget about it.’

After consultation with the urologist and radiation oncologist, David chose ADT (androgen deprivation therapy) followed by 20 sessions of external beam radiation sessions over four weeks. Prior to treatment, David benefited from using Cancer Council Queensland’s booklets about understanding prostate cancer and radiation therapy. To educate himself about his cancer and the process of radiation therapy. ‘I had the 1st ADT injection in May 2021, a year after my significant physical symptoms started. In July, my PSA reading was down from 15 to 8. In August, I had the 2nd injection and by the commencement of the radiation treatment in October, my PSA reading was down to 2 which indicated that the tumours may have shrunk enhancing the effectiveness of radiation. I was pleasantly surprised that the ADT injections worked quickly, greatly reducing testosterone feeding the cancer.’ ‘Two weeks before the radiation treatments, I also had a small operation to insert gold markers onto the prostate in order to accurately target the cancer cells.’ Throughout October 2021, David had 20 radiation sessions, Monday to Friday, each lasting approximately 20 minutes including preparation. ‘The sessions were well organised and not at all painful. I did have some side effects from the treatment such as tiredness, warm flushes, some weight gain, and loss of strength as a result of greatly reduced testosterone. However, I was still able to carry out my usual activities and I kept on exercising which is highly recommended. I had some general anxiety but not mood swings or feelings of depression.’ By the end of December 2021, three months after radiation finished, David’s symptoms had improved, and his PSA reading was down to a very low level of 0.008! His oncologist was pleased with the result.

Since the radiation treatment, I have a blood test and I see the oncologist every 6 months. In June 2022, December 2022 and June 2023 my PSA levels have only increased very slightly and my testosterone levels are back to normal for my age. My cancer is in remission now and hopefully it won’t come back.’

‘I count myself lucky because having significant symptoms combined with increasing PSA levels, I knew that something was definitely wrong and I acted on it quickly, getting the cancer treated while it was early stage. I believe if I hadn’t had the PSA levels checked over the years and just accepted the physical symptoms as part of getting old, I probably would have had advanced cancer by now and spread outside the prostate.’

David says that his general health is great.

‘I still have some excess weight around the middle and my muscles and strength are still not quite as they were. I am walking a lot and going to the gym, so I feel like I am getting back to where I used to be before my diagnosis.’

‘It’s important for men, especially those over 50, to have regular check-ups because you could have prostate symptoms thinking it is normal part of ageing. If cancer is detected at an early stage, it can usually be successfully treated without disrupting your life too much.’

‘Although cancer is still at the back of my mind, I find it best to think positively and assume it’s not going to come back.’

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