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Oren fast-tracked to CAR T-cell therapy for rare Ph-like ALL

Oren fast-tracked to CAR T-cell therapy for rare Ph-like ALL

Diagnosed with a rare ALL sub-type last year, Oren London had only just begun chemotherapy before being accepted for CAR T-cell therapy in Australia.

Oren stands outside, smiling
Oren was the sixth child in Australia to have CAR T-cell treatment

A sports-loving 12-year-old, Oren had competed in a state swimming championship and weekend rugby matches in July 2019 when his mum, Fiona Snell noticed a series of changes in her son.

“Suddenly, he became really lethargic and lost motivation… he’d fall asleep anywhere,” explained Fiona.

“Then there was the bruising and weight loss, which I originally put down to puberty.

“After a sports injury in a footy game, he started having severe shoulder pain and he’d come out of physio sessions screaming.

“Then his appetite was almost non-existent, he began complaining of tummy aches, and was looking grey.”

After three weeks of these symptoms, with no improvement, Fiona took Oren to their local doctor in hometown Pottsville on the New South Wales north coast.

They were sent straight to hospital after the doctor noticed Oren’s spleen and liver were enlarged.

“We arrived at Emergency and got the red-carpet treatment straight through,” said Fiona.

Finally, after three hours of tests, the medical team told them that Oren had leukaemia.

“That’s when my whole world fell apart.”

Oren in hospital during treatment with mum, Fiona and dad, Jason
Oren in hospital during treatment with mum, Fiona and dad, Jason

Only a few hours earlier, Fiona had thought Oren would be given antibiotics and they’d be on their way.

“It was tough, especially having to break that news over the phone to my hubby, Jason,” said Fiona.

“I told him to get a bag ready and bring it up to the hospital with our daughters, Nylah, 9 and Amara, 10.”

Treatment resistance and organ failure

Oren and Fiona were medically transferred from the Tweed hospital to Brisbane, so Oren could begin chemotherapy immediately, and his diagnosis was confirmed as acute lymphoblastic leukaemia (ALL).

Four days into treatment, Oren’s kidneys started to fail, and he went to intensive care.

“The chemo started to attack all his organs and he developed tumour lysis syndrome*,” said Fiona.

Oren was put on dialysis to improve his kidney function and it took two weeks for his blood levels to improve enough to continue having chemotherapy.

“He ended up with high blood pressure, had seizures, and was sent back to the paediatric intensive care unit.”

CT scans and an MRI showed he had Posterior Reversible Encephalopathy Syndrome**.

Oren’s medical team became increasingly concerned that he had not achieved remission from his first month of treatment and ordered regular bone marrow aspirates and lumbar punctures.

Further studies of his bone marrow revealed that Oren had a mutation and sub-type of ALL, called Philadelphia-like ALL diagnosis (Ph-like ALL).

“We were told this particular mutation is quite strong and rare,” said Fiona, and this explained his resistance to chemo.

Preparations began for Oren to have a bone marrow transplant and he was set up to have full body radiation.

“His sister, Amara, was an exact donor match,” said Fiona.

Then, suddenly, Oren became a successful candidate for CAR T-cell therapy.

Fast-tracked to CART-cell therapy

Younger sisters, Amara, left, and Nylah, in hospital with Oren
Younger sisters, Amara, left, and Nylah, in hospital with Oren

Fiona said that Oren’s case, being so rare, was put before the board of CAR T-cell experts at the Royal Melbourne Hospital for consideration for the therapy, Kymriah® (tisagenlecleucel), which had only recently become available in Australia

“I had learned a little bit about CAR T-cell therapy through my research of Ph-like ALL,” she said.

“I understood it was normally for kids that had gone through two and a half years of treatment, had already tried a bone marrow transplant, and had a second or third relapse.

“They had to know Oren wasn’t going to survive the two and a half years of preliminary treatment for him to be approved for CAR T-cells after only three months of treatment.”

The London family was notified in November 2019 that Oren had been approved for the new form of immunotherapy and they travelled to Melbourne to have his T-cells collected.

“Oren was the first child from Queensland Children’s Hospital and the sixth child in Australia to have CAR T-cell treatment,” said Fiona.

“The Australian government had just given the funding and we were so lucky to have a supportive oncologist who really went to bat for us.

“His T-cells were sent to the U.S., to have the CAR-receptor put on them, which took about four weeks.”

During that time, the Londons returned to Brisbane and Oren had maintenance chemo before going back to Melbourne in January 2020 so Oren could receive his now ‘super-charged’ T-cells.

“We stayed for seven weeks and I don’t want to say it was a walk in the park but compared with what he had been through with the chemo, it was amazing,” said Fiona.

“He had a small reaction of high temperatures but when they did the bone marrow aspirate and a lumbar puncture 30 days later; we had hit remission.

Oren on the cricket field, prior to his leukaemia diagnosis
Oren London on the cricket field, prior to his diagnosis with a rare subtype of ALL

“I got my boy back. I now have my smiling, eating, walking, talking 13-year-old back.”

Home to a pandemic

On February 23, the family returned to Pottsville.

“The girls had just returned to school full-time, and Oren part-time, when the COVID-19 pandemic hit,” said Fiona.

“I took the kids out a week before the schools made that decision to close. We had been through too much for too long to take any chances.

“It was a great time for us to bond again in our own home for the first time in six months. It really brought us back together as a family.

“Now the kids are back at school and Oren has started footy training and taking his position on the field for a full game.”

Looking to the future

For six months after his CAR-T treatment, Oren had monthly check-ups and bone marrow aspirates in Brisbane, and for the rest of his life Oren will need regular intravenous immunoglobulin therapy (IVIg) due to his non-existent immune system.

“We had hoped to switch to subcutaneous immunoglobulin which he could have injected weekly,” said Fiona, but unfortunately this was not possible, due to the current COVID-19 border crossing issues.

“At the one-year mark, in January 2021, we are due to return to Melbourne for his annual check-up.”

Improving access to CAR T-cell therapy

After their experience, Fiona is keen to see CAR T-cell therapy become a frontline treatment for others diagnosed with childhood ALL.

“If this is how they can treat kids with ALL down the track, and not have to go through any of that chemo for two and a half years, it will change the game completely,” said Fiona.

Oren holds a rugby magazine
Oren is a sports fanatic and loves his rugby

“We were very lucky because a year ago we would have had to fund a trip to the U.S. to even get on the treatment and I’ve heard of people selling their houses to do so.

“To my knowledge, it can be up to $500,000 to access CAR T-cell therapy there and the ongoing costs for IVIg are expensive.

“Research is progressing at such an impressive rate and I’m so thankful for all those people in the past that have been through the trials and testing to get CAR T-cell treatment to the place it is now.”

Click here to read about an exciting new research project into Ph-like childhood ALL that the Leukaemia Foundation is funding.

*  Tumour lysis syndrome occurs when a large number of cancer cells die within a short period, releasing their contents into the blood.

**   Posterior reversible encephalopathy syndrome is a rare condition in which parts of the brain are affected by swelling, characterised by a headache, seizures, altered mental status, and visual loss.

Personalised cellular therapy gives Hunter a future

Personalised cellular therapy gives Hunter a future

A cutting-edge cellular therapy, made possible by breakthrough research, has given seven-year-old Hunter hope for a brighter future.

The Madden family
The Madden family, from left, Dave, Hunter, Kate and little brother, Zac

Hunter was three years old when he was diagnosed with an aggressive blood cancer, and standard chemotherapy and transplant treatments proved unsuccessful.

“We found out Hunter has a very rare chromosomal abnormality in his leukaemic cells,” explained Hunter’s mum, Kate.

“Because of that, I always knew he was going to relapse. I didn’t think it would be as early as he did, but in my hearts of hearts, I knew.”

Blood Cancer Taskforce member Dr Rishi Kotecha is Hunter’s oncologist at Perth’s Children Hospital and advocated for Hunter to receive newly approved CAR T-cell therapy at the Royal Children’s Hospital in Melbourne.

Hunter Madden during treatment
Hunter during his treatment for blood cancer

Hunter was just the tenth child in Australia to undergo federally funded, CAR T-cell therapy, only qualifying for the treatment after leukaemia cells were found in both his central nervous system and bone marrow.

“This is unlike any treatment he’s ever had before,” said Kate.  “His T-cells were extracted and sent to America to be re-engineered.

We then got them back, and he was given a small 10ml syringe of these new ‘super cells’.

Even though the process of engineering the cells and having them returned is complicated, from Kate’s perspective, it was quite straightforward.

“It was relatively simple, almost too simple, but it put him into remission.”

Hunter’s dad, Dave, is adamant research is the key to making a difference for families struggling with blood cancer.

“It’s because of research Hunter has been given another chance,” Dave said.

“It means everything to people like us who have seen our son struggle through these toxic treatments for over half his life.”

“The more support we can offer to research and clinical trials, the better.”

“It’s sad Hunter had to go through the trauma of his transplant, because he only started feeling like himself again nine months after the transplant,” added Kate.

“It only took six weeks after CAR T-cell treatment to get my happy, vibrant, healthy, energetic, little boy back.”

Drug discovery has remarkable potential for high-risk childhood leukaemia

Drug discovery has remarkable potential for high-risk childhood leukaemia

Exciting research is laying the groundwork to develop a promising new targeted therapy for aggressive subtypes of childhood leukaemia including infant acute lymphoblastic leukaemia (ALL).

Dr Michelle Henderson in the lab
Dr Michelle Henderson: “It’s going to become a reality that across the country every child’s cancer will be sequenced

Lead investigator, Dr Michelle Henderson is a senior scientist, project leader and joint Research Manager of Molecular Diagnostics at Sydney’s Children’s Cancer Institute.

Before moving to the Children’s Cancer Institute, Dr Henderson spent 10 years working on the genetics and molecular biology of breast cancers at the Garvan Institute of Medical Research.

“Fourteen years ago, the opportunity to move to the Children’s Cancer Institute came up,” explained Dr Henderson.

“After spending years studying individual genes involved in cancer, I wanted to take a step closer to the clinic where I could potentially discover new treatments and have a more direct impact on people with cancer.”

While major research advancements have significantly improved survival rates in childhood leukaemia, Dr Henderson and her team are working to target certain subtypes of childhood leukaemia that still have very poor prognoses.

These include children who fail induction treatment, relapse during treatment or whose leukaemia harbours chromosomal rearrangement of the Mixed Lineage Leukaemia (MLL) gene*, an abnormality that occurs in 90% of infant ALL, with a survival rate of less than 50%.

“It can be an extra challenge with children as their bodies are still developing and these chemotherapeutic agents that work so well for leukaemia can still be very harmful to the patient,” said Dr Henderson.

“If it’s a more aggressive cancer then that child will receive more aggressive treatment and that can affect them later in life, leading to physical problems such as heart disease, osteoporosis, infertility, obesity, or even the risk of a second cancer.

“This presents an urgent need for the development of novel treatment strategies incorporating more selective, targeted therapies, allowing for a reduction in chemotherapy dosage and toxicity.”

For the past 10 years, Dr Henderson’s lab has collaborated with a lab in Buffalo, New York, conducting ‘screens’ with the aim of finding new drugs which specifically kill cancer cells without affecting normal cells.

Together they have discovered a new drug, OT-82, which has ‘remarkable’ potential to improve treatment in aggressive childhood leukaemia.

Dr Henderson’s research was awarded a Priority-driven Collaborative Cancer Research Scheme (PdCCRS) grant in 2019 to further develop this therapy.

This grant was co-funded by the Leukaemia Foundation, The Kid’s Cancer Project and Cancer Australia.

“This drug, OT-82, blocks the production of a cellular biochemical called nicotinamide adenine dinucleotide (NAD) which rapidly dividing cancer cells can be dependent on for energy,” said Dr Henderson.

“NAD is also a co-factor for a number of enzymes that help the cell repair itself and so leukaemia cells can require a lot of it because they’re continually growing and need to repair themselves all the time.

“Based on the knowledge that cancer cells depend on NAD more than normal cells, researchers have tried for many years to design a compound that actively targets and inhibits production of NAD. But a suitable compound was yet to be found.”

Although not looking to target this pathway in particular, Dr Henderson and her collaborators in the U.S. came upon such a compound through a screening strategy aimed directly at blood cancer cells.

“We were surprised when the compound that came out of the search appeared to be an inhibitor of an enzyme called NAMPT (nicotinamide phosphoribosyltransferase), which is necessary for producing NAD in the cell but whose association with blood cancers was unknown,” she explained.

“This particular compound universally kills blood cancer cells, but the normal blood cells just go into a pause.

“The normal blood cells don’t die, they are just in pause and then when you stop treating them, they rejuvenate again, whereas the cancer cells don’t.

“It’s interesting that we’ve come across it through a completely blind approach of just screening thousands and thousands of compounds and found one that targets blood cancer cells.

“This compound seems to be very well tolerated so far in adult trials and is earmarked for going further into paediatric trials.”

With this grant, Dr Henderson and her team are laying the groundwork for these paediatric trials, by determining which children could be most responsive.

“Part of our research is to determine exactly which subtypes of leukemia will respond, both on a broad, phenotype level, and at a molecular level, to find which genes are expressed in that particular cancer,” said Dr Henderson.

“We want to have a set of biomarkers, or subtype markers, that say if a patient has this cancer and it expresses this gene or mutation, they are more likely to respond to OT-82.

“So far, we have found a set of very responsive patient samples that each have mutations in DNA repair genes.

“We think that when they have a weakness in their DNA repair, with the cancer cell having to grow so rapidly and requiring NAD for repair, that’s when they are particularly responsive to OT-82.

“We are also looking at how OT-82 can be used in combination therapy to promote the response to other drugs currently being used for leukaemia treatment.”

The impact of this project is further enhanced by a collaborative grant recently awarded to the Children’s Cancer Institute to deliver personalised medicine to every child in Australia.

“It’s going to become a reality that across the country every child’s cancer will be sequenced,” said Dr Henderson.

“Such a completely individualised approach to treatment means that OT-82 could have an incredible impact on patient survival outcomes.”

Inhibiting NAD also appears to be relevant to some other cancers that depend on the same pathway.

“They might be solid tumours like sarcoma or brain tumours with certain genetic mutations you can screen for that cause dependence on this particular pathway,” said Dr Henderson.

The next big challenge for the research team will be gearing up for a paediatric leukaemia clinical trial.

“That’s why this funding from the Leukemia Foundation, The Kid’s Cancer Project and Cancer Australia is so important,” said Dr Henderson.

“Even though a relatively small number of children may have these high-risk leukaemia subtypes, it will have a significant impact on survival outcomes for this group and may be applied across other cancer types.

“The whole team is so thankful to have the opportunity to gather this supporting evidence and make a real case for OT-82 to be taken to clinical trial stage for these deadly childhood leukaemias.”

*Also referred to as Mixed Lineage Leukaemia Gene Rearrangement (MLL-r). This occurs when a piece of DNA is swapped with another chromosome which results in two different genes being abnormally joined together. The resulting protein can no longer control the development of the blood system and blood cells grow out of control, resulting in leukaemia.

From PhD in Melbourne to postdoc in New York

From PhD in Melbourne to postdoc in New York

The Leukaemia Foundation’s National Research program has supported the careers of the brightest researchers and clinicians, like Matthew Witkowski, for almost 20 years.

Matthew Witkowski
Matt Witkowski is investigating what drives ALL cells to be resistant to therapy and how their environment influences relapse

His research is a prime example of how critical research funding is to understand the biology and genetics of blood cancers and to developing new treatments.

A young Matt with medals and trophies he and his two brothers had won, including the under 11s footy grand final for Diamond Creek in 2001.
Matt with medals and trophies he and his two brothers had won, including the under 11s footy grand final for Diamond Creek in 2001

Matt’s career trajectory was kick-started when he won the under 11s footy grand final for Diamond Creek in Victoria! He has since moved from sport to science and, after completing his Honours at the Walter and Eliza Hall Institute (WEHI) in Melbourne, was awarded a PhD scholarship from the Leukaemia Foundation.

Now he’s working as a postdoc scientist at the New York University School of Medicine in the U.S. and his sights are focused on improving the effectiveness of CAR T-cell therapy.

When ALL News spoke to Matt, he had just presented on The relapsed B-cell acute lymphoblastic leukaemia immune microenvironment and won the first prize post-doctoral Eugene Cronkite 2019 New Investigator Award at the International Society for Experimental Haematology conference in Australia.

Matt Witkowski and mum Tina
Matt Witkowski with his mum, Tina Witkowski, at the Walter and Eliza Hall Institute during his PhD scholarship

He explained that back in 2011, when he applied for a PhD scholarship, “the Leukaemia Foundation was very competitive, but I was lucky enough to receive it”.

Matt’s PhD, from January 2012 to December 2014, was valued at $120,000.

“It was my first scholarship. It was a big deal for me, and relieved a lot of the stress,” said Matt.

“You knew someone cared about what you were doing as a student and that it was worth investing in. That’s critical at the point when you are learning the lay of the land in science.”

Matt did his PhD in lab of Dr Ross Dickins which was then at WEHI*.

“The Leukaemia Foundation was a big supporter of our lab and was a constant support and funding stream. Our lab thrived on that bit of stability,” said Matt.

“You do a lot of work all the time, in science. You’re constantly working, so you don’t want to worry about funding, especially when the Australian government can swing around in terms of how much they are investing in science.

Matt Witkowski, right, with from left, Grace Liu, Ross Dickins* and Mark McKenzie** from Dr Dickins’ lab at the Walter and Eliza Hall Institute
Matt Witkowski, right, with from left, Grace Liu, Ross Dickins* and Mark McKenzie** from Dr Dickins’ lab at the Walter and Eliza Hall Institute

“We were a small lab with one post doc, two students, and Ross as well. It was one of the few acute lymphoblastic leukaemia labs at WEHI at that time,” explained Matt.

“We were working on ALL because it is the most common cancer in kids and the most common cause of cancer-related death in children. I work on B-cell leukaemia, which is the most prevalent form of ALL.

“Students are the powerhouse of a lot of labs, especially ours.

“The other student in the lab, Grace Liu [also a Leukaemia Foundation three-year PhD scholarship recipient (2010-2012)] and I were producing a lot of the data.

“We both got meaningful papers out of it, which put us in good stead for building a career in the field” said Matt, and this was important for his career going forward.

Matt was investigating genes defective in leukaemia patients who showed resistance to chemotherapy, which would suggest that these particular genes dictated a patient’s ability to respond to chemotherapy.

“My work has focused on the Ikaros gene and defining how Ikaros interacts with other genes in a leukaemia cell to drive chemotherapy resistance and cancer development,” he said.

“By understanding these interactions, explanations for why patients who lack the Ikaros gene do not respond to therapy may become clear.

“Ultimately, this may lead to alternative therapy for ALL patients who would otherwise not respond to common chemotherapeutics.”

Matt had papers published in both Leukemia and The Journal of Experimental Medicine, and prior to completing his PhD, he went to a conference in Colorado in the U.S. where he met his current boss, Iannis Aifantis, an internationally recognised immunologist and cancer biologist, who heads a laboratory at New York University (NYU).

“He had read our papers and said, ‘do you want to come to New York for an interview in the lab?’.

“To be honest, New York wasn’t on my list. It seemed a little daunting. However, Luisa Cimmino, a previous postdoc with Ross Dickins, who was in the Aifantis lab, said ‘come to New York, it is really nice here’.

And so Matt went to further his career and research in New York. He went from a lab of four people to being a postdoc in a lab of 29! He’s still there now, continuing his work in ALL, “and it has been great ever since, just working away”, he says.

“I was able to extend on what I did in Ross’ lab. I worked in the same disease, ALL, but new technologies were coming out from the States and I could use them straight away.

“Leukaemia is a very complicated disease. You have a cell that is abnormal and it grows and grows in your bone marrow and spreads.

“What we did in Ross’ lab during my PhD, was provide really valuable information about what the genetic changes were in cells that made them transform into leukaemia. We used very novel tools to do that.

“Ross had brought that back from America and we took advantage of that to understand what underpinned leukaemia emerging and causing disease, and treatment resistance.

“When I went to America, I thought; how does the bone marrow itself influence the leukaemia? It obviously doesn’t grow on its own. It grows by interacting with everything around it.

‘When a patient presents with the disease that is throughout their bone marrow, then they get treatment, a small amount of leukaemic cells will just hang around and eventually the patient may relapse with the disease.

“My question was, ‘is there something that actually drives that small population of cells that are resistant to therapy to hang around, and what is the influence of the environment on these cells that would mean they would eventually not respond to therapy and inevitably cause relapse in these patients’.

“I was able to do a lot of that in the U.S. where we had new technologies where we could look not only at the leukaemic cell, but also everything surrounding it.

“We could deconstruct and pull apart the whole landscape of the bone marrow and understand all of the components and how they were talking to the leukaemia to keep it alive.

“What we have been able to do at NYU is use novel technologies to understand the whole system and how it evolves over time. We think we might be able to intervene with how the environment keeps the leukaemia alive, as a means of improving therapy,” said Matt, first author on a paper about this work that was published in Cancer Cell in June 2020.

“If you just stop these populations of cells from supporting leukaemic cells, you might be able to improve therapies that are already quite good in leukaemia.

“By just taking into consideration that you don’t just treat the leukaemia, sometimes you have to treat the things around it that would potentially support it surviving. This is a new paradigm in a lot of therapies.”

Matt has continued to keep in touch with an Australian ALL patient, India Papas, who he met through the Leukaemia Foundation when she was young.

“Every so often I ask Jodie [her mum] how India is going, and she seems to be doing really well…she has grown up.”

Matt said, looking to the future, his holy grail was to understand why some patients fail CAR T-cell therapy.

“This therapy harnesses a patient’s own immune cells to kill their tumour. It was originally utilised at the Children’s Hospital of Philadelphia and St. Jude Children’s Research Hospital (Memphis) as a way to treat B-cell leukaemia.

“Initially, it looked great. It looked like taking T-cells out of a patient and repurposing their own cells to kill tumour cells was going to be a really nice curative treatment.

“But it turns out that now we are a few years out from those initial trials, they [CAR T-cells] are not as effective as we thought. There are patients relapsing.

“It is an expensive therapy as well. In the U.S., it costs USD500,000 for a single treatment with this drug.

“There have to be ways to mitigate the relapsing that emerges from this. Not all of them are because of the drugs or because the B-cells they are targeting are naturally resistant. Sometimes there are other mechanisms.

“My goal is to start a group that tries to understand why patients fail this therapy.

“My initial work, in understanding how the bone marrow is composed, provides a good platform to understand how the environment informs how these new immune therapies are working.

“That is the goal in my immediate future, to start my own group where I can do this… to be around these therapies and take advantage of the fact that patients get biopsies which lets us see how they perform over time and why they don’t respond or why they do.

“There is also something called Bi-specific T-cell engagers. They hook leukaemic cells up to cells in the body that, if activated, kill leukaemia cells.

“There is a drug, called blinatumomab, that has done pretty well in this kind of field, where you are depending on the environment to kill the cells by using CAR T-cells and blinatumomab.

Matt Witkowski holding up a fish and fishing line
During a vacation in Maine, Matt threw in a line and came up trumps

“Once we understand what the environment is and how it influences the leukaemia cells, it might inform us which patients may not respond to these drugs. We have made the assumption that the environment is going to allow these drugs to work, but we don’t know that,” said Matt.

Matt said he was open to potentially moving back to Australia to start his own lab or to do that somewhere in America.

“I may come back to Australia but I’m not definitive about anything at the moment,” he said.

* Dr Ross Dickins subsequently moved to the Australian Centre for Blood Diseases at Monash University.

** Mark McKenzie was supported by a three-year Leukaemia Foundation Postdoctoral Fellowship (2010-2012).

Navigating childhood blood cancer during a pandemic

Navigating childhood blood cancer during a pandemic

This Childhood Cancer Awareness Month, we’re celebrating little legends like three-year-old, Archer Bermingham. Archer spent nine months, hundreds of kilometres from home and across state borders, undergoing life-saving blood cancer treatment during the COVID-19 pandemic.

Hailing from Lennox Head, a small coastal town in northern New South Wales, the Bermingham family live just a couple blocks from the beach and were enjoying the first weeks of summer, swimming and playing outdoors.

“Arch had started taking day naps for the first time in a long time and we thought it was because he was so active and wearing himself out,” his mum, Claire, explained.

“He had a couple of nights when he had fevers, so I had given him Panadol and he was able to go back to sleep.

“But after a couple of days we took him to our doctor who ordered urine tests which came back negative, but his night fevers were persisting.”

The Bermingham Family
The Bermingham family had celebrated Archer’s third birthday the week before his diagnosis with an aggressive blood cancer called leukaemia in early December 2019. 

The morning of his diagnosis, Claire noticed he was limping and then a tiny speckled rash had started to appear on his abdomen.

“We returned to our doctor who sent us straight to the local emergency department for blood tests and possible imaging,” said Claire.

“It was there we were advised of suspected leukaemia and Archer was transported to Brisbane that evening where it was confirmed he had B-cell acute lymphoblastic leukaemia (ALL).”

The family travelled to Queensland Children’s Hospital in Brisbane, a 360km four-hour round trip from their home across the New South Wales-Queensland border.

“Archer underwent five phases of intensive chemotherapy, achieving remission in January 2020, which was a huge relief,” Claire said.

“Initially, we were told this intensive treatment would only last four to six months, but it’s ended up being almost nine.”

Archer spent nine months away from home for treatment
Archer spent nine months away from home while having life-saving treatment.

“There’s only so much tiny bodies can take, and we’ve had a few delays here and there when his body just needed a little bit of time to recover.”

The family of four, including Archer’s dad, Matt, and one-year-old baby sister, Lara, stayed at a Leukaemia Foundation Patient Accommodation Village for the duration of Archer’s treatment.

“From the day after Archer was diagnosed, we had a beautiful unit to call home and that’s just meant the world to us,” said Claire.

“It’s such a beautiful community feeling with the other families. The kids can play safely and we’ve made some beautiful friends.

“It’s so nice to know we’re not alone in this, especially during this pandemic. We just wouldn’t have felt comfortable having Arch in a public hotel.

“We felt so safe there knowing that everyone else is in the same boat and taking the same precautions. It really became our safe haven.”

Archer has now completed his intensive treatment with flying colours and will start the maintenance phase of treatment, which will take 18 months.

“We have had a few teething issues getting used to dosages and the terrifying free-fall of being let loose back into the real world,” said Claire.

The family were able to return home on 10 September 2020, just in time to celebrate Lara’s second birthday.

“It’s lovely to be back home, the COVID-19 border closure had been really difficult, and we hadn’t seen our families for over month,” said Claire.

“Arch will be able to have his six-weekly reviews, blood tests and port-flushes at Lismore Base Hospital and then we have special consideration to return for Brisbane for his three-monthly maintenance treatment.

Archer Bermingham, ALL survivor
Archer now faces another 18 months of maintenance treatment.

“These will just be day trips where Archer and I will only be allowed to come straight to the hospital and remain completely isolated for his treatment.

“I’ve been told this process is very strict and can be intense, but at least we can still access the treatment he needs in Brisbane. Hopefully, everything stays on track and the travel restrictions will ease soon.”

Claire has also become passionate about raising awareness of childhood cancers and the long-term effects it can have.

“There is a lot to learn. When Arch was diagnosed, I didn’t even realise leukaemia was a form of cancer and just went in so blind,” Claire said.

“You’re in a situation where you’re making really critical decisions, on not a lot of sleep and with limited knowledge.

“It’s hard to blindly trust people with your child’s life but you really have no choice.”

She has since made it her mission to learn everything she can about Archer’s blood cancer and treatment.

“I felt the tiniest bit more steady by educating myself when our world was falling apart,” she said.

“But then the reality hit me like a tonne of bricks. Although the initial diagnosis is still the worst moment of my life, I was really at my lowest a couple of months after.

Archer and mum, Claire
Archer and mum, Claire.

“I feel like if I’d been prepared from diagnosis with the knowledge of long-term implications, it wouldn’t have come as such a hard blow when that realisation did hit.

“It’s tough because the hype has worn off from the outside world, everyone goes back to their lives but yours is changed forever and you realise you’re in it for the long haul.”

Claire’s advice to other parents is to just take it ‘day by day, hour by hour, minute by minute and keep putting one foot in front of the other’.

“Your family is stronger than you believe. Your child is stronger than you’ll ever know. And you are stronger than you give yourself credit for.”

Claire’s top tips for parents:

  1. Trust your instincts, be kind to yourself, cry in the car, eat the chocolate.
  2.  Always, always be nice to your nurse; they will save your child more times than you realise.
  3.  Talk to other parents; no two stories are the same but no one else will truly get it.

Baby Daisy spends first year conquering blood cancer

Baby Daisy spends first year conquering blood cancer

To mark September’s Childhood Cancer Awareness Month, we’re sharing the inspiring stories of little warriors like Daisy, who was diagnosed with an aggressive blood cancer at just four months old.

Childhood cancer survivor, Daisy
Childhood cancer survivor and ‘little warrior’, Daisy Neve

No parent ever wants to hear the words: ‘your child has leukaemia’ but imagine hearing them within weeks of welcoming your child into the world.

That was the devastating reality for the Neve family, who were rocked by baby daughter Daisy’s leukaemia diagnosis in early 2019.

“We had no idea when we took her to emergency that she was so sick, “ Daisy’s mum, Jacinta, said.

“We thought she had a virus because her only symptoms were lack of appetite, some small bruises on her legs and a bloated abdomen, which had only appeared the day before.”

Living in the eastern suburbs of Perth, a 45-minute drive to the hospital, the family were forced to leave their home for Daisy’s intensive treatment.

Daisy spent a total of 240 days in hospital for intensive treatment
Daisy spent a total of 240 days in hospital for intensive treatment

“Because Daisy was under one, her treatment is very different to the older kids,” Jacinta said.

“She had to stay as an inpatient for the duration of her intense rounds of chemotherapy – a total of four rounds and 240 days, all spent in hospital!”

During her treatment Daisy experienced many setbacks.

“She got extremely sick with pneumonia, a fungal lung infection, sepsis and cellulitis, all at the same time,” Jacinta explained.

“We have since found out that her body metabolises the oral chemo differently, so we have had to give her another drug to make sure it’s doing its job properly.”

At the time of her diagnosis, Daisy was much too young to understand blood cancer and the reasons for her intensive treatment.

However, Jacinta and her husband, Matt, made sure to sit down with Daisy’s older brother, Jack, who was two and a half at the time, to explain what was happening.

“We explained Daisy’s blood was sick, that she had some bad cells and the medicine the doctors gave her was killing them,” Jacinta said.

“We read books with him that helped explain cancer and how Daisy would lose her hair.

“We also tried to remain positive and didn’t let him see her when she was at her sickest.”

Daisy and Jacinta were away from their home for a total of nine months.

The Neve family
The Neve family

“We missed out on many special occasions and the mum-guilt gets me every time, spending so much time away from my husband and son,” said Jacinta.

“We were overwhelmed by the incredible support we received from everyone but being away from home for so long was definitely the hardest part.

“Speaking to people from the Leukaemia Foundation on the phone and receiving their support has been great. Having someone to chat to and share our story has been really helpful.”

Daisy has now entered the maintenance phase of her treatment, which she will hopefully complete in January 2021.

“Maintenance for Daisy is oral chemo at home every night and we have a monthly review to adjust her doses as she needs,” Jacinta explained.

“She also receives weekly immunoglobulin infusions, which I give to her at home through an injection in her leg, until her immune system has rebuilt.”

Jacinta and her family call Daisy ‘our warrior’, drawing motivation and hope from the way she has undergone treatment without complaint.


Daisy Neve during treatment
Daisy during treatment

“She willingly has blood tests without shedding a tear, even picking out which finger nurses can prick,” said Jacinta

“She wouldn’t make a sound when having dressing changes.

“I’m also constantly inspired by all the other families on the ward who have gone on this journey with us.

“Some have lost their beautiful children and some are still fighting, just like us, but we are a one big family, all connected by our experience.”

To honour their blood cancer journey and others going through the same, the family will be taking part in the Leukaemia Foundation’s Light the Night event for the first time this year.

“It means everything to us to participate. We have seen first-hand how blood cancer has affected our family and so many others,” Jacinta said.

“Raising more awareness not only for blood cancer but for childhood cancer is the most important thing to us. Awareness equals funding, which equals a cure.”

Jacinta’s advice to other parents

  1. Ask your doctors questions, don’t feel silly and ask them to repeat the answers a hundred times if you need them too.
  2. Take photos and write a journal, it helped so much to have all Daisy’s blood counts written down and what she has done each day, as well as a little note to her about how she was doing.
  3. Reach out for help, from meals, to washing and cleaning, visitors and even financial help accepting help made our journey that little bit easier.

Thank you for keeping Gavin’s family close during a bone marrow transplant

Thank you for keeping Gavin’s family close during a bone marrow transplant

Gavin Hill outside in the garden
Gavin Hill, ALL survivor

Gavin thought leukaemia was only a children’s cancer until the day his shock diagnosis completely changed his family forever.  

 In early 2019, Gavin and his wife Jen had just returned to their home in Bundaberg after travelling around Australia.  Their beautiful daughter Dusty has just started school 

Life was good.  

“Work was going well for me, and my partner, Jen finally had the opportunity to go back to Uni,” said Gavin.   

Just like many of us might think, Gavin suspected he was simply working too hard when he became run down and struggled to shake a couple of infections 

Jen encouraged Gavin to go to the GP to get checked out.  

Before he could catch his breath or make plans with the familyGavin was flown straight to Brisbane from his family home in Bundaberg and was diagnosed with acute lymphoblastic leukaemia (ALL). 

Gavin Hill
Gavin during treatment

It didn’t really mean much to me at that stage. I knew next to nothing about it,” admits Gavin.   

This is the moment support like yours comes alive. The moment just after his wife Jen and young daughter Dusty drive hundreds of kilometres to be by Gavin’s side, not knowing how long he’d be there or just where they could stay.  

We connected with the Leukaemia Foundation and were offered a unit at the Patient Accommodation Village and lots of great information.  

“It blew me away what the foundation was providing for the people in our situation every day of the week.”  

After two full cycles of chemotherapy failed, Gavin was lucky to find a suitable bone marrow donor from the Australian Bone Marrow Donor Registry.  

“There was no option B for me – if I didn’t get the transplant, I didn’t have a hope of surviving.”  

Gavin, Jen and Dusty continued to stay at the Leukaemia Foundation Village while he completed the 100-day recovery.  

Gavin and his family recently returned home to Bundaberg and slowly but surely, they’re returning to everyday life.  

I was a new mum with blood cancer

I was a new mum with blood cancer

Sarah Fazulla and her young daughter Blair
Sarah Fazulla with her daughter, Blair

Mother’s Day will be extra special this year for young mum Sarah Fazulla.

This year’s will be 27-year-old Sarah’s second Mother’s Day – but the first she’ll be celebrating cancer free.

Last year, as she held her beautiful first baby, Blair, she didn’t know she had blood cancer.

Just weeks later, she was hundreds of kilometres from her home in Broken Hill, NSW, taking her own first steps on what was to be a long road of life-saving treatment in Adelaide after being given the double diagnosis of acute lymphoblastic leukaemia and lymphoma. Both are dangerous types of blood cancer.

“At first I refused to get on the plane. I had a little baby. I was still breastfeeding. I couldn’t just up and leave. It required some planning. I had lots of other things going on at the time,” Sarah said.

Sarah didn’t want to be apart from Blair – and luckily her mum, Pauline, was there to help.

Becoming a carer

Pauline shares a smile with her granddaughter, Blair
Pauline shares a smile with her granddaughter, Blair

Pauline left her 15-year-old son at home and her business in the hands of her husband and took on the care of her baby granddaughter, while helping Sarah through her treatment.

For the past 12 months the family has been able to stay with the Leukaemia Foundation as Sarah spent weeks in hospital. Every day, Pauline bought Blair to see Sarah so they could spend as much time together as possible – not knowing what the future would bring.

“When Sarah was diagnosed I was very much overwhelmed,” Pauline said. “But I felt I had to hold it all together for her because she not only had herself to think of, but also Blair.

“I was extremely worried we might lose her. It was very hard.

“I never really thought twice about dropping everything to come with her. She is my girl, and she was going through so much at the time. She needed me.

“During the first block of treatment Sarah was in hospital for 38 days. I had Blair the whole time. Luckily she was a fantastic baby and she would eat and sleep so well in the hospital, and Sarah loved having Blair there.

“I’m sure it helped Sarah with her treatment. It kept her positive and hopeful.”

Feeling lonely during cancer

Pauline said at the end of the day there was time for a quick meal, bottles and bed before it would start all over again the next day.

Pauline added: “It was extremely lonely at that time, never really knowing what was going to happen.

“I was lucky I didn’t really have much time to think about it, as I was too busy looking after a baby, running into the hospital to be with Sarah as I didn’t want her to be on her own, and I knew she wanted to be with Blair.

“When we moved into the Leukaemia Foundation accommodation, it was overwhelming to think I wasn’t going to have to worry about the cost of staying in Adelaide for an extended period. I was really relieved.

“Word’s cannot express how I felt. It took a lot of worry off my mind.

“There is a wonderful community here. We support each other and the staff are the best. I don’t know what we would have done without the Leukaemia Foundation.”

Stem cell transplant for blood cancer

Sarah’s treatment was long and difficult. At times she was having three doses of chemotherapy in one day, as well as lumbar punctures – with the treatment being injected directly into her spine to kill off any hidden leukaemic cells.

There were many debilitating twists and turns in Sarah’s treatment, and eventually it led her to a stem cell transplant.

In May 2020, Sarah reached day 91 of 100 post-transplant, only days away from going home after almost 12 months in treatment.

Mum Pauline was by Sarah’s side every step of the way, keeping baby Blair by her side so Sarah was able to continue to be a mum, too.

“I am looking forward to being a mum properly. I’ve lost so many days and nights where I was unwell and couldn’t do normal mum things,” Sarah said.

“I appreciate all the little things now – it’s all the little things I look forward to.”

Sarah, Blair and Pauline
Sarah, Blair and Pauline (L-R) have been treading a difficult path together for a year but the end to Sarah’s blood cancer treatment is finally in sight.

Gavin’s life saved by a perfect stranger: “There was no option B for me…”

Gavin’s life saved by a perfect stranger: “There was no option B for me…”

Gavin Hill outside in the garden
Gavin Hill, ALL survivor

Gavin Hill was able to conquer his blood cancer thanks to a fellow Aussie’s generous spirit

In early 2019, Gavin and his family had just returned to their home in Bundaberg after travelling around Australia.

“Work was going well for me, I was working in flooring, and my partner, Jen finally had the opportunity to go back to Uni,” said Gavin.

“Then I started to get a bit run down and was struggling to shake a couple of infections with flu-like symptoms which I had put down to working too hard.

“I also had lost a bit of weight and was getting really bad night sweats.”

Jen encouraged Gavin to go to the GP to get checked out.

Gavin with wife, Jen and daughter, Dusty
Gavin with wife, Jen and daughter, Dusty

“The doctor ordered a blood test,” explained Gavin. “I had told him about the travelling we had done in northern Australia – he suspected an infection and kept asking about mosquito bites.”

“He called the next day asking me to come straight back in. From there we were directed to the emergency department of Bundaberg Hospital and we were basically flown straight to Brisbane.


“After seeing several specialists, they finally diagnosed me with acute lymphoblastic leukaemia (ALL), which really didn’t mean much to me at that stage. I knew next to nothing about it and thought of leukaemia as a child’s cancer.”

“It’s funny though, I had been noticing blood cancer in the media, but I didn’t pay attention until I actually was diagnosed myself.”

Brisbane for treatment

Gavin started chemotherapy immediately at the Royal Brisbane Hospital with Jen and daughter, Dusty driving down to join him.

“It didn’t take long for us to be directed to the Leukaemia Foundation and we were offered a unit at the Patient Accommodation Village and lots of great information.

“It blew me away what the Foundation was providing for the people in our situation every day of the week.”

“I was high risk right from the start so had two full cycles of chemotherapy, neither of which worked unfortunately,” explains Gavin. “I was refractory against the chemo and the leukaemia started fighting back.

“Luckily, there was a new drug to get my levels down so I could proceed with a bone marrow transplant.”

Transplant time

Gavin underwent his transplant at the end of July, receiving bone marrow from an unrelated-matched donor from the Australian Bone Marrow Registry.

While almost a third of bone marrow transplant recipients find a match within their family, for the remaining 70%, the Australian Bone Marrow Donor Registry (the Registry) matches patients to unrelated donors, both in Australia and around the world.

The Australian Bone Marrow Donor Registry (ABMDR) has a campaign to recruit 5000 new stem cell donors by September 2020 and the Leukaemia Foundation proudly supports this goal. Click here to find out more.

“A young guy from Australia was my donor – I received a really nice card off him as I was about to go into my transplant.

“As the recipient I do have to wait a year before I can get into contact. I would love to just thank him, tell him just how grateful I am and what an amazing person he is.

“There was no option B for me – if I didn’t get the transplant, I didn’t have a hope of surviving.”

Major complications

Gavin experienced major complications early into the transplant, suffering side effects from some of the drugs he needed to take.

“There is a major increase in risks and complications with your organs. My major complication post-transplant was veno-occlusive disease of the liver.

“I think I was in a bad way for a while and ended up being in hospital for five weeks. It set me back a long way, but we came out on top at the end.”

Gavin, Jen and Dusty continued to stay at the Leukaemia Foundation Village while he completed the 100-day recovery.

Keeping family together

Dusty had only just started prep when Gavin was diagnosed and attended the children’s hospital school in Brisbane for most of the year.

“We were able to keep her enrolled in her old school so could just pick up where she left off when we got back home.

“She handled it pretty well, we never hid anything from her and tried to explain everything as best we could – obviously seeing me in those low times was scary for her.

“She’s much happier now and was able to head back to her old school for the last four weeks of the term.”

Gavin, Dusty and Jen on their first outing post-transplant
Gavin, Dusty and Jen on their first outing post-transplant

Gavin and his family returned home to Bundaberg late last year and slowly getting back into everyday life.

“It’s certainly put a lot of things into perspective for me,” said Gavin. “Obviously, work is an essential part of life, but I certainly don’t want to rush back in and will just be focusing on my recovery for now.”

Blood cancer doesn’t stop: Ari’s story

Blood cancer doesn’t stop: Ari’s story

Baczynski Family at a Leukaemia Foundation accommodation unit
The Baczynski family are still facing up to life with blood cancer despite coronavirus

Ari Baczynski, aged 4, was diagnosed with blood cancer last year. She must still travel across Queensland to hospital each month for life-saving treatment, but now her family must face the added challenges brought about by COVID-19.

Ari’s mum, Bonnie, spoke to us about the ways the family is protecting itself and the impact the virus is having on their lives.

Our biggest concern is if there will be a bed for Ari should the hospitals become too full

Self-isolation and social distancing

Last week the hospital sent an information sheet to oncology patients, including us, and their recommendation is to avoid sending  young people who are being treated for cancer to school, kindy or daycare, and to avoid taking them to shopping centres. Basically, they recommended we self-isolate as much as possible and they’re trying to limit traffic through hospitals as well.

My husband, Elliot, still needs to work running our small business and my six-year-old son, Oren, is still attending his tiny primary school of only 21 kids.

Elliot is taking extra precautions and works from home as much as he can. I feel confident the school is taking all measures possible to keep the kids safe as there are already a few high-risk children at the school.

Essential services

We’re currently trying to apply for online grocery orders; the supermarket will now only do them for senior citizens and immune-compromised people. We’re still waiting for our application to be approved and to provide proof of Ari’s special case. Luckily, we get our fruit and vegetables delivered by a local business, so we are ok for a while.

We’ve also put a sign up at the front gate for any deliveries to be left on the veranda in boxes.

The problem is a lot of people are now travelling out to the regional areas to get supplies, so our local stores are also running out of essential items.

Practicing good hygiene

Because of Ari’s treatment last year we’re all pretty used to having to isolate ourselves and constantly making sure we’re washing our hands. Ari has her own sink and the whole family has the nail brushes handy for a proper scrub.

Access to treatment

Once a month Ari is still travelling to the city for treatment. Because of COVID-19, the children’s hospital is only letting one parent come for out-patient appointments, so my husband has been going with her while I stay and look after our other children.

Preparing for an emergency

We have a local ambulance and hospital protocol should Ari catch a fever, and a direct line to our regional case manager and to the oncology department at the hospital should we need to speak to anyone.

The oncologist has said to us that if Ari caught the virus it wouldn’t be too bad. She had  Rous sarcoma virus (RSV)  when she was first diagnosed and her immune levels were much lower then. It shouldn’t be too different to that.

Our biggest concern is, if the hospitals become too full, there will not be a bed for Ari should she become ill. If she needs care, what does that look like? The extra demand on the hospital system seems to be the biggest concern of the government as well. It’s the people with the existing conditions, like Ari, that will find it hard.

Words to live by

Everybody needs to come to terms with the fact that we are in for the long haul. I realise this is a big shock for people. I guess those living with blood cancer know what it’s like to be told you must adjust to a new way of life. I think people need to get used to the fact that we are all going to need to make sacrifices for the greater good.


Share your story of living with blood cancer in the COVID-19 crisis.

Tell us how the outbreak has impacted your every-day life and how the Australian community can best support you through this uncertain time.

Also share your message of support for other blood cancer families and advice for keeping safe during the outbreak.

We may then share on this page for our blood cancer community.

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