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Meet the Blood Cancer Taskforce: Carmel O’Kane

Meet the Blood Cancer Taskforce: Carmel O’Kane

Carmel O'Kane, Cancer Nurse Practitioner and Manager of the Wimmera Cancer Centre and the Vice President & Director Professional Practice for the Cancer Nurses Society of Australia.

The Blood Cancer Taskforce is well on its way to developing Australia’s first National Strategic Action Plan for Blood Cancer. We ask some of the Taskforce members what drives their passion for blood cancer.

Why did you want to be part of the Taskforce?

I was identified because of my work with the Cancer Nurses Society of Australia (CNSA). However, my passion to improve equity of care for rural and regional Australians is the reason I want to participate.

What led to you become a part of the blood cancer community?

I’ve been a cancer nurse (for both solid tumours and blood cancers) for 24 years – with the last eight years working in rural and regional Australia. Improving every person’s experience with cancer is very important to me.

What drives your passion to help people with blood cancer?

I see every day how much a cancer diagnosis affects people. And I can see ways that each experience can be improved, many of which are simple things.

I know that we can improve things – that’s what I’m passionate about. In particular, the rural divide is so very frustrating. Being able to be heard at a high level will help to reduce that frustration.

How do you think the Taskforce might improve the lives of people with a blood cancer?

Providing great quality advice to a high level of government will ensure that the ‘on the ground’ clinicians will be better able to make the changes they know are needed to improve the care and experience of these patients.

What is your key piece of advice for someone living with a blood cancer?

Don’t be afraid to ask for help. Contact your local people – whether it’s your GP, a local cancer centre or community centre. There is a lot of help out there, but they won’t know about you unless you tell them!

The Leukaemia Foundation is always there to provide support to people living with a blood cancer – just call 1800 620 420 and ask to speak with your local Blood Cancer Support Coordinator.

Carmel is a Cancer Nurse Practitioner and Manager of the Wimmera Cancer Centre and the Vice President & Director Professional Practice for the Cancer Nurses Society of Australia.

Meet the Blood Cancer Taskforce: Dr Rishi Kotecha

Meet the Blood Cancer Taskforce: Dr Rishi Kotecha

Taskforce member Dr Rishi Kotecha
Taskforce member Dr Rishi Kotecha

The Blood Cancer Taskforce is well on its way to developing Australia’s first National Strategic Action Plan for Blood Cancer. We ask some of the Taskforce members what drives their passion for blood cancer.

Why did you want to be part of the Taskforce?

I am a paediatric haematologist and oncologist, so it was important to be on the Blood Cancer Taskforce to ensure appropriate representation within the taskforce for children and adolescents who are living with blood cancers.

What led to you become a part of the blood cancer community?

I am the clinical lead for paediatric leukaemia and lymphoma for Western Australia and co-lead the Leukaemia and Cancer Genetics paediatric preclinical research program for WA. I have become actively involved in the blood cancer community through these avenues.

What drives your passion to help people with blood cancer?

My passion stems from seeing the suffering that children with blood cancer and their families have to endure. This has driven me to ensure that we develop and have access to the latest clinical trials and innovative agents for children with blood cancer in Australia, such that we provide the best therapy to continually improve outcomes for patients.

How do you think the Taskforce might improve the lives of people with a blood cancer?

The Blood Cancer Taskforce will improve the lives of people with a blood cancer diagnosis through advocacy, education and acting as a representative body for all individuals living with blood cancer in Australia.

What is your key piece of advice for someone living with a blood cancer?

The most important advice would be to be aware of the resources that are available to help someone living with blood cancer. This is not only limited to medical resources but to be aware of support offered by philanthropic organisations such as the Leukaemia Foundation and local NGOs.

The Leukaemia Foundation is always there to provide support to people living with a blood cancer – just call 1800 620 420 and ask to speak with your local Blood Cancer Support Coordinator.

Rishi is a Consultant Paediatric Oncologist & Clinical Haematologist at the Perth Children’s Hospital.

Friendship an “absolute blessing” after bereavement

Friendship an “absolute blessing” after bereavement

Lyn Healy and her late husband Don, standing outside
Lyn Healy and her late husband Don

Not only do Lynette (Lyn) Healy and Lynnette (Lynnie) Coupar share the same name, but also the tragedy of losing a partner to blood cancer.

And this has fostered a deep bond and friendship between the two women. They were brought together in sad circumstances in 2016 during the last months of their husbands’ treatment for myeloma.

Lynnie Coupar (right) with her late husband Bruce

While Don Healy and Bruce Coupar were neighbours in adjoining hospital rooms in Cairns, they didn’t meet up until a Leukaemia Foundation blood cancer co-ordinator played a key role in bringing their wives together.

“Lyn and I had met briefly at a carer’s support group but when Donna introduced us later she said ‘you two definitely need to get together. Both your husbands worked in the mines, you have so much in common’,” said Lynnie, 59, of Cairns, who has two grown-up children and three grandchildren.

“Lynnie and I started becoming friends at the day clinic,” said Lyn, 61, also of Cairns, who has three daughters and two grandsons.

“Our boys were hooked up to their IVs and we all started talking. Then Lynnie and I would head down to the cafeteria for a cuppa or go for a walk and talk.

“We hit it off straight away. We were kindred spirits and shared a bit of black humour. That’s really important for some comic relief when you’re living and breathing blood cancer,” said Lyn.

“Chatting away from the boys, we’d talk about their treatments and white cell counts and ask – ‘how are you going?’” said Lynnie.

“We could talk openly about all our concerns. Talking to someone who is going through the same thing makes all the difference.”

Lynnie’s husband lived with myeloma for 15 years. When Bruce was diagnosed in 2001, the Coupars lived in Melbourne. He had a stem cell transplant and “all the treatments under the sun” before going into remission in 2009.

“After such an intense eight years, we really needed a break, so went travelling,” said Lynnie.

They made their way to Darwin where they spent the next six years. Lynnie flew with an airline and Bruce worked one week on, one week off in the mines in Western Australia.

“When we had time off, we’d fly to Hawaii or Cairns or go down to the Kimberleys. It was a fantastic lifestyle,” said Lynnie.

In 2013, when Bruce relapsed, they flew back and forth to Melbourne for treatment until he ran out of treatment options, and from early-2016 he was managed by a haematologist in Cairns. (The Coupars had moved to Cairns when Lynnie’s job was transferred there from Darwin.)

Don Healy’s blood cancer journey was much shorter. Lyn, a paramedic, was shocked by his myeloma diagnosis in April 2015. His only symptom was a sore back, from picking up an esky.

They were in Mt Isa at the time and went to Brisbane to see a neurosurgeon. Don was referred to a haematologist and the Healys ended up staying in the Queensland capital for eight months.

“Being so far away from family and everything was a real hardship. Luckily, we stayed at the Leukaemia Foundation village which was amazing and great for a bit of companionship which was vital during that time,” said Lyn.

She used all the long service leave she had accrued but Lyn wasn’t able to keep her training up-to-date or do shift work while looking after Don.

“The decision was clear – I couldn’t continue to work,” said Lyn.

Don didn’t respond well to treatment. He had a stem cell transplant in Brisbane, experimental treatments in Townsville and in April 2016, had more chemotherapy in Cairns. (The Healys had moved there and were staying with Lyn’s parents.)

“That treatment didn’t work either and the doctor said – ‘we’re sending you home to spend the time you’ve got with family’,” said Lyn.

“We went to the day clinic for blood or plasma and that’s when we met Lynnie and Bruce.”

Lynnie’s husband died in mid-August 2016; they had been together for 40 years.

Lyn went to Bruce’s funeral and two weeks later her husband died on their 40th wedding anniversary.

“We kept in touch well and truly from then,” said Lyn.

“I don’t know anyone else I can talk to about the things I talk to Lynnie about. It’s just invaluable.

“One of the biggest things is sorting through everything in the house, going through all your memories,” said Lyn who offered to help Lynnie with this.

“We had a really good day together.”

And Lynnie has found Lyn’s friendship and humour indispensable since Bruce’s passing.

“When we go around to each other’s place to catch up, we laugh a lot and talk about where we’re going to go from here,” said Lynnie.

“I can talk to Lyn about anything. She’s been an absolute blessing.”

The pair help each other practically, hanging pictures, fixing gates, using sanders, drills and ladders, and theyhave been camping together, each with their own tent and car.

“That was a real concern of mine. I thought I couldn’t go camping because I didn’t have anyone to go with, but Lynnie said, ‘you just need to set the car up and go’.”

Lynnie had kept her late-husband’s ute and had it fitted out with a canopy and Lyn had an awning that came in handy when it rained during their first trip to Ellis Beach.

“It was fantastic. I absolutely wouldn’t have gone if Lynnie hadn’t suggested it,” said Lyn.

“You have to be braver and do things outside your comfort zone. We want to go fishing out on the reef one day too.”

However much they feel comforted by one another, both still feel the pain of losing ‘their boys’.

“Talking the other day, I said ‘it seems like it’s getting harder’ and Lyn agreed, saying ‘yeah, you miss them more and more as time goes on’,” said Lynnie.

“It’s a different kind of loneliness now.”

Lyn and Lynnie have taken part in the Leukaemia Foundation’s beautiful evening lantern walk – Light the Night – where Australians come together to mark their blood cancer journey or to honour a loved one.

“At Light the Night last year, we were asked to share our side of the story,” said Lyn.

“It was hard, but it felt good to do it as it recognised ‘the boys’ and what the Leukaemia Foundation had done for us.

“It felt really special. Telling our story was another way of honouring Don and Bruce. It was a real tribute to their memory. They will never be forgotten.”

Addressing knowledge gaps in immunoglobulin therapy

Addressing knowledge gaps in immunoglobulin therapy

Dr Khai Li Chai is working to improve the prevention and treatment of infection in blood cancer patients with antibody replacement therapy.

Khai Li Chai
Dr Khai Li Chai

Dr Chai is a specialist clinical and laboratory haematologist based at the Transfusion Research Unit at Monash University (Melbourne). She was awarded a PhD scholarship from the Leukaemia Foundation and the Haematology Society of Australia and New Zealand (HSANZ) in early-2020.

Working with Associate Professor Zoe McQuilten and Professor Erica Wood, her project, Immunoglobulin therapy to prevent and treat infections in patients with blood cancers: who, why, when and how? will evaluate the evidence base, current practise and clinical outcomes of immunoglobulin therapy.

People diagnosed with CLLnon-Hodgkin lymphomamyeloma and those who have undergone an allogeneic stem cell transplant, frequently develop low immunoglobulin (antibody) levels (hypogammaglobulinaemia) due to their disease or as a result of treatment.

In hypogammaglobulinaemia, low levels of antibodies can be associated with serious and/or recurrent infections. Immunoglobulins made from donated blood products and containing vital antibodies can be given to patients to help keep infections at bay.

New technologies, plus an increased understanding of the immune system, mean scientists and clinical teams now have the capacity to create detailed immune profiles of individual patients. Dr Chai will analyse these immune profiles to better understand the capacity of an individual’s immune system to fight off viral and bacterial infections.

She hopes this analysis will help identify new immune markers that can be used to guide and monitor optimal dosing and duration of immunoglobulin therapy. This approach will identify high-risk individuals who may benefit from ongoing treatment and those who are at lower risk and can come off treatment sooner.

“We know that people with blood cancers are at increased risk of infection,” explained Dr Chai.

“As clinicians, we often administer antibiotics and antibody replacement therapy to reduce this risk. A lot of what we do requires more up-to-date information.

“My project goals are to reduce this knowledge gap and ensure that the therapy we provide is not only effective, but safe and sustainable for the future.”

While she enjoys treating patients working as a clinician and pathologist, being able to learn and delve more deeply into the field of research and contribute to better understanding blood cancers is very important to Dr Chai.

“The main thing I want to achieve with my research is to produce findings that make a significant impact in delivering individualised therapy – sustainable therapy that is able to support improved quality of life for people living with blood cancer,” she said.

“The beautiful thing about research is the unpredictability of each day.  

“It can range from reviewing patients in hospitals, examining samples in the laboratory, teleconferencing with other researchers across the world, learning and discussing new concepts in biostatistics and epidemiology with other students at university, or learning more effective ways of performing literature searches from the librarian.

“Each new day brings new learnings, challenges and skills.”

Dr Chai is most excited by sharing and presenting her research findings to her peers.

“We do this virtually now, and we will do this in person again soon,” she said, during the COVID-19 restrictions.

“It is a great feeling to find out that your research is supported and respected by your peers.

“I thank the Leukaemia Foundation, HSANZ and everyone who has made this funding possible for giving me this opportunity.”

Dear Blood Cancer…

Dear Blood Cancer…

The Nott family share their letter to blood cancer to mark World Blood Cancer Day. Their seven-year-old daughter, Nevaeh recently conquered a rare and aggressive blood cancer after an international search for a perfect-match bone marrow donor.

Bree, Neveah and Josh Nott
Bree, Nevaeh and Josh Nott

Dear Blood Cancer,

You changed all our lives last year when you threatened my seven-year-old daughter, Nevaeh’s life.

You forced us out of our home and into a foreign world that we had never wanted to go.

You were one of the most rare and aggressive blood cancers forcing Nevaeh to endure a bone marrow transplant to have a chance at beating you.

Nevaeh in the hospital during treatment
Nevaeh during treatment

You kept us waiting, looking far and wide for a donor who would be a perfect match for Nevaeh – we finally found them, in Germany and we were hopeful this would be the key to your end. 

But you did not give up easily. You continued your fight with infections, viruses and record high temperatures but my little girl showed strength like never before and impressed us all with her determination and fight.

You taught us a lot about ourselves during this time and we overcame challenges we never thought possible. Because of you our family is now even stronger. 

Because of you we met some of the most kind and wonderful people in this world – brilliant doctors, nurses and staff at the Leukaemia Foundation village who all were determined to make sure Nevaeh got the best care and support possible.

Because of them we are now back at home, watching Nevaeh continue to beat you.

From,

The Nott Family

COVID-19 delivers difficult times for blood cancer patients – and more challenges lay ahead

COVID-19 delivers difficult times for blood cancer patients – and more challenges lay ahead

Thursday May 28, 2020

The Leukaemia Foundation has more than doubled the support of people living with blood cancer since COVID-19 hit Australian shores and is warning of more difficult times ahead.

Today, on World Blood Cancer Day, the Leukaemia Foundation is concerned Australia is also about to face a spike in diagnosis rates as post COVID-19 after-effects start to appear.

Leukaemia Foundation General Manager – People Living With Blood Cancer Kathryn Huntley said recent reports had shown around half the usual number of Australians had visited the GP or pathology services during the height of the pandemic. Cancer diagnosis rates have also seen a drastic drop[1].

“Sadly, it’s unrealistic to think Australians have stopped getting blood cancer. Blood cancer never stops – not even through a pandemic,” Ms Huntley said.

“We expect there to be a sudden spike in blood cancer cases and all of those Australians will need access to health services and support from organisations like the Leukaemia Foundation.

“Our Blood Cancer Support Coordinators have seen increased demand for supportive care as those Australians already diagnosed with blood cancer continue to ride the roller coaster of COVID-19.

“They are trying to adapt to the changing health service landscape while managing anxiety due to their increased susceptibility to the disease because of compromised immune systems,” she said.

“We are urging Australians not to postpone trips to their GP or specialist and to address any health concerns immediately.”

Ms Huntley said the symptoms of blood cancer could sometimes be subtle or similar to other conditions such as a virus. However, ongoing symptoms like recurrent infections, increased fatigue or bruising or enlarged lymph nodes should be immediately discussed with your GP.

She said early diagnosis could play a key role in surviving blood cancer – particularly more aggressive types.

The Leukaemia Foundation has been adapting its services to support the Australian blood cancer community, utilising telehealth and conducting Patient Support Groups through virtual webinars and chat rooms, all to help patients navigate new pathways through COVID-19 restrictions. It has also been increasing access to information and responding to a huge jump in website traffic.

Ms Huntley said Australians living with a blood cancer could continue relying on the Leukaemia Foundation to guide them from diagnosis through treatment and towards a life of living well with and after cancer.

“We will work hand-in-hand with the Australian blood cancer community to ensure that all Australians who are diagnosed with blood cancer have access to the right information, treatment and supportive care whenever they need it most.”

“Australians who have blood cancer are particularly susceptible to COVID-19. These are still dangerous times for them and we urge Australians to please continue to practice self-distancing and strict hand hygiene and help to protect our most vulnerable. We also encourage all Australians to download the COVID-19 app to continue to help Australia to minimise further spread of the virus.”

Australians who contract COVID-19 while fighting blood cancer are also more likely to die from the pandemic, with recent UK research suggesting patients with blood cancers are at a higher risk of death if they contract the virus (6-11 per cent)[2]. The fatality rate in people living with blood cancer with COVID-19 is also the highest amongst all cancer patients (33 per cent)[3].

There are 110,000 Australians living with blood cancer, and currently, 41 Australians are newly diagnosed every day.  Sadly 20 lives are lost to the disease each day.

The Leukaemia Foundation’s State of the Nation: Blood Cancer in Australia report projects that these numbers will more than double by 2035. Prevalence of blood cancer will sky-rocket to 275,000 and 100 people are to be diagnosed with the disease and over 40 people lose their life to blood cancer every day.[4]

In light of the Blood Cancer in Australia report, Federal Minister for Health, The Hon. Greg Hunt MP, supported the Leukaemia Foundation to establish Australia’s first Blood Cancer Taskforce.

The Taskforce is now working towards delivering Australia’s first National Strategic Action Plan for Blood Cancer which will provide a blueprint to tackle key issues facing people affected by blood cancer, today and into the future. The National Action Plan is due for release later this year.

If you or someone you know is diagnosed with blood cancer and would like support, please contact a Leukaemia Foundation Blood Cancer Support Coordinator on 1800 620 420 or visit www.leukaemia.org.au.

– ENDS –

[1] Recent reports show that in April alone, visits to the GP dropped by 50 per cent https://www1.racgp.org.au/newsgp/clinical/drastic-drops-in-cancer-and-heart-attack-patients  – a statistic that was mirrored by a 50 percent drop in referrals to pathology services at GP and community clinics https://pathologytechnology.org.au/resources/Documents/Position%20Paper%20-%20COVID-19%20Continuity%20of%20care%20April%20%202020.pdfOpen this document with ReadSpeaker docReader
[2] Wenhua Liang,Weijie Guan,Ruchong Chen et al. Cancer patients in SARS-CoV-2 infection: a nationwide analysis in China. The Lancet Oncology Mar 2020 DOI: https://doi.org/10.1016/S1470-2045(20)30096-6
[3] Hui Li, Liang Liu, Dingyu Zhang et al. SARS-CoV-2 and viral sepsis: observations and hypotheses. The Lancet. Published online April 17, 2020 https://doi.org/10.1016/S0140-6736(20)30920-X
[4] http://www.leukaemia.org.au/how-we-can-help/advocacy-and-policy/state-of-the-nation-my-life-counts/state-of-the-nation-download/

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Better outcomes for aplastic anaemia and bone marrow failure syndromes

Better outcomes for aplastic anaemia and bone marrow failure syndromes

Dr Lucy Fox

Researcher: Dr Lucy Fox (pictured)
Location: Victorian Comprehensive Cancer Centre and Monash University’s Transfusion Research Unit, Melbourne
Research aim: Improving diagnosis to inform strategies for better care and outcomes for aplastic anaemia and bone marrow failure syndromes

 

For the first time in Australia, research by a dedicated PhD scholar is describing, understanding and improving the diagnosis of aplastic anaemia (AA) and bone marrow failure syndromes (BMFS).

More accurate diagnosis of BMFS using genomics evaluation underpins precision treatments that provide a greater chance of cure and to avoid the side-effects and costs of inappropriate therapies.

Many young patients have inherited BMFS, and many patients with inherited BMFS present in adult life. These patients are represented in the Aplastic Anaemia Registry (AAR).

Under the Leukaemia Foundation’s Strategic Ecosystem Research Partnerships and in collaboration with Maddie Riewoldt’s Vision, Dr Lucy Fox received a PhD scholarship of $150,000 (February 2018-February 2021) for research at the Victorian Comprehensive Cancer Centre and Monash University’s Transfusion Research Unit. The Leukaemia Foundation contributed $34,000 to this scholarship.

The aim of the project is to define molecular markers in BMFS, to inform better treatment strategies for survival and quality of life, with clinical outcomes documented by the AAR.

Research focus

  • A literature review on the diagnosis of BMFS and the role of genomic testing.
  • Laboratory (genomics) diagnostic work on BMFS using clinical data and samples from Victorian (and potentially national) patients.
  • Study of circulating tumour DNA analysis in AA and comparison with peripheral blood and bone marrow DNA testing.
  • Health economics analysis of different genomics approaches.
  • Analysis of data from the AA Registry:
    • Epidemiology of AA in Australia
    • Diagnostics, including cytogenetics
    • Prognosis: analysis of haemoglobin, white cell and platelet counts at presentation and associated with prognosis, infection rates and time to allogeneic transplantation
    • Therapies: number of therapies prior to stem cell transplantation, association between number of therapies and prognosis, identifying patients who should be transplanted earlier, supportive care requirements.
    • Biobanking: identifying patient samples on the AA Registry for further analysis, to provide an understanding of disease mechanisms.

Multi-Million Dollar Research Program to fight GVHD

Multi-Million Dollar Research Program to fight GVHD

Professor David Gottlieb

Chief Australian Investigators:  Professor Geoff Hill, Dr Siok Tey, Professor David Gottlieb (pictured), Professor David Ritchie, and Associate Professor David Curtis

Location: The Centre for Blood Transplant and Cell Therapy, National

Research Aim: To meet the urgent need for new approaches to better prevent and treat the potentially deadly graft versus host disease.

Graft versus host disease (GVHD) is one of the most significant contributors for transplant related deaths. In Australia, an alarming 50 to 70 per cent of stem cell transplant (SCT) recipients will develop GVHD.

GVHD occurs when donated cells (the graft) see your body cells (the host) as foreign and attack them. Chronic GVHD severely compromises a person’s quality of life, causing severe abdominal pain, mouth ulcers, muscle or joint pain and extreme damage to vital organs such as lungs and liver.

Twenty percent of stem cell transplant recipients will develop severe acute GVHD that does not respond to conventional treatment, resulting in more than half of these individuals dying.

The Centre for Blood Transplant and Cell Therapy (CBTCT) will receive $1 million over five years from the Leukaemia Foundation to invest in better outcomes for people living with GVHD. The Leukaemia Foundation is a major partner and the only non-government organisation to support the CBTCT project.

About the CBTCT

The CBTCT aims to improve the prevention and treatment of GVHD by:

  • Changing the clinical practice for treating transplant recipients who have GVHD.
  • Discovering biomarkers with diagnostic, prognostic and predictive power, to prevent GVHD.
  • Using novel agents, such as chimeric antigen receptor (CAR) T-cells therapy, immunomodulatory and immunotherapy agents and genetically modified T-cells, to reduce blood cancer relapse and improve patients’ survival.

“The potential from this research has been very promising in theory, and we are optimistic that we can replicate them into reality in the coming years,” Prof David Gottlieb said.

To do so, the CBTCT project will include prevention studies that will investigate new therapies for GVHD and relapse. The studies will comprise of a pilot study, a Phase I, a Phase I/II, and two Phase III randomised trials. There also are treatment studies with three early Phase I, a Phase I/II, and a Phase III trial.

To ensure patients have equitable access to the research and trials conducted by the CBTCT, the Leukaemia Foundation also will provide some additional funding for eligible patients for their transport and accommodation needs.

This research and clinical trials will be conducted at the BMT/SCT units in Brisbane (Royal Brisbane and Women’s Hospital), Sydney (Westmead Hospital) and Melbourne (Royal Melbourne Hospital, The Alfred Hospital), with involvement from SCT units in Adelaide and Perth.

The CBTCT project is led by world leaders in transplant research. Chief Australian Investigators include Professor David Gottlieb, Professor Geoff Hill, Dr Siok Tey, Professor David Ritchie, and Associate Professor David Curtis. International Chief Investigators on the team are Professor Bruce Blazar (University of Minnesota, US) and Professor James Ferrara (Icahn School of Medicine, Mount Sinai, US).

The CBTCT’s scientific partners are Queensland Institute of Medical Research, University of Sydney, University of Melbourne and Monash University in Australia, and the international centres are the University of Minnesota and Icahn Centre School of Medicine at Mount Sinai in New York, both in the US.

National Health and Medical Research Council CBTCT logo

New research breakthroughs

New research breakthroughs

Researchers such Dr Siok Tey are dedicated to driving rapid advancements in treatments, discovering new therapies, and launching innovative clinical trials.

Dr Siok Tey
Dr Siok Tey in the lab

Dr Tey is a leading Australian expert in bone marrow transplantation and cancer immunotherapy.

“I fell into research by accident; towards the end of my specialist training, I had a teenage patient with very problematic Hodgkin lymphoma,” said Dr Tey.

“Seeing how patients were struggling through the chemotherapy or radiotherapy treatment is what inspired me to enter the field of immunotherapy, where the immune system is used to kill cancer cells instead.

“I wanted to help make this promising field a therapeutic reality for our patients.”

“I was very fortunate the Leukaemia Foundation awarded me a PhD scholarship, enabling me to focus on my research training and develop my career as an academic clinician.”

Dr Tey is a senior research fellow at the QIMR Berghofer Medical Research Institute and a practising clinical haematologist at the Royal Brisbane and Women’s Hospital (RBWH).

Dr Tey’s current research focus is bone marrow transplantation and immunotherapy.

“Bone marrow transplantation is a type of immunotherapy where the transplanted donor cells are very good at killing leukaemia cells.

“Unfortunately, these cells can also damage other organs, causing graft-versus-host disease (GVHD).”

Dr Tey is currently part of part of a nationwide collaboration formed to tackle GVHD and improve bone marrow transplant outcomes.

Leukaemia Foundation has contributed $1million over five years to this effort which will have a huge impact for transplant recipients.

National Health and Medical Research Council CBTCT logo

Providing a home full of heart

Providing a home full of heart

Photo of the Nield family, sitting together in a large field
The Nield family at their farm on the Eyre Peninsula

The Nield family were overwhelmed by the kind and thoughtful care provided by the Leukaemia Foundation while seven-year-old son, Rocco, battled Hodgkin lymphoma (HL).

A farming and fishing fanatic, Rocco’s life on the Nield’s family farm was a-buzz with the best days spent out on the header reaping wheat with Dad. Always full of energy and never showing any signs of being unwell, the family were rocked by Rocco’s first HL diagnosis three years ago.

Our son Rocco’s 6th birthday we will never forget. My husband Joel and I sat stunned watching him in his hospital bed. Just the day before they put a port under his skin so they could easily administer the chemotherapy drugs; he was still sore from this. ‘Chemotherapy for your 6th birthday’ I thought to myself. The hospital staff came into his room and sang him ‘Happy Birthday’. It all seemed so surreal. I knew this was a day we would always reflect on.

–Emma Nield, mum of lymphoma-survivor Rocco

“At football one weekend a friend pointed out Rocco’s chin looked slightly bigger on one side,” explains Emma, Rocco’s mum. “This lump on his throat started growing rapidly and Rocco was diagnosed with HL in the following weeks.

Rocco Nield playing outside
Seven-year-old son Rocco bravely battled Hodgkins lymphoma

The growth was able to be removed completely and life went on for the family with Rocco being closely monitored.Devastatingly, late last year the cancer returned and the family had to leave their home so Rocco could receive life-saving treatment in a capital city.

“We were told we would need to be in Adelaide, six hours drive from our home, for four months while Rocco had chemotherapy.”

Emma wasn’t having much luck finding a suitable place to stay when she came across the Leukaemia Foundation online, offering accommodation for families going through a blood cancer diagnosis.

Rocco Nield in the hospital after chemo
Rocco on his last day of chemo

They were provided with a three-bedroom unit at the Bridgestone Australia Leukaemia Foundation Village, perfect for the family, with younger sisters, Capri, 5, and Maisie, 2 in tow.
“We were provided with such a beautiful unit just a short 10-minute drive from the hospital, making life so much easier,” said Emma.

“The village is gated so we felt safe and my parents could also stay to help look after the girls while Rocco, my husband Joel and I went back and forth to the hospital.

“I was breastfeeding our baby and really needed my girls to be with us, it would’ve been so horrible for all of us to be separated during that time.”

One of Emma’s main concerns was keeping the kids occupied while staying at the village as they were used to having the run of the farm.

“But the village had a lovely playground, a playroom, library and gym to keep our young kids entertained,” said Emma.

“We were also able to use their office space for tutoring for Rocco and the staff often integrated us into office activities.

Rocco planting veggies outside the accommodation centre
Rocco planted vegetables at the unit for the next family to enjoy

“We had Halloween with the staff and helped them decorate their Christmas tree  – they were just so wonderful throughout our entire stay and made us feel at home.”
The family also appreciated the village staff’s understanding of Rocco’s change in behaviour due to aggressive treatment.

“Steroid treatment, many anaesthetics and chemotherapy sometimes changed our happy boy into aggressive and violent,” explains Emma.

“The staff never made us feel bad about this, they gave us all the time we needed in the village and supported us whenever they could.

“We also loved meeting the other families in the village who were a great source of comfort, support and friendship in what would’ve been an otherwise isolating time.”

The Nields were able to return home just before Christmas with the family recently receiving the news that Rocco is cancer-free and in remission.
“Rocco is doing really well now, free of his cancer and back at school,” said Emma. “He will continue to have checkups every three months in Adelaide.”

“The Leukaemia Foundation has also provided information about lymphoma including a book for children that we were able to share with Rocco’s school to understand what he’s been through.

“We will be forever grateful for the amazing support and real friendship we were shown in the village – we couldn’t have made it through without it.”

Nield family at their farm
The Nield family at their farm on the Eyre Peninsular