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Accommodation project takes step forward to support people with blood cancer

Accommodation project takes step forward to support people with blood cancer

Illustration of proposed Murdoch Health & Knowledge Precinct
Illustration of proposed Murdoch Health & Knowledge Precinct

It’s a promising time for Western Australians living with blood cancer.

The Leukaemia Foundation team is working closely with developers Fini Group to support the outcomes of the Murdoch Health & Knowledge Precinct in Perth, Western Australia.

Aiming to bring this revolutionary share-building space to life, the project will centralise the treatment experience and relocation options for people with blood cancer.

The precinct will include short-stay accommodation, residential apartments, aged care services and allied health services (and much more!), positioned between two major hospitals.

It will also be the home to charities and not-for-profits, driving opportunities for collaborative and innovative services for the wider community.

You’re Caring for Carers

You’re Caring for Carers

Being a carer for a loved one who has a blood cancer can be rewarding, stressful, overwhelming and isolating.

Two hands holding a small red heart ornament

Across Australia, more than two million people regularly care for a spouse, partner, brother, sister, parent, friend or child. Their care and support vary, from a couple of hours a day or week, to around the clock.

With the help of our kind supporters, the Leukaemia Foundation has developed an e-learning course, Caring for the Carer to meet the needs of those in this important role. Blood Cancer Support Coordinators have designed and this program especially for carers of people living with a blood cancer.

Not only will completing this online course help carers to recognise and support their emotional and practical needs, it also provides access to all the services, support and guidance that is available to them.

You can explore our Caring for the Carer course here.

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.  

You’re there for teenagers with blood cancer through every setback and every victory

You’re there for teenagers with blood cancer through every setback and every victory

Siobhan Hoy and her mum Sally
Siobhan Hoy and her mum Sally

After suffering a devastating relapse last year, Siobhan Hoy knew her Leukaemia Foundation family would be there for her again.

Siobhan was just 14 years old when she was first diagnosed with blood cancer in 2015.

“I was a fit, healthy teenager with a few bad bruises and a couple of bloody noses,” said the now 19-year-old. “A blood test and one phone call later and my life changed completely.”

Siobhan and her family stayed at a Leukaemia Foundation Patient Accommodation Village while she received life-saving treatment.

“My first diagnosis was really hard. I didn’t want to talk to anyone and felt so embarrassed and ashamed of my illness,” remembers Siobhan.

“I wouldn’t leave the room for anything until my mum convinced me one day to go down to see the Leukaemia Foundation support staff in the office.

“I was introduced to Maryanne, a Blood Cancer Support Coordinator you help to fund, and we just clicked straight away.

“There was no shame in what I was telling her. We would talk about all my teenage issues and she would laugh and reassure me through it all.”

When Siobhan relapsed in 2019, she felt assured by her first experience with the Leukaemia Foundation, knowing she would have access to all the supportive care she needed.

“I walked in that first day and said to Maree at the front desk: ‘I’m back, buddy, let’s do this!’,” laughs Siobhan.

“Maree and my mum, Sally, also became really great friends. They would go walking and work out in the gym together.

“That was really important for my mum’s mental health as well because being a carer is not easy.”

Siobhan is grateful to you for the family she built while staying at the village and keeps in regular contact with Maree and Maryanne.

“They see you at your best and worst, experiencing every setback and every victory together.

“I consider them my lifelong friends and actually really miss them now as happy as I am to be getting on with my life.”

Siobhan is now in remission – and we miss her, too!

You helped Jenny navigate her diagnosis

You helped Jenny navigate her diagnosis

Jenny and her son
Jenny with her son, Joshua who flew in from Western Australia to Queensland to be one of her carers.

Because of kind supporters including you, Jenny von Pein connected with the vital information she needed to find her best treatment and take on her blood cancer with confidence. 

Jenny was first diagnosed with a long-developing blood cancer called chronic leukaemia after a routine blood test.

“I got in contact with Sheila, a Leukaemia Foundation Blood Cancer Coordinator,” explains the 57-year-old. “I needed to go where the most valid knowledge was and, if necessary, where the clinical trials were.

“Sheila was excellent at talking me through the terminology, what to expect with the treatment and what it means to have a chronic leukaemia.

Having to travel four hours from her hometown for treatment, Shelia also helped Jenny to access a patient travel subsidy scheme and find accommodation.

“You don’t know what you don’t know. Shelia was just excellent; she was in constant contact with me throughout the whole journey.

“She has been a real leveler, easing my anxiety over the travel to treatment and through chemotherapy.

“We’ve already started to chat about whether I’ll be well enough to go back to work.

“I now know what I’m entitled to.”

Jenny is focusing on her recovery with her medical team monitoring her condition closely with weekly blood tests.

“It’s so important to understand your illness and talk to the Leukaemia Foundation to get direction and assistance on where you’re heading next with your disease,” said Jenny.

Jenny was recently told she is blood cancer-free and is feeling grateful for all the support she received to find the right treatment pathway for her.

You’re putting the human into blood cancer treatment

You’re putting the human into blood cancer treatment

Sherma Beasley
 Your kindness connected Sherma Beasley (pictured) with a lifeline of support

After being diagnosed with an aggressive blood cancer, Sherma Beasley was one of the many Australians left without access to the supportive care they need.   

“I had absolutely no idea what I was in for when I turned up to my first chemotherapy appointment,” said the 57-year-old.    

“I saw a different doctor nearly every time I was there and wasn’t told much about anything.”     

Feeling isolated and unsure, Sherma wasn’t getting the psychosocial, practical, nutritional or financial supportive care she desperately needed – nor did she know how to find it.     

Luckily, it was at that point your kindness reached out to change Sherma’s life forever. With your support Sherma was able to call on one of our Blood Cancer Support Coordinators, Jacqui.  

“Jacqui has been wonderful through all of this,” said Sherma. “She will always have a proper chat, is a great listener and doesn’t treat me like just another person to check off the list.   

“She gave me real encouragement and support, telling me what services I could access to make everything easier.   

“She fixed up my transport to the hospital, provided food vouchers and made sure I was asking my doctors to sort out the side effects of my treatment.”   

When we spoke to her Sherma had successfully completed six cycles of chemotherapy and was awaiting further blood tests.  

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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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

Volunteering helped me find my new love!

Volunteering helped me find my new love!

Volunteers Ian and Lyn stand beside a Leukaemia Foundation transport car
Leukaemia Foundation volunteer drivers Ian and Lyn

When Ian Pyman started volunteering at the Leukaemia Foundation nearly eight years ago, he never thought it would lead him to find his new partner.

“After I’d been driving for a year, Deb, the Leukaemia Foundation Transport Coordinator back then, pulled me aside and said, ‘I’ve got someone for you to meet’.”

“Meanwhile at the same time, Deb said the same thing to her friend Lyn. This went on for about 12 months, we were both not ready. In the end we both basically relented at the same time and I said to Deb, ‘Oh for goodness sake, give me her phone number, get off my back.’ ”

Ian and Lyn met up for coffee and nearly closed the café down: “We got there about 2pm; at half past 5 the café staff were wishing we’d shoot through as they wanted to lock up!”

Ian even got Lyn onto volunteering for the Leukaemia Foundation once she had retired, suggesting she donate her time as a driver.

“I said, ‘Why not? The more the merrier!’ ”

Lyn’s now been driving for over two and a half years, often on the same days as Ian.

Ian and Lyn are part of a nation-wide team of Leukaemia Foundation volunteer drivers, transporting people living with blood cancer to vital hospital and medical appointments.

“It takes a lot of pressure off people – trying to get a car park at the hospital is a massive stress!”

Volunteers like Ian and Lyn have helped to keep this free Leukaemia Foundation service running for more than 20 years.

Our patient transport service relieves the financial burden of car parking costs, as well as providing a safe way to help people get to appointments if they’re too unwell to drive or take other transport.

Ian had first noticed the Leukaemia Foundation transport service cars nearly ten years ago, during hospital visits for his late wife Carol.

“I’d seen the cars at the hospital but we didn’t use them at that stage, as I’d retired so I could take her in and out of hospital,” Ian said.

Carol was in treatment for acute myeloid leukaemia, something Ian said “Hit us out of the blue”.

“It just blew our world apart,” he said.

“After she passed away I thought, ‘Right, I’ve got to do something with my life, I can’t sit around doing nothing’,” he said.

“I was driving and one of the Leukaemia Foundation cars pulled up beside me and I thought, ‘There’s one of those cars again – that’s it.’ ”

Ian sums up the enjoyment of being a volunteer driver simply: “It’s about helping people get to where they need to go safely.”

“And you can make people’s day a bit better by having a chuckle about something!”

The Leukaemia Foundation transport program is proudly supported by Bridgestone Select and Bridgestone Service Centres.

Learn more about our volunteering program

Make a difference now

Burden on rural patients lightened

Burden lightened for rural patients needing life-saving treatment

The Leukaemia Foundation’s patient accommodation facilities in Townsville will continue to be a home away from home for blood cancer patients from rural and remote Queensland, following a sizable donation from the Freemasons.

As Aramac Masonic Lodge, some 550km away closed its doors for the last time in 2019, they had one final wish – to help support outback cancer patients and their families.

So together with Hand Heart Pocket the Charity of Freemasons Queensland, the Lodge recently donated $60,000 towards the Queensland Freemasons Village, which offers accommodation and support for patients and their families while they undergo treatment at Townsville Hospital.

Freemason David Gray, formally of Aramac Masonic Lodge, said he was excited to make the journey up to Townsville today, to celebrate the donation.

“$60,000 could provide over 750 nights of accommodation, which act as a home-away-from-home for families during blood cancer treatment,” he said.

“People with blood cancer from our own community in Central West Queensland have stayed at the Village, so we know how having a place to stay made an immense difference for them,” he said.

Leukaemia Foundation CEO Bill Petch said last financial year the Leukaemia Foundation provided 5,213 nights of accommodation to 125 families at Freemasons Village – with 72 of these families staying more than once during their blood cancer journey.

“Every day another 41 Australians are diagnosed with a blood cancer, and unfortunately most regional and rural Australians who are diagnosed will have to leave their home, work and local community behind to relocate to a major city for their treatment,” he said.

“Providing this accommodation service in Townsville is the Leukaemia Foundation’s way of giving blood cancer patients living in regional and rural areas a chance to access life-saving treatment with their loved ones by their side, free of charge.

“The Leukaemia Foundation is deeply grateful for this incredibly generous donation which will have a huge and positive impact on Queensland families in their greatest time of need during their blood cancer journey.”

Hand Heart Pocket Chief Executive Officer Gary Mark was appreciative of Aramac Lodge for bringing this initiative to the organisation’s attention so that together a bigger difference could be made, through their Grassroots Grants program.

“Our focus is to alleviate suffering and to empower people to lead better lives, which is why this initiative appealed to us,” Gary said.

“At a grassroots level, we recognise the importance of ensuring health services remain accessible to regional and remote Queenslanders.”

About Hand Heart Pocket

As an independent charity founded by the Freemasons of Queensland, Hand Heart Pocket helps in areas of state-wide and local need that have limited access to other funding. We work with other charities to identify and fund initiatives that have real, life-changing potential. We also collaborate with Freemason Lodges across Queensland and help individuals in times of extreme need to get them back on their feet. We use our funds wisely to give a hand up and to build potential.

For more information about Hand Heart Pocket, visit www.handheartpocket.org.au 

Subscribe to receive the Leukaemia Foundation’s news and updates here.