Leukaemia Foundation FINDING HAPPINESS IN A WORLD OF FEAR

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1 Leukaemia Foundation June 2016 leukaemiaqld.org.au QUEENSLAND Thanks to the generosity of our supporters, we are able to offer free city accommodation to regional, rural and remote blood cancer patients. This has been a critical part of our work for 40 years and Queenslanders like Brendan Hodda and his family are the reason why. FINDING HAPPINESS IN A WORLD OF FEAR Photo courtesy of Bambi Not only was Brendan facing the biggest health challenge of his life, he also had to leave his family, work and friends to commence treatment in an unfamiliar city hundreds of kilometres away. The Rockhampton local was diagnosed with acute myeloid leukaemia (AML) last September just three days before his 40th birthday. Within half an hour of my diagnosis I was waiting at Rockhampton Hospital for the Royal Flying Doctors transfer to the Wesley Hospital in Brisbane, Brendan explained. Our lives were put on hold indefinitely with no idea when we could return home. I had my first chemo treatment on my birthday. Brendan s wife, Roxanne, reflects on that time saying she was filled with fear when they were first given the diagnosis. There are no words to describe what it was like to get that phone call from our family GP, said Roxanne. Then when Brendan relapsed 17 days after his first round of chemo, the doctor told us Brendan would need a bone marrow transplant to survive. Knowing they would now be staying in Brisbane long-term, the Hoddas needed to find more suitable accommodation where their family could be together. At the beginning I stayed in a unit next to the hospital. Brendan was just so sick and I couldn t bear to be more than five minutes away from him, explains Roxanne. THE HODDA FAMILY

2 RESEARCH HIGHLIGHTS THE COSTS OF RELOCATING FOR CANCER TREATMENT The heavy costs associated with relocating to the city for blood cancer treatment have been revealed in new research funded with the help of your generous support. Associate Professor Pam McGrath, from the Centre for Community Science at Griffith University, said the financial burden of getting to treatment was not well-known and was especially critical for regional and rural patients who have to travel to Brisbane or Townsville for specialist care. For many, there is considerable stress in relation to the multiple bills and escalating costs during the time of relocation for diagnosis and treatment, Dr McGrath said. Dr McGrath said the Queensland Government s Patient Travel Subsidy Scheme was only a subsidy and not intended to cover all the costs associated with relocation. Patients are faced with further costs associated with diagnosis and treatment and it is these out-of-pocket expenses that can create quite a financial burden, she said. Depending on someone s circumstances, the return travel to hospital from their regional or rural home can involve expenses including the cost of emergency flights, taxi or train fares to and from the airport, car parking at the departure airport, bus or taxi fares to and from the airport and accommodation in the city, and, at times, the costs associated with administrative problems. Dr McGrath said the situation was exacerbated by the requirement for routine follow-ups throughout the patient s life, which can involve regular ongoing return visits to city hospitals. The research, Out of pocket costs during relocation for specialist treatment for haematological malignancies, has been published in the Supportive Care in Cancer journal. Our CEO, Bill Petch, said Dr McGrath s research findings are valuable because they confirm that providing accommodation is a vital part of helping someone beat their blood cancer, as well as in identifying areas where we can increase support for patients in ways that will improve their quality of life. Donations from our supporters enabled us to distribute $127,000 in financial assistance to Queensland families as well as provide free accommodation that saved patients and families more than $4 million. Our free transport also helped nearly 9,000 people get to hospital from our accommodation villages. Dr McGrath s research will help us continue to improve the way we support families, no matter where they live, and reduce some of the stresses that come with a diagnosis so they can concentrate fully on getting well again. After Brendan s second treatment, a Leukaemia Foundation Support Services Coordinator, Maryanne Skarparis, encouraged them to make the move to the Foundation s ESA Village at Dutton Park. Maryanne explained the unit at ESA Village would be completely freeof-charge and would provide free transport to and from the hospital. She said we would be with other families going through the same thing, said Roxanne. I was hesitant at first but now I couldn t imagine doing it any other way. We have received incredible support from the Leukaemia Foundation and from the other families we met, who have become lifelong friends. After staying in Rockhampton with their aunt for the last term of school, the couple s two children, seven-year-old Matilda and Darcy, aged four, joined them at ESA Village. It was so important and special for our family to be together again. The kids have done such a good job of coping with the terrible turn our life took and at making the village their new home. We have made some great friends here and spend many afternoons having fun together. I didn t expect that amongst the sadness and fear we could find a sense of community and happiness. Brendan received his life-saving bone marrow transplant on Christmas Eve and was released from hospital in the second week of January. He has been making a steady recovery since then, taking it one day at a time. Now several months later, the Hoddas have left ESA to travel more than 600km back home. We will always be so grateful for the home we found at ESA Village and the wonderful people who supported us when we needed it most. Thank you to the Leukaemia Foundation.

3 Professor Maher Gandhi s position at The University of Queensland Diamantina Institute is funded by our generous supporters. IMPROVING LYMPHOMA OUTCOMES WITH PERSONAL TOUCH A recent review of the latest medical advances for people with Hodgkin lymphoma has highlighted how personalised treatment is improving outcomes for patients. Professor Maher Gandhi, the Leukaemia Foundation Chair in Blood Cancer Research at The University of Queensland s Diamantina Institute, said the new approaches were aimed at minimising toxicity while maximising response. He said while the majority of patients with Hodgkin lymphoma responded well to current treatments, a significant minority relapsed and were harder to treat. New targeted therapies are producing excellent results in clinical trials, Professor Gandhi said. Not only do they provide additional treatment options for those with relapsed disease, they may also have potential in front-line therapy. The review highlighted the effectiveness of antibody brentuximab vedotin, which has been tested as both a single drug and in combination with other drugs among relapsed patients and those resistant to treatment. The authors who, also included Professor Mark Hertzberg and Dr Suzanne Arulogun, said Nivolumab and Pembrolizumab, currently used to treat other cancers, had shown outstanding results when used as single agents in heavily pre-treated Hodgkin lymphoma patients. Professor Gandhi said individualising and adapting a patient s treatment based on an interim PET/CT scan was also emerging as an important strategy. Further work is needed to explore clinical and biological factors associated with improved outcomes, he said. The review was published in the Australian and New Zealand Journal of Medicine. BETTER CARE AHEAD WITH NURSE AWARD We are thrilled to announce Anita Cox as this year s winner of the Adem Crosby Haematology Nursing Award. Anita is the Youth Cancer Nurse Consultant at the Cancer and Blood Disorders Clinic at the Gold Coast University Hospital. The $5,000 award, jointly funded by the Leukaemia Foundation and Crosby family through Team Adem, helps to improve the care given to patients being treated in the haematology and oncology setting. It provides an opportunity for a registered nurse to undertake further clinical training or attend a national or international conference. I m really looking forward to further extending my knowledge in caring for young people with cancer, as well as networking with international experts and colleagues, Anita said. Having a specialist interest in youth cancer care, I hope to gain new ideas for service development, particularly in the areas of fertility preservation and survivorship, which I feel are areas that could be enhanced to improve patient care. The award is in memory of Sunshine Coast schoolboy Adem Crosby who began his philanthropic support when diagnosed with blood cancer in Before he passed away in 2013, Adem had planned to study nursing for haematology patients so his family created the award to help others. Previous recipients of the award Cassandra Dickens and Elise Button brought back specialist knowledge and a valuable network of international contacts having respectively attended the 5th Emirates Haematology Conference in Dubai and the Blood and Marrow Transplantation Annual Congress in Spain. OUR DIRECTOR OF SUPPORT SERVICES BARBIE HARTIGAN WITH NURSING AWARD WINNER ANITA COX

4 BEATING BLOOD CANCERS TOGETHER Families impacted by blood cancer can look forward to better outcomes and support after members of the Leukaemia Foundation of Australia and Leukaemia Foundation of Queensland recently endorsed a joint Board proposal to unify the two organisations. The charity will retain the name Leukaemia Foundation but a single Board and leadership team will develop innovative new strategies focused on beating blood cancers to improve survival time and quality of life. Both charities have together already invested millions of dollars in lifesaving blood cancer research since the Leukaemia Foundation was founded in Queensland in Thousands of families impacted by blood cancers have been provided with free accommodation near hospitals, transport, information, and financial and emotional support. BEVERLEY MIROLO OAM AND BILL PETCH But Beverley Mirolo, Chairman of the new Leukaemia Foundation Board, said today s organisation faces a very different set of challenges to 40 years ago. The operating environment for charities has changed. There is more competition for government, corporate and public funds than ever before and yet more people now 35 Australians every day are being diagnosed, she said. BENDING BACKWARDS TO HELP We are privileged to work with a wonderful group of hard working and talented volunteers and yoga instructor and relaxation therapist Craig Smith is no exception. A united Leukaemia Foundation will mean better advocacy for the rights of people affected by blood cancers, significant ongoing savings that can be reinvested into more research and patient support, prioritisation of research which will give patients greater access to better treatments, and improved fundraising opportunities to deliver greater financial stability, she said. Craig, who has now worked with the Leukaemia Foundation for nine years, generously gives up his time to run a weekly support program, Relax, Breathe and Release. A blood cancer diagnosis and treatment is obviously a very stressful time both physically and emotionally, not only for the patient but also for their carers, Craig explained. Relax, Breathe and Release provides relaxation, breathing techniques and gentle stretches that can be used to help relieve tension, head and neck ache, back pain and also tiredness by helping you to sleep. The Relax, Breathe and Release program is held at our ESA Village in Dutton Park, Brisbane, each Wednesday at noon. For more information phone or qldsupport@leukaemia.org.au. OPEN YOUR DOOR TO A CURE 18 JUNE 1 JULY Please give generously when a collector comes to your door or donate at leukaemiaqld.org.au. Your support will help us find better treatments for the 35 Australians diagnosed every day with a blood cancer.

5 REBUILDING HERSTON VILLAGE WITH LOVE, SWEAT AND TEARS Our oldest patient accommodation facility, Herston Village, will be receiving a much-needed refurbishment this year to ensure regional and rural families have somewhere safe to stay in the city during blood cancer treatment. The 13 one and two-bedroom units in Brisbane have been a crucial part of supporting patients since 1989, and since then the village has been in constant use. To ensure we can continue to provide a safe and comfortable home-away-fromhome within walking distance of hospital, it is vital we carry out a major refurbishment. The Herston Village upgrade will cost $2.25 million to complete. Thanks to the support of the Australian Government and other generous donors more than $1,005,900 has already been raised, however we still have a long way to go to raise the additional $1,244,100 needed to complete this upgrade. Our Herston Village Support Services Coordinator, Sheila Deuchars, said the refurbishment will make a huge difference to families impacted by blood cancers like lymphoma, leukaemia and myeloma. I know how grateful people are when they come to Herston Village at such a difficult time and receive free accommodation and emotional support, Sheila said. But if we re to continue to offer modern, comfortable accommodation for many years to come the facilities are in urgent need of a major refurbishment. PATIENTS AND FAMILIES SETTLED IN NEW ACCOMMODATION ARTIST S IMPRESSIONS OF THE REFURBISHED HERSTON VILLAGE In the last three decades over 1700 patients and their families have stayed at Herston Village. While most patients stayed an average of four months, some needed to stay for more than a year. You can help to raise the money to complete our urgent Herston Village refurbishment, by contacting Lindsay Stokes on or lstokes@leukaemia.org.au. The 14 units that make up our newest patient accommodation centre, the Village Green Apartments, are already full, providing a home for many families who have needed to move to Brisbane for life-saving blood cancer treatment. Thanks to our generous supporters whose donations allowed us to furnish and fit-out the units, families from rural and regional areas are enjoying a clean and safe home-away-fromhome right across the road from Royal Brisbane and Women s Hospital. JENNY HOLLAND (MIDDLE) WITH SUPPORT SERVICES STAFF SHEILA DEUCHARS AND LOUISE KEATING AT THE VILLAGE GREEN. JENNY, FROM GLADSTONE, IS STAYING AT THE VILLAGE WITH HER 19-YEAR-OLD SON BRENT WHILE HE HAS BLOOD CANCER TREATMENT. We already have four accommodation villages in Brisbane and Townsville but increased building costs and a lack of suitable land close to treating centres means we cannot continue to meet demand by building purposebuilt villages. Purchasing the Village Green Apartments in Bowen Hills offered an innovative yet simple model that provided a cost-effective way of helping more Queenslanders. Our CEO Bill Petch said the project shows our continuing commitment to providing no cost, first-class accommodation to regional patients and their families. To see all these units filled with patients who are now within a stone s throw of a hospital providing life-saving treatment is testament to the hard work and generosity of the community, Mr Petch said. The Village Green Apartments put doctors and nurses on the doorstep and the importance of that cannot be overstated. If you have any accommodation enquiries, visit leukaemiaqld.org.au or call

6 BEATING BLOOD CANCERS ONE STEP AT A TIME Every step of our 55for5 hike is one more step towards helping the 35 Australians diagnosed every day with blood cancers. Visit 55for5.org.au today if you re up for the challenge of a 55km walk through the beautiful Sunshine Coast Hinterland (20-21 August) to raise funds to beat blood cancers. WHAT S ON FOR PATIENTS AND CARERS 2016 EVENT LOCATION JUNE Amyloidosis Lunch Bereaved Parent Weekend SUNSHINE COAST Carers Coffee, Cake and Chat Paediatric Parent Coffee, Cake and Chat Patient Information Seminar Blood Cancer Coffee, Cake and Chat MACKAY JULY Carers Coffee, Cake and Chat TOWNSVILLE Blood Cancer Coffee, Cake and Chat GOLD COAST, ATHERTON MDS Coffee, Cake and Chat Grief Brunch 20/30 Chat Patient Information Seminar TOWNSVILLE AUGUST Carers Coffee, Cake and Chat Caring for the Carer (week 1-4) GOLD COAST MPN Coffee, Cake and Chat CLL Coffee, Cake and Chat CML Coffee, Cake and Chat Myeloma Coffee, Cake and Chat Lymphoma Coffee, Cake and Chat Paediatric Parent Coffee, Cake and Chat TOWNSVILLE,, GOLD COAST, Patient Information Seminar Blood Cancer Coffee, Cake and Chat MACKAY, INNISFAIL SEPTEMBER Amyloidosis Lunch Carers Coffee, Cake and Chat TOWNSVILLE Blood Cancer Coffee, Cake and Chat GOLD COAST Grief Brunch, GOLD COAST, TOWNSVILLE It s all about me! (2-part workshop) WM Coffee, Cake and Chat World Lymphoma Awareness Day, GOLD COAST, TOWNSVILLE WILL YOU? A gift in your Will to the Leukaemia Foundation is a simple but vital way of ensuring our important work continues into the future, without impacting your lifestyle today. Our friends at McCullough Robertson have been long-term supporters of the Leukaemia Foundation offering valuable pro bono support. Over the next few issues, they will be helping to answer your questions about Wills and leaving a gift to charity. I m not a wealthy person. Do I even need a Will? Whether you have few possessions or many, everybody needs a Will to make sure they leave their assets to the people or charities they want to receive the gift, and in the proportions they determine. If you don t have a Will, there is a legal formula about how assets are distributed that may not appropriately reflect your wishes. Wills are not just for old or wealthy people as soon as you have assets which you value, you should make a Will. Do you have questions of your own about leaving a gift in your Will? Contact our Donor Liaison Officer Emma Quigley on or equigley@leukaemia.org.au leukaemiaqld.org.au DOWNLOAD Would you like to receive this newsletter or invitations to our seminars via ? Phone or visit leukaemiaqld.org.au