Eden Robertson, PhD candidate at the Behavioural Sciences Unit, has led the development of a decision aid for pediatric oncology clinical trial enrolment, called ‘Delta’.
 
Ms Robertson has recently published the development process of Delta and user testing results in JMIR Research Protocols.
 
The main of aim of Delta is to improve clinical trial knowledge and facilitate treatment discussions and shared decision making between families and healthcare professionals. Delta incorporates general content about clinical trials (eg, what are clinical trials, how do clinical trials work), the specific clinical trial information sheet, and a unique decision-making exercise.

The development of Delta was supported by a steering committee, and followed the principles of Agile.  Agile focuses on collaborations between developers and stakeholders, flexible methodology, and the ability to respond quickly to change through multiple iterations. Using Agile allowed for the development of a high-quality and high-value project within the constraints of cost, schedule, and scope. 
 
To assess the usability of Delta, we incorporated eye-tracking analyses to determine where participants’ gaze lingered, their length of gaze, and readability (ie, scanning, reading, or rereading of content). Seven parents and six healthcare professionals participated in user testing.
 
User testing revealed that, overall, both HCPs and parents found Delta to be acceptable and useful. 
 
“After this tool, we would really start talking with each other. The exercise is great—it becomes a tool at that point for more people to really engage.” [Mother of a 13-year-old boy with osteosarcoma]
 
One particularly interesting finding was that few participants saw the side panel for instructions on how to use the decision-making exercise. This indicates that the instructions needed to be more obvious.

You can read more about the Delta study here. You can also access this full manuscript here.

DOI: 10.2196/resprot.9258

The Behavioural Sciences Unit is Proudly Supported by the Kids Cancer Foundation.

Brittany McGill, clinical psychologist and PhD candidate at the Behavioural Sciences Unit, along with authors from UNSW Sydney, Princes of Wales Hospital, the Garvan Institute of Medical Research and Boston Children’s Hospital, has recently published a systematic review in Clinical Genetics that addresses this question.

With advances in genetic technologies, children and young people are increasingly likely to be exposed to genetic information about inherited health risks that is relevant to them, and to the health of their family. We aimed to summarise the literature, across illnesses, to determine what children and young people understand about inheritance and their attitudes towards genetic testing.

We screened 1815 articles to identify 20 studies representing the perspectives of 1811 children and young people between the ages of 6 and 21 years.  
Our results showed that:

• Healthy children and young people demonstrated a basic understanding that disease predisposition can be inherited within families;
• Children and young people affected by, or at risk of, genetic conditions inferred their risk from family narratives and/or by observing patterns of illness in their family;
• Misunderstandings of important genetic concepts (e.g. what it means to be a ‘carrier’) were evident in some groups;
• Children and young people expressed a willingness to undertake personal genetic testing – in both personally-relevant and hypothetical scenarios; BUT
• They expressed concerns about a variety of relevant issues, including the possible negative psychological and social impacts of receiving genetic test results.

Childhood and adolescence encompasses complex and dynamic developmental stages. Young patients and those at risk of genetic conditions require developmentally-informed resources and support to navigate the unique landscape of their condition.  

You can access the published systematic review here: https://onlinelibrary.wiley.com/doi/abs/10.1111/cge.13253


https://doi.org/10.1111/cge.13253

The Behavioural Sciences Unit is Proudly Supported by the Kids with Cancer Foundation Australia

Please describe your education and training
I completed a Bachelor of Education (Primary) (Hons, Class 1) at Charles Sturt University, graduating in 2009. Over the course of my degree and concurrent practicums, I developed an interest in the types of inclusive practices that could best support students with special needs in mainstream schools. As a result, I decided to further explore this by applying for the honours program, culminating in a dissertation titled, “It’s the essence of education”: Exploring the inclusive practices of effective educators. The study looked at the effective inclusive practices being employed in mainstream classrooms through interviews and observations with primary and high school teachers.

After completion of my degree, I worked at Charles Sturt University (CSU), Wagga Wagga for six years as a research assistant and, more recently, as a research and events coordinator for CSU’s Digital Learning Innovation Laboratory: u!magine. During my time at CSU, I worked for multiple researchers, mainly in areas of education and information studies. When it comes to research, I would describe myself as qualitatively driven: I really enjoy interviewing participants as well as observing the practice and/or behaviours of individuals. I’m intrigued by the ‘human element’ and often find myself wanting to make sense of the world in this way.
I also have experience working as an administrative assistant and primary school teacher. Outside of work hours, I have a passion for the performing arts and enjoy singing, dancing and aerial yoga.

What is your current role?
I am working as Research Officer in the Mental Health Team of the Behavioural Sciences Unit. I’m primarily working on the Cascade and Recapture Life studies. These studies are looking at ways in which to best support young people and their families after cancer treatment specifically through online support groups led by a psychologist. Both the Cascade and Recapture Life projects will soon be moving into their implementation phase. I’m looking forward to working with the research team on this exciting and important application of the study to the wider community through support organisations.

What are the ‘best’ parts of your current role?
The BSU team has warmly welcomed me and I’m really enjoying working with and getting to know my colleagues. We are a very friendly, knowledgeable and fun group. In addition to this, it’s a nice feeling knowing that the research I’m involved in and the work that I’m doing is in support of a larger goal to improve people’s lives after cancer. I feel that I’m part of something meaningful, where the research has an important and significant real life application and impact.

What are the most challenging parts of your current role?
Coming from an education background, I would say that it is a bit of a transition to the health/psychology discipline. There are many new terms, concepts and ideas. However, I’ve enjoyed learning more about the field and working in a team where research is aiming to make a real and positive impact on the lives of those that have been affected by cancer.

Where do you see yourself in five years’ time?
That is a very tricky question! I hope that wherever I am, I'm doing something worthwhile plus still learning and developing my knowledge and skills – whether that be in research or another area if that is where life takes me.

What advice would you have for someone wanting to follow a similar path in terms of their study/career?
I think it’s important to think about what interests and drives you as a person, perhaps also something that you feel is contributing and making a difference to the world. When I began my education degree, I certainly never imagined that I would complete honours and end up in research, but I took opportunities as they came to me and was lucky to gain some valuable experience and skills that have led me to where I am now.

The Behavioural Sciences Unit is Proudly Supported by the Kids with Cancer Foundation.

What is your current role?
I am a Post-Doctoral Research Fellow within the Ethics and Genetics team of the Behavioural Sciences Unit. I am currently working on projects examining the psychosocial impact of childhood chronic illness on families.

What are the ‘best’ parts of your current role?
It is has been so inspiring and enjoyable to be part of a team of such talented researchers. I think the best part of the role is knowing that the research we complete will actually translate to improvements in quality of life for children with chronic illnesses and their families.

Please describe your education and training.
I completed my PhD in psychology in 2017 at Monash University. My PhD examined adolescent nonsuicidal self-injury and recovery from the perspectives of adolescents, parents and schools. I also worked with researchers at Cornell University and the University of Leuven to compare recovery from self-injury among Australian, Belgian and American young people.

After my PhD I worked at Rape and Domestic Violence Services, a non-profit which provides specialised, trauma-informed counselling to survivors of sexual and family violence and child abuse. In this role I worked on several research projects, including one which examined the emotional toll that working in the field of family violence has on service providers, known as vicarious traumatisation.

What are the most challenging parts of your current role?
In my role I have had to learn more about childhood chronic illness and genetic testing which has been challenging but mostly fascinating.

Where do you see yourself in five years’ time?
I’d like to still be working in the field of child and family health and wellbeing and conducting translational research to improve health outcomes for families.

What advice would you have for someone wanting to follow a similar path in terms of their study/career? 
Be open to new opportunities and challenges – when I was completing my PhD I didn’t think I would end up working in a medical setting but now I couldn’t imagine being anywhere else!

The Behavioural Sciences Unit is Proudly Supported by the Kids with Cancer Foundation.

Eden Robertson, PhD candidate at the Behavioural Sciences Unit, along with national and international collaborators, has recently published a systematic review in Patient Education and Counseling that aims to answer this question.   

Clinical trials are designed to test the safety and efficacy of new diagnostic tests or treatments. While they are necessary to improve outcomes childhood cancer, many families find deciding whether to enrol in a clinical trial difficult.

Shared decision-making is perhaps the most ethical approach for clinical trial enrolment decisions considering that usually there is no single ‘correct’ decision. In childhood cancer, shared decision-making is typically between parents and healthcare professionals. In some cases it can also extend to include the patient.

As no interventions have yet been formally evaluated to determine how best to facilitate shared decision-making in paediatric oncology clinical trials, we undertook a systematic review to identify any recommendations published in the literature.

We reviewed 924 articles to reveal 17 studies that recommended at least one strategy to facilitate shared decision-making in paediatric oncology clinical trials.

Our results highlight that:

• decision-making about clinical trials is a process, not just a single decision;
• each family (and family-member) has personal preferences for how much they want to be involved in  decisions and how much information they receive, and that this can change over time;
• information needs to be clear and jargon-free;
• healthcare professionals should encourage parents and young patients to ask questions;  and
• families need more support to help them make decisions that best align with their values.

This review has led to the development of ‘Delta’, a decision aid for families who are considering enrolling in a clinical trial. You can read more about the Delta study here. You can also access the published systematic review here. 

https://doi.org/10.1016/j.pec.2018.02.001

The Behavioural Sciences Unit is Proudly Supported by the Kids with Cancer Foundation.

Clarissa Schilstra has recently joined the BSU team as a research officer for the Education and Cognition stream. This is her first post for the BSU blog.

As a two-time cancer survivor, I feel incredibly privileged to be able to work with the BSU on studies and interventions that I know are helping to take steps towards making a positive difference in the lives of children and young people with cancer and their families.

I was first diagnosed with Acute Lymphoblastic Leukaemia when I was 2 ½. I was born in Pennsylvania, in the U.S., so I went through 2 ½ years of chemotherapy at the Children’s Hospital of Philadelphia. Fortunately, the treatment was successful and I went into remission. I do not remember almost anything from that first bout with cancer. However, in June of 2007, at the age of 13, about 10 years after my initial diagnosis, my leukaemia relapsed. I then had to go through another 2 ½ years of chemotherapy, this time also accompanied by 2 weeks of radiation to my head. I was living in Maryland, in the U.S. at the time, so was treated at Johns Hopkins Hospital.

Going through cancer treatment as a teenager changed my life in more ways that I can count. Unlike the treatment I went through as a child, as a teenager, I understood exactly what was happening to me and remember everything I went through. Because of the intensity of my treatment and its impact on my immune system, I was not allowed to go to school for the entire first year and a half of my treatment. Instead, I was taught at home, by a teacher provided by my state’s home and hospital teaching program (a luxury that I later found out does not exist in most states in the U.S.). The social isolation imposed by my treatment, and the difficulty I had relating to my peers when I finally did go back to school, were incredibly difficult to manage. In many ways, I found the social and emotional challenges of going through cancer treatment as a teenager to be more difficult to handle than the physical impact of treatment.

The social and emotional challenges resulting from the isolation, physical changes (hair loss, scarring, weight gain, etc.), and extended amount of time I spent only around adults, were made even harder by the fact that it was nearly impossible to find other people my age who could understand what I was going through. I felt like I was the only one whose life was completely out of control. The playroom was for little kids and the support groups were for adults. Where did I fit in?

I wished for a guide, a kind of road map, that could tell me what to expect and help me understand what I could do to maintain a positive attitude, and manage the isolation and social challenges. At one of my low points, my mom said something to me that has stuck with me since then: “Clarissa, you have to take this adversity and turn it into an opportunity.”

I decided to follow her advice. Once my treatment ended, in 2009, I made it my mission to create a guide for teens and young adults with cancer that would walk them through the stages of cancer treatment and provide advice and resources to help them manage the challenges they face along the way. I thought, this guide is the perfect opportunity for me to help other young people with cancer and turn the adversity I faced into something useful.

I began my path towards writing the book by starting a blog, which I continue to update, at www.teen-cancer.com. I finally finished my book, Riding the Cancer Coaster: Survival Guide for Teens and Young Adults, in August of 2015, and it was published that October. You can find the book on Amazon.com.au and it is available for purchase in either print or e-book format.
 
Since publication, Johns Hopkins Paediatric Oncology and Duke University Health System Teen and Young Adult Oncology have each begun to share the book with their new teen and young adult patients. I am grateful to have been able to use my experience to help other young people with cancer because it gives a sense of purpose to the difficult things I went through.

That is why I always encourage young people who have or have had cancer to take the adversity of the cancer experience and turn it into an opportunity, whatever that may be. It could be:

• An opportunity to take the time you are missing your friends in school to focus more on your schoolwork at home, and do it well
• An opportunity to spend more time on hobbies you enjoy
• An opportunity to learn from the adults you meet in the hospital (doctors, nurses, social workers, psychologists, hospital learning support staff, etc) and possibly get inspired by them to pursue a similar career path
• An opportunity to share your story at a fundraiser for cancer research or a cancer organisation you love, to let donors know why those causes are so important
• An opportunity to reinvent yourself and start fresh – trying new hairstyles, making new friends, getting involved in new activities, and doing things you may not have done before

When I set out to write my book, I never expected it would lead me to a career in research to find ways to improve the quality of life of young people with cancer and their families. But, I continue to find purpose in my experiences with cancer. I am very glad those experiences led me to where I am today, so that I may continue to make a difference, even if only in small ways.

The Behavioural Sciences Unit is Proudly Supported by the Kids with Cancer Foundation.

This is the third blog in a series of blogs written for us by Nell Hanbury – cancer survivor and registered nurse. You can read more about Nell’s story in her first blog post here, or second post here.  ​

​Cancer can be a really stressful time. Because of this, mental illness and cancer can sometimes often go hand in hand. In addition, as young people, we are more prone to developing mental illnesses, such as depression or anxiety, compared to other age groups. That is not to say that these issues are inevitable. I was able to maintain good mental health during treatment. It is really important to look after the mind as well as the body. Being aware of your mental state and using coping strategies may prevent distress later down the path. There are lots of things you can do to prevent poor mental health.

While some strategies may work for some people, others may not find any of these useful.

If you have any strategies that you know help you cope with a stressful situation, try using them again and see if they work. Before going into an exam at uni, I used to meditate. After my cancer diagnosis, I began practicing meditation daily which helped me feel calmer and less stressed, as it did before an exam.
 
Here are some of my suggestions that have helped me and some of my friends going through cancer treatment:

​Strategy: Meditation
Purpose: To relax, reduce stress
​Reason & further information: 
      Mindful Meditation CD. You can order a free copy through the Cancer Council by calling 13 11 20

​Strategy:  Mindfulness
Purpose: To relax, reduce stress
​Reason & further information: 
     * What is mindfulness and meditation? http://kidshealth.org/en/teens/meditation.html
     * ‘Smiling Mind’ – mindfulness app or website http://smilingmind.com.au/ (free)

Strategy: Exercise
Purpose: To improve mood but also has many other benefits including reducing risk of recurrence.
​Reason & further information: 
      * Life Now program – Cancer Council WA https://www.cancerwa.asn.au/patients/support-and-services/life-now/ (free) Includes yoga and exercise classes as well as meditation and cancer education seminars
      * Go walking with a buddy – you are more likely to do it if someone else is goes with you

​Strategy: Keep a journal/diary
Purpose: To offload and process emotions
​Reason & further information: 
      Can be written form, photos, video, or combination

Strategy: Art​
Purpose: Same as above and distraction
​Reason & further information: 
      * Some hospitals have an art program for patients
      * Check out if there are any classes in your local community
      * Scar Stories creative program for 18-35 year olds http://www.scarstories.org/for-patients-survivors (free) sewing, painting, photography

Strategy: Music
Purpose: Distraction, reduce stress
​Reason & further information: 
​      Listening to music, playing an instrument, or singing. You could make a playlist with songs which have themes of survival and/or resilience
      * Check out if there are any classes in your local community
http://www.redkite.org.au/support/music-therapists

Strategy: Hanging out with friends (animal and/or human variety)
Purpose: Distraction, reduce stress

Strategy: Audiobooks
Purpose: Distraction
​Reason & further information: 
      Borrowbox – app which enables library members to borrow ebooks and audiobooks from the comfort of your own home. You just need your membership number (free)

Strategy: Talk to your GP and/or cancer healthcare team
Purpose: To offload feelings, get support
​Reason & further information: 
      There may be a psychologist attached to the oncology/haematology unit. Ask your doctor to be referred to them if you feel as though you would like some extra support. Psychologists can support you through your treatment, provide information and useful tips, and be there to talk to when you are feeling down

Strategy: Ask your Dr whether there is a youth cancer centre or service/health team for adolescents and young adults which you can be referred to
Purpose: To improve your wellbeing. 
​Reason & further information: Information about youth cancer services http://www.youthcancer.com.au/

Strategy: CanTeen
Purpose: To provide support to young people with cancer aged 12-25
​Reason & further information: 
      This is one of the main organisations which supports young people with cancer. They provide a variety of tools to assist you such as counsellors, information, an online community where you can connect with others in a similar situation, and peer support programs. Email: support@canteen.org.au, ph: 1800 835 932, http://www.canteen.org.au (free)

Strategy: Headspace
Purpose: To improve the wellbeing of young people aged 12-25​
​Reason & further information: 
      Provides info about mental health issues and counselling services which are delivered online, over the phone and/or face-to-face. You can access various health care professionals such as counsellors, psychologists, and social workers. Headspace centres are nationwide.
http://headspace.org.au/ (free or low cost)​

Strategy: Beyondblue
Purpose: To help people protect and promote good mental health and wellbeing
​Reason & further information: 
​      Provides info about mental health issues and support services which are delivered online (forums, online chat with mental health professional, The BRAVE program for anxiety) and/or over the phone
Ph: 1300 22 4636 https://www.youthbeyondblue.com/home (free or cost of local phone call)

​







​The Behavioural Sciences Unit is Proudly Supported by the Kids with Cancer Foundation.

Two Research Officers from the BSU, Jennifer White and Mary-Ellen Brierley, were fortunate enough to attend the Kids with Cancer Foundation (KWCF) Luncheon on September 29th to launch the Scare Cancer Halloween campaign. The Sydney Children’s Hospital has been the grateful recipient of over $8 million funding in the past 20 years, including $1.5 million towards the expansion of our Kids Cancer Centre research facility. Particularly, the Foundation has supported the work of the BSU’s translational research across the Recapture Life, Cascade and the Grandparents studies.

The Scare Cancer campaign will run throughout October, and aims to continue to assist the KWCF in raising funds to support the families of children with cancer who are struggling financially, and to support the work of medical staff and social workers in caring for these children and their families. To find out more about the Scare Cancer campaign and how to fundraise for the KWCF this month, visit: https://www.kidswithcancer.org.au/support-the-foundation/halloween-scare-cancer.html

​The Behavioural Sciences Unit is Proudly Supported by the Kids with Cancer Foundation.

This is the second blog in a series of blogs written for us by Nell Hanbury – cancer survivor and registered nurse. You can read more about Nell’s story in her first blog post here.  

It is totally okay to not have a positive attitude 100% of the time. However, it is important to maintain hope, whatever that might mean for you. This can be challenging if you have suffered a lot of setbacks, have a poor prognosis, or are struggling, emotionally or physically, with treatment. Coping with a cancer diagnosis is a delicate balance of being positive or hopeful, and also being realistic.

Reading stories about other people who have had cancer may be helpful…     
     http://www.redkite.org.au/real-stories
     https://www.canteen.org.au/how-we-help/about-us/member-stories/
     http://www.scarstories.org/our-scar-stories/
 

I am a devotee of an awesome podcast called Jesse vs Cancer which is about a 29 year old stand-up comedian who is diagnosed with stage IV bowel cancer. Jesse talks about other stuff as well and is pretty funny.
Get it on the iTunes Store or here: http://jessevscancer.com/

​
Follow cancer ‘survivors’ on social media…

Delta Goodrem
Hodgkin’s lymphoma
18 at diagnosis
https://www.facebook.com/DeltaGoodremMusic/
https://www.instagram.com/deltagoodrem/?hl=en
https://twitter.com/deltagoodrem?lang=en

Tessa James
Hodgkin’s lymphoma
23 at diagnosis
https://www.instagram.com/tessacharis/?hl=en
 
Adam Deans
Osteosarcoma
17 at diagnosis
https://www.instagram.com/adam_deans/
https://twitter.com/adam_deans?lang=en

Ben Bravery
Bowel cancer
28 at diagnosis
https://www.instagram.com/benbravery/?hl=en
http://benbbrave.blogspot.com.au/
https://twitter.com/benbravery?lang=en


It may be helpful to think about some kind of fun activity that you’d really like to do, or an experience you’d like to have, to lift your spirits and maybe cross something off that bucket list. You might like to meet your idol, travel somewhere or have a makeover and photoshoot. For my wish, I would have opted to meet a panda, sing with Delta Goodrem, or visit the Great Barrier Reef. Here are some organisations that can help make your dreams come true…

​Dreams2live4
Ph: 0400 914 375, email: info@dreams2live4.org.au
Adult patients with any of the following…

• Metastatic cancer – meaning any cancer which has spread from its original site
• Advanced Glioma Stage 3 and 4
• Relapsed lymphoma
• Relapsed leukaemia

Starlight Children’s Foundation
Ph: 1300 727 827 

• seriously ill children and young people aged around 4-21

Make-A-Wish
Ph: 1800 032 260, email: enquiries@makeawish.org.au  

• under 18 at time of application
• life threatening medical condition

​An important note from Nell: “While you’re reading these posts, please bear in mind the suggestions I have made are only suggestions and based on my personal experience. My blogs do not imply any endorsement, non-endorsement, support or commercial gain by the Behavioural Sciences Unit or by the Kids Cancer Centre, Sydney Children’s Hospital. I, and some other young people I know have found them helpful, but you may not. I hope that you do find something here beneficial, and that reading my story has made you feel like you are not alone in this battle.”

This is the first blog in a series of blogs written for us by Nell Hanbury – cancer survivor and registered nurse. ​

Hi, my name is Nell and I am a cancer survivor. I was enjoying an independent life, working full-time in Sydney as a registered nurse, when I was diagnosed with non-Hodgkin’s lymphoma in 2013. I was 25 years old. My adult life had barely begun.

          I was scared that I would die. At this point in time, I felt that I hadn’t really achieved much. I wanted to do so much more. I was worried about the people I would leave behind, particularly my parents. The death of our dear family friend, who was a similar age to me, was fresh in our minds.
Continuing to live in a share house was no longer an option so I had to move out. My generous grandmother offered her beach house to us; this is where Mum and I lived for the duration of my treatment. My folks live in a country town about five hours from Sydney. Mum literally dropped everything and put her life on hold to save mine. 

       For health reasons and practical reasons, I chose to stop working. From the beach house, work (where I was now a patient) was a 1.5 hour commute on a good day. Luckily, I was covered by leave entitlements for most of the time I had off.

Every three weeks, I went to hospital as an outpatient to get the CHOP (cyclophosphamide, doxorubicin, vincristine, prednisone). A few hours later I would be vomiting vigorously, which on one occasion necessitated a mercy dash to the emergency department. My hair starting falling out a couple of weeks after the first cycle. Whilst I didn’t feel the loss keenly, it did make me feel somewhat vulnerable and took my self-esteem down a notch or two. Fatigue was a major issue as well. I probably slept for about 12 hours a day, including ‘power naps’. 
           
       One day during my cancer treatment, while I was lying in bed feeling sick and sorry for myself, it suddenly came to me that my purpose in life, my calling, was to be a cancer nurse. In 2015, I completed a post graduate certificate in cancer and haematology nursing. I now work as an oncology nurse, volunteer with the Leukaemia Foundation as a ‘Blood Buddy’, and am occasionally called upon to offer support to friends of friends which I love doing.

            After finishing treatment I lived at home with my parents for a few years in the Central West NSW where I grew up, to begin rebuilding my life. The loss of independence was definitely one of the most challenging impacts cancer has had and getting it back took longer than I expected. I finally moved out of home (again) in July 2017 after getting my dream job at a cancer centre in Sydney.

       One assessment I did for my post-graduate course was an essay about caring for a vulnerable population in the context of cancer; I chose to focus on adolescents and young adults. This assessment, along with my own experience with cancer, inspired me to create a guide filled with the information I have discovered and used along my cancer journey.

I want to share this guide with other people – both researchers, clinicians and young people going through the cancer experience. In my series of blogs, I will be posting a different topic each week!

       While you’re reading these posts, please bear in mind the suggestions I have made are only suggestions and based on my personal experience. My blogs do not imply any endorsement, non-endorsement, support or commercial gain by the Behavioural Sciences Unit or by the Kids Cancer Centre, Sydney Children’s Hospital. I, and some other young people I know have found them helpful, but you may not. I hope that you do find something here beneficial, and that reading my story has made you feel like you are not alone in this battle.
​
As of 2017, I have been in remission for three years.
 
You can read more about my story here:
http://www.cancer.org.au/about-cancer/share-your-cancer-story/nell-hanbury.html
http://www.leukaemia.org.au/news/nell-hanbury-triumphs-and-gives-back-as-a-blood-buddy