One Retinoblastoma World:
A new realm of discovery.
Saturday February 10, 2018
Sandra Staffieri, Retinoblastoma Care Co-ordinator at the Royal Children’s Hospital, Melbourne, reflects on how One Retinoblastoma World has influenced her practice, her early diagnosis research, and her life.
A Round-the-World Journey to New Beginnings
One Retinoblastoma World set me on a journey I never expected to take, but which has led me on the greatest voyage of discovery I could have ever imagined. As a health professional, I have been privileged to walk alongside parents, their children and survivors at their most vulnerable. Moreover, I have been blessed with the friendship of colleagues, survivors and parents who have taught me much about resilience, courage and tenacity.
My journey started when after almost 20 years looking after children and their families with retinoblastoma, I was fortunate enough to be granted a Brainwave Travelling Scholarship from the Royal Children’s Hospital in Melbourne, Australia. The purpose for my travel was to visit retinoblastoma treatment centres of excellence, to examine their models of care and determine what we might do differently to better look after our children and their families in Melbourne. My planned journey included attending a paediatric eye disease conference in Milan, and then visiting Retinoblastoma treatment centres in Toronto, Boston, Philadelphia, New York and Los Angeles.
Just before I left, a flyer for the inaugural One Rb World Meeting, to be held in London, landed in my in-box. It was scheduled for a few days after I was to return to my family after my planned 4-week trek. Now having travelled all the way from Australia, I was so close, and yet so far away. I was torn between returning to my family and then flying back to the UK after a couple of days or stay in LA and fly directly to London. Given the travel distance – I chose the latter. My family would, as always, understand.
And so, on a typically cloudy and grey, misty London morning I arrived at the conference centre on the Thames River. With magnificent views across the city of London, I was fully expecting another ‘conference’ in the format to which I was accustomed. The only difference being that it would be completely dedicated to retinoblastoma. I could never have anticipated what awaited. Instead of this meeting being a ‘full-stop’ to a long trip, it was the beginning of a whole new chapter, from which I would unintentionally receive so much more in return.
This was not ‘just another conference’ about “science” in the traditional sense, but uniquely brought parents, survivors and clinicians together – to better understand each other, and learn – why clinicians make the decisions they do, but more importantly the clinicians could listen to parents and survivors to better understand their needs, anxieties and concerns – to better serve them and their children.
For so many years when I spoke of my ‘job’ as the Retinoblastoma Care Co-ordinator, of course no-one had heard of retinoblastoma, let alone could fathom that a child could possibly have a cancer in their eyes! I had held this role for a very long time, but with such a small population we only had about 4 new children present each year. Compared to other major centres, this was a small number, but for our team of 2 ophthalmologists and I, that was a lot as we fitted their care in around full time paediatric and adult ophthalmology practice.
I guess I felt somewhat isolated. Australia is a big country with a small population. We were the only medical team in our state looking after children with retinoblastoma. So, needless to say when I walked into that room in London, facing a sea of people whom I would soon realise shared a common vision, I was overwhelmed.
Some 50-60 delegates – parents, survivors, oncologists, ophthalmologists, nurses and child life / play specialists – were seated around that table. The sound of children’s joyful laughter and excitement briefly in the background.
As each presenter said their piece, the lightning bolts hit me: I had NEVER thought about ‘late diagnosis’. I had NEVER thought about children dying from retinoblastoma as a result.
In our small corner of the world, our children were diagnosed mostly before spread of the disease outside the eye. Like the minority of 10% of children with retinoblastoma in a developed country, they had access to the same treatments available anywhere in the world. We knew that the children we were treating had a 98% chance of survival. Further, no parent had to worry how they would pay for life-saving treatment for their child. In the face of a cancer diagnosis – I had never thought of them as ‘the lucky ones’. But I knew we had many children who had early signs that went unnoticed.
How could I have been so naïve and closeted in my thinking? How could I have presided over late diagnosis for so long and never given a second thought to why it was happening? Or worse, not done anything about it.
I had just spent the four preceding weeks trekking across the world trying to see what we could do better when really, our model of care was just as good as anywhere else. But I had never thought about the greatest challenge that faced children with retinoblastoma worldwide – early diagnosis. In reality this should be the easiest thing to fix.
Discovering a New Way Forward
At the Lincoln Memorial in Washington D.C., Sandra stands on the spot from which Martin Luther King Jr delivered his famous, stirring speech.
I returned to Australia with a bee [or maybe a beehive!] in my bonnet. How many parents had noticed the signs of retinoblastoma long before they thought to seek advice? Once they did decide that maybe something was wrong, how many hoops did they need to jump through before a health practitioner referred them on for specialist opinion?
The next One Rb World meeting in 2014 was held in Toronto. This time I presented some of our local data on delayed diagnosis, answering these questions. I made more friends amongst the delegates – collected ideas on how to advocate for play therapy (child life) back home to better support our little patients and subsequently their parents. The concept of post-traumatic stress disorder and the ramifications of intensive treatment at such a young age becoming more real and requiring urgent attention.
Two years later, 2016, we reconvened in Dublin. Many ‘old’ faces, but again some new – parents, survivors, children, health professionals – all strong advocates for those who face the challenges of this ‘rare’ disease. At One Rb World – retinoblastoma doesn’t feel rare. Coming from all the corners of the world, we shared the same stories. Developed countries, developing countries – we each had our problems we wanted to fix.
The stories and challenges from developing countries gave me a perspective I could never imagine having. As a geographic isolate, Australia is a wealthy country with an enviable health system, surrounded by small developing countries which make up Oceania. What were we doing to help? What could I do to give children and their parents hope? One Rb World gave me the courage and determination that something could be done – it just needed someone to do it.
Again, I greatly appreciated the opportunity to present my research, which by now had led me to enrol in postgraduate study – a PhD on Screening for Retinoblastoma and Delayed Diagnosis. Who would have thought that One Rb World would open my eyes so widely and lead me on this journey of self-discovery and knowledge?
Global Collaboration for Local Early Diagnosis
Sandra and Ligia take a moment for a photo while touring the iconic sights of Washington D.C. with families affected by retinoblastoma.
One Rb World 2017 – Washington DC – very quickly rolled around, with the promise of new horizons and achievements. For the first time, live-streaming of the sessions brought One Rb World to the world. Through the efforts of the Organising Committee, we were truly global and distance from the venue or financial resources did not prevent anyone’s participation. When the interactive question time started, I recognised one of my families from home listening in [at what would have been the middle of the night for them] and home didn’t feel quite so far away.
I was honoured to have been invited to Chair the Session on Early Diagnosis. I was not the expert, and I still I felt an imposter in the company of my international colleagues. In particular, Dr Ligia Fu, co-author of the only published retinoblastoma awareness program which I had used as the basis of my scholarship application to show that raising awareness can make an extraordinary difference to children’s lives. I am now proud to call her my friend! [photo of Ligia and I]
In the months leading up to this meeting I conducted an online survey of previous participants of One Rb World meetings, as well as retinoblastoma treatment centres registered on the One Rb World Map. With respect to awareness programs, I wanted to know who was doing what, where, and did it make a difference? After sending 145 emails, 28 surveys were returned. Whilst there were some reports of awareness programs, one third of replies indicated they had NEVER undertaken any program at all – including Australia and other developed countries. The most common reason for not running programs ever or rarely was: RESOURCES – financial and human. There is still much research to be done to provide the evidence that raising awareness makes the difference that is needed!
The importance of new treatments and equal access to treatment is vital. But so too is earlier diagnosis. The timing of diagnosis is crucial and is an important beginning for change – both in developed and even more importantly, developing countries as children’s lives depend on it.
One would think raising awareness of the early signs of retinoblastoma would be easy – but this has not been the case. Through One Rb World, we shared our stories of the challenges we faced trying to raise awareness, and that so much more needed to be done. By thinking globally and acting locally, together we could support each other and provide the much needed resources.
Again, over 3 days we shared learnings, stories and many tears were shed. Tears from survivors for not being understood or past traumas; from parents as they recalled the stress and anxieties related to their child’s diagnosis, treatment, outcomes and their future. And then there were my tears. The realisation that I could do so much more, so much better.
Hope Through Community
Many of the participants at One Rb World 2017 in Washington D.C.
In my role of Rb Care Co-ordinator there is often very little time to just ‘sit’ with a family and take the opportunity to really get to know them, to understand their worries and what it is that they are really going through. My own children have not had retinoblastoma, nor do they have any kind of vision impairment. No amount of experience working with families who face these challenges daily can really make you understand how it might feel.
By attending the One Rb World meetings, I came to realise I needed to be ‘outwardly less busy’, so parents could feel that I always had time to answer their questions or provide support. I have developed a far deeper understanding of the shock, trauma and distress experienced by parents as they nurse their child through diagnosis and treatment. I now have a greater appreciation of survivors’ challenges as they have their own children with Rb and the uncertainties they face. And with this understanding, I now have a unique opportunity to improve systems and support. My role is more than just ‘organising’ people to be in the right place at the right time.
In the Alphabet of Hope, created by parents and survivors affected by retinoblastoma, C = cancer; but it also stands for: Community, Care, Collaboration and Change…..
At One Rb World, I have found my tribe. We are an ever-increasing Community, who Care, and through Collaboration with each other, we will make Change.
About the Author
Sandra Staffieri is a Clinical and Research Orthoptist at the Centre for Eye Research Australia (CERA). Working at the Royal Children’s Hospital, Victoria (RCH) and in private clinics, she has over 30 years’ experience in children’s eye health and disease.
Over more than 20 years, Sandra has developed the unique role of Retinoblastoma Care Co-ordinator at the RCH. Supported by a National Health and Medical Research Council Public Health Post-graduate scholarship, Sandra is currently completing her PhD on delayed diagnosis of retinoblastoma. Motivated by delayed diagnosis, Sandra’s prime focus is to develop and evaluate an education program for new parents to raise awareness of the important signs of childhood eye disease.