Awareness plus action

Our Ependymoma Awareness Day event was a fantastic success!

On the morning of the event, our supporters were out in force on the streets of Perth shaking donation tins for Ethan’s Scholarship and handing out stickers and flyers.

Later in the day, supporters of the Scholarship joined the CBD lunch crowd in Forrest Place to hear presentations by Professor Jonathan Carapetis (Director, Telethon Kids Institute), me, the Right Honourable Lord Mayor Lisa Scaffidi and Laurence Goodman (Director, Harcourts Central), which were followed by a mass butterfly release. We arranged a face painter to paint butterflies for children in return for a gold coin donation, and special butterfly balloons were handed out. We also had a number of people volunteer their time to shake tins in and around Forrest Place while the presentations were on.

During his presentation, Laurence handed over a cheque for $10,000 for Ethan’s Scholarship. All in all, we raised over $12,000 on the day for childhood brain cancer research: awareness plus action.

It took an incredible amount of work to put the event together, and I’d like to thank everyone who contributed towards making it a success: particularly Sam Hooper at Telethon Kids, Casey Brooks at Harcourts Central, Laurence for his generosity in having Harcourts Central cover the event costs (over and above the firm’s $10,000 donation), Sean Wright at QuickColourPrint Gosnells for printing flyers, and Jonathan and the Lord Mayor for making time in their busy schedules to speak at the event.

For those who missed the event, I’ve pasted a copy of my speech below, as well as a photo gallery.

Thank you to everyone for sharing this special event with us.

I’d like to start by acknowledging the Right Honourable Lord Mayor of the City of Perth, Lisa-M Scaffidi, the Director of the Telethon Kids Institute, Professor Jonathan Carapetis, and Laurence Goodman, Director of Harcourts Central.  Harcourts Central is our newest partner, and the major sponsor of today’s event.  Finally, I’d like to acknowledge the supporters of the Ethan Davies Scholarship, including the many people who have volunteered their time to put this event together, particularly Samantha Hooper of the Telethon Kids Institute and Casey Brooks of Harcourts Central.  Earlier this morning we had a number of volunteers shaking donation tins around the Perth CBD, and you may have noticed we have more volunteer tin shakers roaming in and around Forrest Place right now.

Ladies and gentlemen, it has been said that something as small as the flutter of a butterfly’s wing can ultimately cause a typhoon halfway around the world.  If that is true, then the two hundred or so butterflies which we will release in just a little while might just, with your support, make the difference in the fight against childhood brain cancer.

Today coincides with Ependymoma Awareness Day, a day which was first established in the United States by the CERN Foundation three years ago.  Ependymoma, which also affects adults, is the third-most common type of brain cancer in children.  It is also the cancer which has touched my family.

Today we join doctors, scientists, patients and caregivers holding their own events all around the world, many of them including butterfly releases, in raising awareness of ependymoma  Today’s event has a specific focus on the childhood form of ependymoma.  However, I would like to take this opportunity to specifically acknowledge the many other forms of childhood brain cancer, and the amazing children who battle against this disease.  Not every type of cancer has its own awareness day.  But I hope that events like this can act as a springboard for awareness and action for all childhood brain cancers.

There are two components to what we are trying to achieve here today.

The first is to raise awareness of childhood brain cancer, particularly childhood ependymoma.  I want to emphasise this point: childhood brain cancer is statistically the greatest non-accidental killer of children in Australia.  It is worth pausing to think about what that means.  For those of you who are parents, it means that, barring accident, the most likely life-threatening risk to your child is brain cancer.  That is a fact which isn’t well known.  It should be well known.  If you didn’t know it before, now you do.

The second thing we want to do is to challenge you to do something about childhood brain cancer, particularly by supporting the Ethan Davies Scholarship.  A disease which deserves the title of “greatest non-accidental killer of children” also deserves urgent and commensurate action through medical research.  That research is hampered by a lack of funding, which in part stems from a lack of awareness.  The lack of funding is reflected by the fact that survival rates for childhood brain cancer have, in the last decade, reached a plateau well below that of other childhood cancers, such as leukaemia.

The Ethan Davies Scholarship, which I’m asking you to support, is named after my only son.  Ethan will turn four in a week or so, but he was only 20 months old when he was diagnosed with ependymoma.

It is hard for me to convey exactly how devastating this diagnosis was for me, my wife Christie-Lee and our families.  The survival rate statistics for childhood brain cancer are confronting, especially when the cancer recurs, as it sadly often does.  Add to that the fact that “survival” for statistical purposes often just means making it five years after diagnosis.  Personally, reconciling myself to the idea that my son has brain cancer, and to the possibility that he may very well die from this disease, is a difficult and ongoing process.  I find it hard to imagine living in a world without Ethan’s cheeky smiles and laughter, his generosity of spirit, his little hand taking mine when I come home at the end of each day – and his hugs (he gives the best hugs) – but I know that this is an outcome which is very much on the board.  If Ethan is lost to this world, the world will be poorer for it.

I want you to know some things about Ethan.

I want you to know that he loves the Wiggles, Play School, and Toy Story.  He loves swimming and dancing.  He insists on being read books before he goes to bed every night.  He goes to Play Group and swimming lessons, and my wife and I are delighted and proud of the fact that he has started kindy this year.  The reason you need to know this is because Ethan could very well be your own son, or brother, or friend.  You don’t get a warning when it comes to childhood brain cancer.  The causes are still unclear.  Ethan has no family history of brain cancer, and none of the known risk factors applied to him.  Ethan’s arrival was planned with meticulous detail: my wife read all of the pregnancy books and took all the supplements.  I never thought that the kid with cancer on the news would be my kid.

I want you to know that Ethan endured six surgeries at Princess Margaret Hospital before the age of two, including a nine-hour operation to remove a tumour the size of a human fist.  He spent about three months straight in hospital, much of that time immobilised in a cot.  His surgeries were followed by seven weeks of chemotherapy, and then 33 consecutive week days of radiation therapy in Melbourne, receiving each dose of radiation under general anaesthetic.  X-rays, CT scans, MRI scans, blood tests, urine tests, lumbar punctures, an ever-changing cocktail of drugs: all of these things became routine parts of Ethan’s life.  All in all, he lost about a year of his life in and out of hospitals.  That is a lot for a two-year-old.

I want you to know that Ethan has had to learn to sit, crawl and walk twice over.  He is only just learning to eat again and still receives much of his nutrition through a nasogastric tube.  He has a palsy down the left side of his face, and a programmable shunt implanted in his skull.  I don’t generally think long-term, but the long-term consequences of the exposure of Ethan’s developing brain to radiation may include significant cognitive deficits and issues relating to hormone regulation.  For now, Ethan has an MRI scan every few months to look for recurrences of his tumour, and my wife and I attempt to carve out some form of normalcy in the small, claustrophobic spaces between each scan.

I want you to know all of these things about Ethan so that you understand that childhood brain cancer can touch anyone, and so that you have some sense of the magnitude of the challenges kids with brain cancer face, in both the short and long term.  Again, we are talking about the greatest non-accidental killer of children in Australia.

We can all do something about childhood brain cancer.  And whatever we do, no matter how small the action, has the potential to make a difference.  When Ethan was diagnosed, my wife and I were motivated by a sense of powerlessness to ask Ethan’s doctors, “what do you need, and what can we do?”  Their answer led to the establishment of the Ethan Davies Scholarship for Brain Cancer Research.

The Ethan Davies Scholarship is an annual scholarship established by my wife and I in partnership with the Telethon Kids Institute, which supports the work of a researcher in the Institute’s existing brain tumour laboratory team, with a particular focus on ependymoma.  Each Scholarship recipient is selected by Dr Nick Gottardo, a paediatric neuro-oncologist at Princess Margaret Hospital who is also Head of Brain Tumour Research at the Telethon Kids Institute, and Dr Sharon Lee, a consultant paediatric neurosurgeon at Princess Margaret who oversaw much of Ethan’s care.  One of the aims of the Scholarship is to bridge the divide between surgical and physicianly perspectives.  In this regard, each Scholarship recipient will combine laboratory research at the Telethon Kids Institute with neurosurgery training, and will be guided by both Dr Gottardo and Dr Lee.

I am pleased to announce that the first recipient of the Scholarship, Dr Sasha Rogers, recently relocated from Townsville to begin his work in February this year.  It is my hope that Dr Rogers’ work will make a real difference in combination with the Telethon Kids Institute’s existing childhood brain cancer research teams, in their efforts to accelerate the development and introduction of new and improved ways to prevent and better treat this devastating cause of illness in children.

Awareness without action is not enough.  Earlier, I challenged you to do something about childhood brain cancer by supporting Ethan’s Scholarship.  I want you to ask yourselves the same question that my wife and I asked our doctors when Ethan was diagnosed: “what can we do”?  You can do many things.

You can spread the word about Ethan and his Scholarship.  You can make a donation to one of our volunteer tin shakers roaming around Forrest Place right now.  You can make an online donation, or set up an ongoing donation, via the website for Ethan’s Scholarship – www.ethandaviesscholarship.com.au.  You can host a donation tin or fundraising event in your workplace, or fundraise with a fun run – you can join our team in this year’s HBF Run for a Reason, which has already raised close to $6,000.  Or, like Harcourts Central, you could decide to make a substantial contribution to childhood brain cancer research by becoming one of our corporate partners.  You can find information on how to do all of these things on the Scholarship website.  If something as small as the flutter of a butterfly’s wing can cause a typhoon halfway around the world, then no contribution is too small to make a difference.

Thank you.

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