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.

Making the most of every day with Ethan

I’ve mentioned the CERN Foundation before in my post about our upcoming Ependymoma Awareness Day event. I also put up a post in relation to last year’s Ependymoma Awareness Day. Like us, the CERN Foundation is dedicated to ultimately finding a cure for ependymoma, although Ethan’s Scholarship is focused on the paediatric version of the disease (and the Foundation doesn’t currently have a research facility in Australia).

I was touched to be invited to share Ethan’s story on the CERN Foundation’s website, which you can read here. Ethan is also featured in the Foundation’s February newsletter.

One of the questions I was asked was whether I had any advice for other parents of children with ependymoma. This was my response:

The most important thing for us is to make the most of every day we have together with Ethan. As parents, the best advice we can give to others with children battling ependymoma is to discard all expectations you might have of your child, appreciate your child for who they are, take nothing for granted, and take heart from small victories.

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Ependymoma Awareness Day 2014

We are very excited to announce a very special event in the heart of Perth to mark Ependymoma Awareness Day on 10 April this year!

On the day, some of our supporters will be shaking collection tins at various locations across the city seeking donations for Ethan’s Scholarship. Then, at about 1pm in Forrest Place, there will be some short presentations (including presentations by the Lord Mayor and Professor Jonathan Carapetis, Director of the Telethon Institute for Child Health Research), followed by a mass butterfly release. Each butterfly released will symbolise hope for those suffering from brain cancer: for us, this will mean hope for those suffering from childhood ependymoma in particular.

We’ll be joining patients, families, doctors and scientists at other locations around the world, who will also be marking the day with their own events. Our aim is both to recognise Ependymoma Awareness Day, and to raise awareness and research funding for childhood brain cancer through Ethan’s Scholarship (for those who don’t know, Ethan’s Scholarship supports childhood brain cancer research at the Telethon Institute, with a particular focus on childhood ependymoma).

I would like to add that this event is only possible because of the generosity of Laurence Goodman and his team at Harcourts Central, who are both sponsoring the event and becoming one of our major partners. We are very grateful for this support.

If you would like to help make the day a success, we are looking for as many volunteers as possible to shake collection tins in the city on the day of the event both during the morning (when people are coming to work) and during the 1pm lunch hour. Prospective tin-shakers, please contact me via shannon@ethandaviesscholarship.com.au!Butterfly-Release-Flyer

Ependymoma Awareness Day

Yesterday was the second Ependymoma Awareness Day promoted by the CERN Foundation (CERN stands for Collaborative Ependymoma Research Network – not to be confused with the organisation which operates the Large Hadron Collider).

To mark the day, hundreds of monarch butterflies were released at St. Jude Children’s Research Hospital in Memphis, Tennessee. Each butterfly was intended to symbolise the hope of improved treatments for ependymoma sufferers.

You can watch a news report on the butterfly release here.


Update: the CERN Foundation has just released its report on the day, as well as its own video of the butterfly release (much better quality than the news report).

Hundreds of brightly colored butterflies covered the skies over St. Jude Children’s Research Hospital as they were released by patients, scientists and doctors to mark the second annual Ependymoma Awareness Day on April 18, 2013. Ependymoma is a rare cancer of the brain or spinal cord that strikes children and adults. The event is organized by the Collaborative Ependymoma Research Network (CERN) Foundation.

CERN’s scientists and clinicians work in concert to better understand and speed advances against ependymoma in both pediatric and adult patients. St. Jude leads the pediatric studies, and M.D. Anderson Cancer Center leads the adult studies.

The butterfly release coincided with the semi-annual CERN investigator meeting at St. Jude. The butterfly release symbolizes the buoyed hope of improved treatments for this devastating cancer through collaboration.

“Through this team science approach, talented researchers are uniting in one cause that studies ependymoma from the laboratory to the clinic and across the life span,” said Richard Gilbertson, M.D., Ph.D., Comprehensive Cancer Center director at St. Jude and co-principal investigator of CERN. “Our collaboration with CERN is a natural extension of St. Jude’s cornerstone philosophy to freely share research and discoveries as a means to advance cures worldwide.”

CERN began in 2006 to jumpstart ependymoma research globally. Since then, more than 20 institutions have joined the endeavor. More than 80 patients have been enrolled in CERN clinical trials and discoveries in the laboratory are fueling progress.

The best news…and a moment to reflect

Last week, Ethan had his first MRI scan post-radiation therapy to check on his brain and spine. There was no tumour visible on his last MRI scan back in April (prior to starting radiation therapy), but of course you never know if or when it may return. Ependymoma has been known to return even 15 years after treatment (although the risk decreases over time).

Shannon, Ethan and I went into PMH yesterday to see Dr Nick Gottardo and oncology liaison nurse Suzanne for the results from the MRI scan last week. Wonderful news – the best news possible – there is no tumour visible in Ethan’s brain or spine. His brain isn’t exactly normal (given the extent of his surgery) but the ventricles are a normal size so this means the shunt is doing its job and keeping the fluid in his brain stable.

Needless to say, we were so relieved. And happy and every other emotion you could imagine, better than winning lotto or in Shannon’s case, a cricket grand final. But then, before it could really soak in, for me it was back to business. I had a page and half of questions and issues to discuss with Dr Nick and Suzanne (thankfully they have the patience of saints!), because Ethan’s situation is so complicated.

When Ethan first fell sick, and for the many weeks after while he was in hospital, I was pretty strong in my view that I wanted the doctors to do anything they could to keep him alive. Many times Shannon and I consented to procedures that involved risk (some more so than others) but I found it hard to talk about long and short term side effects – if it needed to be done to give him a chance to live, then I wanted it done ASAP! Now as we have learnt more about the treatment and time has passed, I have realised that for the doctors, nurses, researchers and everyone involved in trying to treat childhood cancers, while it is primarily about finding “a cure” or keeping the cancer at bay, at the same time the short and long term side effects on such young little bodies cannot be ignored.

I think that Shannon and I have been fortunate in that Ethan’s doctors have been able to use their wisdom and the benefit of their hindsight in treating other children to help guide us along and make informed decisions which have given Ethan the best shot at survival, but also tried to minimise side effects (particularly the long term ones) where at all possible. I think Dr Nick explains it best in his video from the launch (see below) when he talks about how even the children who manage to survive brain cancer are left with serious long term side effects – and this is why the research into improving our available treatments is so critical.

What does this mean for Ethan? First and foremost – we need the cancer to stay away. This is still the absolute number 1 goal, and it means that Ethan will have MRI scans every 3-4 months from now on to monitor his brain and spine and check that it hasn’t returned. His next MRI scan will be in mid-January. The next part of the puzzle is to address the short term and long term effects that the cancer and treatment has had on Ethan. For all our joy yesterday – and believe me we couldn’t be more grateful for the best news in the world! – for Ethan’s sake we now need to help him rehabilitate his disabilities and find a way to enjoy his life as an innocent little boy (although sometimes not so innocent, rather cheeky and crafty…I swear he knows more than he lets on!).

I read a wonderful quote once from a parent of a child with a brain tumour. She said “I hope that cancer does not become your life. For us, it used to be an “elephant in the living room”, and now it’s maybe a “zebra in the kitchen”. There are times when it demands everything you can give, no doubt, but there will be moments when there is time for the rest of your life“. I like to think that’s what Ethan has for the next few months at least – time for the rest of his life.