Telethon Kids Institute

For those who don’t know, as of yesterday the Telethon Institute for Child Health Research officially became known as the Telethon Kids Institute.

Below is the Institute’s snazzy new logo: we like very much. (Also, “Ethan Davies Scholarship for Brain Cancer Research” and “Telethon Institute for Child Health Research” can be a real mouthful in the same sentence.)

TKI logo

We were honoured that our whole family was invited to the official launch of the new brand at the Institute yesterday evening. Ethan had a fantastic time in the “Kids’ Zone”, running laps around the activity area, stealing food and balloons, and generally creating a mess. The girls hung around with the adults, and squawked during the official presentations.

Thanks to everyone at the Institute who was involved in putting together the event (and apologies to those who had to clean up after Ethan).

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

HBF Run for a Reason 2014

This year’s HBF Run for a Reason is on Sunday, 25 May 2014! We’re looking for 20 people to sign up and commit to raising $250 each for Ethan’s Scholarship – can you help?To join our team, go to www.hbfrun.com.au and sign up under the team name “Ethan Davies Scholarship for Brain Cancer Research”. You’ll need to nominate “Telethon Institute for Child Health Research” as your charity. You can also join our team fundraising page, or make donations to our runners, via this link.Thanks again for your continuing support, and feel free to invite family members and friends!

Leaping tall buildings

A brief follow-up to the earlier post on this year’s major fundraiser.

One of the themes for the night was written on the invitation: “leaping tall buildings”. For those who haven’t been following us on Facebook or Twitter, the event was a great success, raising over $16,000.00 through raffle tickets, auction items and donations. This money will go a long way towards leaping the tall building that is our $150,000.00 fundraising target for the second year of Scholarship!

A special thank you once again to everyone who supported the event by buying raffle tickets and bidding in the auctions, making cash donations, donating raffle and auction items, and putting together the cupcake stall to entertain the kids.

Below you’ll find a selection of photos taken on the night.

In the media

For those who are interested in having a read, there have been some nice features on the Scholarship and Ethan’s story recently.

The Melville Times ran a story on the Scholarship in the lead-up to the recent fundraiser at All Saints’ College, on page 3 of their 3 September 2013 newspaper. You can read this online via this link (you’ll need to register to access the website and search for back editions). The College also ran a story in their latest edition of The Dove (page 65).

We also got a plug in the latest edition of the Telethon Institute’s Under the Microscope magazine following this year’s major fundraiser, which is accessible online here.

It takes a village to raise a child…

For those who don’t follow us on social media, last Friday’s major fundraiser was a great success! Thanks to all of our generous family members, friends and corporate and other supporters who contributed to what was a very important night for us.

We are in the process of tallying up donations and will release the final figure soon, along with photographs and a more comprehensive report.

In the meantime, for those who couldn’t be there, below is Christie-Lee’s speech from the night.

As the saying goes “it takes a village to raise a child”.

 In Ethan’s case, the village is full of many special people. Tonight, I would like to talk to you about Ethan’s recovery so far, some of the special people in his village, and why supporting this scholarship means so much to us.

 Ethan’s recovery so far

 When we saw you all last year to launch the scholarship, Ethan had only just finished his treatment – the surgery, chemotherapy, and radiation therapy. The treatment was successful – there was, and still is, no sign of the tumour. However, this is only a small part of the picture. Ependymoma, the type of cancer Ethan has, is very aggressive and commonly recurs. There is no cure, and it can come back up to 15 years later.

 This means that recovery, in Ethan’s case, means learning to live with this. To accept that he will always have routine scans to monitor his brain, and we will always live with the ups and downs of what is referred to amongst “cancer mums” as “scanxiety” – the irrational thoughts and fears that come with each scan. The best part of scanxiety is realising that it is normal, and that life can – and should be – lived to the fullest in between each scan.

 Luckily, those of you who know Ethan well know that Ethan has no problems with tackling life full on. And so we put the cancer to one side, as much as we can, and work on the more positive side of Ethan’s recovery – maintaining his wellbeing, and therapy.

 Ethan has come a very long way since his treatment last year. Sometimes I forget how far, because I see him every day, but then I see the looks of wonder and delight on Dr Sharon’s and Dr Nick’s faces when they see him and I am reminded of just how amazing his recovery has been. Ethan has learnt to sit, crawl and walk all over again. The palsy down the left side of his face is vastly improved. Although he still needs his nasogastric tube for food and water, he is interested in food again and enjoys finding ways to steal food and take off licking it!

 Fortunately, Ethan has been able to return to many of his favourite activities, including playgroup and swimming lessons. He really gives his all to everything he does, whether that be running loose with the glue and glitter during art and craft at playgroup, or insisting that he be the first child in the pool and the last one out. He is very much loved and supported by his peers.

 Ethan has struggled to learn to talk, but we are very blessed because he gives the best hugs. He is very generous with these hugs – sometimes forcing himself upon complete strangers – but in Ethan’s world he is just sharing the love. He often travels with a posse of his friends – Boris the teddy bear, Makka Pakka from In the Night Garden and Dorothy the Dinosaur from The Wiggles. This can sometimes make life interesting for me, since I have to keep track of all these extra people on outings, but their presence is very much non-negotiable. Despite having few words, Ethan always knows exactly what he wants and isn’t shy about making his feelings known!

 The special people in Ethan’s village

 Many people may be surprised to know how many different specialists are involved in Ethan’s recovery. Apart from the support of Dr Sharon and Dr Nick in neuro and oncology, Ethan also has support from PMH teams in areas such as dietetics, endocrinology, speech therapy, radiology, dentistry, physiotherapy, occupational therapy, orthotics, audiology, ophthalmology and music therapy. Apart from PMH, Ethan also has support from our family GP, the Fremantle Child Development Centre and the Disability Services Commission.

 The doctors, therapists and nurses who care for Ethan are the unsung heroes of our village – their dedication, often in very tough and emotional circumstances, deserves to be acknowledged. Through the pain, tears and difficult conversations has always been unwavering support, kind words, a few laughs at just the right moments and most of all – the promise of hope. Hope that things can and do get better.

 Strengthening this hope, not to mention keeping us sane, are our friends and family. Many of you are here tonight. Saying thank you doesn’t seem much in comparison to the endless amounts of love you give us. But we want you to know how much you all mean to us. The journey that Ethan is on is so gruelling, so never ending, that we appreciate simply your stamina in sticking by our sides. We also thank you for being so caring of Ethan, as we know that the unconditional love he gets from you all is the final piece of the puzzle in his recovery.

 Why supporting this scholarship means so much to us

 Supporting this scholarship means so much to us because we can’t do it alone. Brain cancer is not an easy disease to treat. The treatments currently on offer are brutally harsh, but necessary since the odds are poor. Survival in itself is balanced against crippling short and long term side effects.

 The reason we are so passionate about this research in particular is because it is the only way that the treatments can improve and one day lead to a cure. People like Dr Sharon, Dr Nick and now Dr Sasha need our support so that they can wake up every morning and find new ways to do what they do even better. To keep searching for a better way, a kinder way.  So the next child to be diagnosed with this devastating disease has a smoother path and a brighter future.

 To this end, there are some people and businesses I would like to thank for their support.

 This year we have been blessed with corporate supporters who share our ongoing vision for the scholarship, including Riverstone Construction, Thinking Hats, Bouncing Orange, Quick Colour Print Gosnells and Montgomery’s Hill Wines. Thank you so much for your generosity.

 We have also been thrilled to have strong support from our community fundraisers. These are our friends, family and colleagues who hold their own fundraising events to spread the word and bring in much needed funds. While time unfortunately does not permit me to thank each one individually, I would like to extend special thanks to John Wychowanko.

 John recently held A Day at the Races at Belmont Racecourse. He asked his friends and colleagues for donations, as well as holding a raffle and auction. John and his amazing network have raised $13,000 for the scholarship. This is an incredible effort by a very dedicated, caring person and his efforts just go to show what can be achieved. Thank you John!

 To conclude, I would like to take a moment to let you all know about tonight’s festivities. Firstly, we are selling tickets in our “spoil yourself” raffle – this raffle will be drawn tonight and has a number of wonderful prizes to be won which aim to pamper and delight. Secondly, we are holding an auction of the special items you can see here to my right. All of the raffle and auction items have been donated by supporters of the scholarship – which means that all of the funds we raise tonight go directly towards funding the scholarship for another year.

 Last but definitely not least – thank you all for making the effort to join us tonight. We are so thankful you are a part of Ethan’s village, and we invite you to enjoy the hospitality and each other’s company as we come together to celebrate Ethan’s journey.

Dr Nick Gottardo, Christie-Lee and Dr Sharon Lee at the 2013 major fundraiser.

Dr Nick Gottardo, Christie-Lee and Dr Sharon Lee at the 2013 major fundraiser.

My speech from last year’s fundraiser can still be accessed here.

Hello, is anyone home?

Hello there, it’s been a while!

Where have we been? Why haven’t we been putting substantive posts up on this blog?

We’ve been busy! It’s not that we don’t have lots to share with you (we do), but while things have been hectic we’ve been providing most of our updates via Facebook and twitter.

And one of the reasons we’ve been busy is our upcoming major annual fundraiser this Friday, 30 August 2013 at the Telethon Institute for Child Health Research, which we’re very excited about. I’m about to put up a sneak peek of the auction and raffle items for the night on this blog.

That’s life!

We have just heard that Ethan’s story is expected to feature in issue 24 of That’s Life! magazine, which should be on sale shortly. We are so excited to see our beautiful boy in print across Australia and to spread the word about the Scholarship.

If you have found your way here as a result of reading about Ethan in That’s Life!, you can read more about Ethan and his Scholarship on this blog. You can also follow his progress on the Scholarship’s Facebook page and twitter feed.

If you would like to make a donation to the Scholarship, you can do so online via this link. Donations are tax deductible. Alternatively, if you have other fundraising ideas or would like to sponsor the Scholarship on an ongoing basis, please contact Ashlie Hirniak at the Telethon Institute for Child Health Research (by phone on (08) 9489 7998 or via ahirniak@ichr.uwa.edu.au).

June update – Ethan in progress

Apologies for our delay in updating this site – we have been updating Ethan’s Facebook page regularly, but we appreciate that not everyone uses Facebook!

We recently returned from our first family holiday, a week stay in Busselton. While it was not exactly a quiet, relaxing holiday (how can it be with three kids 3 and under in tow?!?) it was just what we needed. A break from routine, no work for Shannon and no trips to PMH for me and Ethan. Family time and lots of fun seeing new sights.

Since we got back from our holiday, I have been trying to limit Ethan’s visits to PMH to one day a week. Some weeks we are at the hospital two or three times a week and, apart from the travel being very tiring, it is emotionally draining. Being at the hospital is a constant reminder of Ethan’s cancer, and also the suffering that children with health problems go through every day.

Last week Ethan had speech therapy, which he normally enjoys but not this time. He was very tired and out of sorts. We are trying to help him with his play skills and communication (as he only has a couple of words), but it’s not an easy process with a very determined and headstrong 3 year old 🙂 The very qualities which give him the strength to fight cancer are also the perfect ingredients for temper tantrums!! Never mind – we get there step by step, day by day.

This Thursday 6 June is Ethan’s scan day. He has an MRI every 3 months to look for any signs of the tumour returning. The days leading up to his scans are always a bit nerve racking, and the days after waiting for the results are also a bit uncomfortable – often referred to as “scanxiety” – it’s a very odd mix of emotions.

Last but not least…please save the date Friday 30 August for Ethan! We will be holding his annual fundraiser at the Telethon Institute for Child Health Research that evening…more details to follow. Stay tuned! 🙂

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Market stall

So, no sleep-in for me last Sunday – up in the dark at 4.30am (trying desperately not to wake any children) and then driving in with Christie-Lee’s dad Steve to wait in the queue for a market stall at Market City Community Market in Canning Vale.

Steve and I had packed his ute the night before and it was chockas (did I spell that right?). There was quite a wait outside the gates and we weren’t let in until about 6.30am. In the meantime, I was treated to Steve’s radio station of choice, Curtin FM, which I’ve since found out “caters mainly to a mature audience with musical tastes that favour the 50s, 60s and 70s”. I often say half-jokingly that I stopped listening to new music after the early 00s – I gather that Steve stopped listening to new music during one of the three decades mentioned above.

Setting up at the start of the day.

The markets open to the public at 7.00am, but we hadn’t even finished setting up before we were fielding interest (including from other stall holders) on some of the bigger-ticket items: an electric mower, a petrol line trimmer and edger, and some framed Green Day memorabilia (thanks Kinta!). It’s surprising what goes (e.g. old plastic food containers) and what doesn’t (e.g. an unopened beach cricket set).

Although we were on the outskirts of the market, we benefited from some of the traffic generated by the plant stall next door. The lady running the stall also walked over later in the morning and put a $10.00 donation straight into the collection tin, which was very kind.

We met a number of other generous people who paid above the asking price for items  – the only downside to that being that it meant taking more stuff home with us!

Running the stall was a lot of work – we weren’t allowed to pack up until the market closed at 1.00pm – but it meant another few hundred dollars in the kitty for the Scholarship (and a few extra spaces in my overflowing garage). Many thanks to the weather gods for not raining on us, to Ashlie Hirniak for providing the collection tins and printed materials, to Steve, Maureen and Kinta for donating items, to Steve for all his help both leading up to and on the day, and (most of all) to my lovely wife Christie-Lee for holding the fort against the three under-threes for most of her Sunday.

Foot patches, going cheap.

Foot pads, going cheap.

The end of a long morning.

The end of a long morning.

 

 

 

 

 

 

 

Update: I’ve just been told that our efforts raised $362.75 – every little bit counts!