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).

Twitter feed

We now have a twitter feed for the Scholarship!

We’ll still be regularly updating this blog and the Scholarship’s Facebook page – the twitter feed will be used more for bite-sized news morsels (including relevant tweets by others in the twittersphere). Our twitter handle is @edscholarship.

You should also be able to see our twitter feed on the home page for this blog (either on the left or at the bottom, depending on what device you’re browsing on).

Random acts of kindness #1

“The centre of human nature is rooted in ten thousand ordinary acts of kindness that define our days.”
– Stephen Jay Gould

Since Ethan was diagnosed with ependymoma in January last year, Christie-Lee and I have been overwhelmed by the kindness and generosity of our family and friends – and in some cases of complete strangers – who have been touched by Ethan’s story.

This is the first of, hopefully, many semi-regular posts on the acts of kindness which have, in a number of different ways, brought a little bit of sunshine into our lives at a time when things have been pretty tough.

So here’s the first one.

Back in the days before Ethan was diagnosed, at a time when Christie-Lee and I still pored over books and government-issued pamphlets on how best to maximise our child’s potential, and agonised about developmental milestones, Ethan’s favourite thing to do at the end of the day was watch his (at the time, one and only) Wiggles DVD.

Allowing your not-quite-two-year-old to watch DVDs for any length of time is, of course, contary to everything the literature says and not something that Responsible Parents do. However, whether by reason of the subliminal messages embedded within “Toot Toot, Chugga Chugga, Big Red Car”, or just seeing the enraptured delight on Ethan’s face while he watched the DVD, we rationalised that an hour at the end of the day wasn’t too bad.

Eventually, of course, Ethan’s interest in the Wiggles developed into a full-blown fixation. We started accumulating Wiggles merchandise, and learning the songs. (It’s Greg over Sam for me, and does anyone else think that Henry the Octopus sounds like Julia Gillard?)

I often wonder what the me of 10 years ago would have thought of the daddy-me doing all the actions to such Wiggles classics as “Rock-A-Bye Your Bear” and “Can You Point Your Fingers and Do the Twist?”.

Christmas 2011 with Ethan - just before diagnosis.

Christmas 2011 with Ethan – just before diagnosis.

Of course in retrospect our earlier concerns about over-exposing Ethan to the idiot box were entirely irrelevant: for the first few months of last year, Ethan spent countless hours immobile in a cot at PMH (either because he had an EVD in and had to remain still, or because he was too weak or sedated following his major surgery to move) watching Wiggles DVDs.

I will always be grateful to The Wiggles for their capacity to make my son smile (even on the worst days), and I remember the happiness I felt every time Ethan attempted a dance manoeuvre (albeit lying down).

After we decided to establish the Scholarship, my mum asked the Wiggles whether they would donate any auction items for the official launch in September last year, and Anthony, Greg, Jeff and Murray were kind enough to donate a signed shirt.

Ron Farris auctions off a Wiggles shirt signed by Anthony, Greg, Jeff and Murray.

Ron Farris auctions off a Wiggles shirt signed by Anthony, Greg, Jeff and Murray.

Of course, I desperately wanted the shirt for Ethan. But it was there to raise funds for the Scholarship. I was worried that if I placed a bid for it then nobody would want to bid against me and, to be honest, at the time it wasn’t in our budget. I remember when the shirt was being auctioned at the launch, my dad was offering to go halves with me – but I let it go. At the time I didn’t even know who had bought it – only that it went for about $600.

You can’t imagine how shocked and overwhelmed Christie-Lee and I were when, at the end of the launch, Stuart and Susan Buckby gifted the shirt to Ethan. Stuart and I had played a bit of cricket together at Leeming Spartan. I’ve only seen him occasionally in recent years and I had no expectation that he would even come on the night. Stuart and Susan’s generosity was a real highlight of the launch, and meant a lot to us as a family. And it is a great example of the many acts of kindness which have touched us during Ethan’s journey, and made our journey with him just a little more bearable.

(At this point I’d also like to extend a plug to Stuart’s civil engineering business, Buckby Contracting, which has been a sponsor of both the Leeming Spartan Cricket Club and the Bull Creek-Leeming Junior Football Club. If you need the types of services that Stuart can supply, please look the business up – the sustainability of the Scholarship relies in part on you supporting the people and businesses who support us.)

As I’m wrapping up this post, Ethan is in the living room having his lunch NG feed. I let him choose which DVD he wanted to watch for the hour it takes to finish the feed. He chose “Getting Strong”, and that’s basically a summary of Ethan’s progress since he finished treatment. It is my dearest wish that that progress continues (fingers crossed for the results of last Thursday’s quarterly MRI scan).

And Ethan still very much loves the Wiggles…

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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