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

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!

Ethan’s first week at kindy

Last week was Ethan’s first week at kindy.

Starting kindy has been a major long term goal for all of those involved in Ethan’s treatment and recovery. For kids with any type of cancer and particularly those with brain cancer, becoming well enough and (staying well for long enough) to start kindy is not something you take for granted.

Ethan has a place in an education support classroom at our local primary school. There are only a handful of kids in the class and they are all well supported by a teacher and several aides. The classroom is specially tailored to cater for their needs with an ensuite bathroom and kitchen. The curriculum is amazing – apart from covering the essential skils like writing, reading and mathematics, Ethan will enjoy activities such as cooking class, swimming lessons and gymnastics.

The first day was a bit tough for Ethan – he had Boris by his side, but he was a bit teary and unsettled on his first ever day apart from Mum and Dad. Still, he did get excited to participate in some activities and we hear he did some excellent painting at the easel. The second day was a lot better – he was a lot more settled and did very well sitting at his desk and partcipating in the activities on offer.

The hardest part for Shannon was watching him go at drop off…the hardest part for me was seeing his little face at pick up and tearing up as he wrapped his little arms around me!

We would like to extend our heartfelt thanks to the team at PMH (particularly oncology and speech therapy) and Ethan’s therapists at both Fremantle Child Development Services and Rocky Bay for all their help with preparing Ethan and completing a massive amount of assessments and paperwork to make it all possible.

We would also like to say thank you to our family and friends for their love and support on the journey so far. We are so thrilled to share this milestone with you all.

And lastly a little word for those incredibly dedicated doctors, nurses and therapists who cared for Ethan when he was really sick, without whom Ethan would never have got this far…please keep doing what you are doing. Sometimes you must feel like it’s a losing battle, but you are making a difference. And we are eternally grateful – please enjoy this moment with us xxx

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Ethan’s swimming

Swimming is a big part of Ethan’s life. He first started swimming classes with me when he was 5 months old…but he had to take a year off when he was diagnosed.

Ethan started swimming classes again at the start of last year. He spent the year building his skills and confidence in the parent and baby classes.

Today he had his first “independent” (no parent in the pool with him) class. He did amazingly well – he was obedient (for the most part lol!) and participated to the best of his ability. It would be so easy to underestimate him…when he is actually capable of a great deal more!

Good on you buddy…you did us proud!

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