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.
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.