A belated report

Last year’s major fundraiser was held at the Telethon Kids Institute on the evening of 26 September 2014. Thanks to our supporters, it was another great success, raising over $20,000.00 for the Ethan Davies Scholarship for Brain Cancer Research.

Highlights of the night included a presentation from the inaugural recipient of Ethan’s Scholarship, Dr Sasha Rogers, and tours of the brain tumour laboratories hosted by members of the Telethon Kids brain tumour research team.

Below you’ll find part of the welcoming address that Christie-Lee and I gave on the night, together with some photos that have kindly been provided by Telethon Kids.

Shannon: Thank you so much for joining us on this special evening. Another year has gone by and we are thrilled to be able to take this opportunity to give you an update on where things are at with Ethan’s progress and the Ethan Davies Scholarship for Brain Cancer Research.

When we launched the Scholarship back in 2012, Ethan had only just turned 2 and had just finished his treatment. He was very sick and was about to embark on some arduous therapy to try and put his battered body and mind back together again.

As many of you have witnessed, Ethan has worked very hard over the last 2 years. He is a magical work in progress as we watch his brain and body heal and transform. Every day he learns something new, takes a tiny step in the right direction. With his trademark crooked smile and Boris tucked under one arm, Ethan is growing into a young man.

Christie-Lee: As we rejoice in Ethan’s progress, so too we face the harsh reality of his survival. It is a cruel irony that with every clear scan, so the threat of the cancer returning remains. There doesn’t seem to be much rhyme or reason as to why some are taken and others spared.

Through it all, the Scholarship offers us hope. Hope that we can find those answers, hope that the treatments won’t be so deadly, and hope that maybe our little boy will be one of the lucky ones because we have come together as a community and taken positive action to make it happen.

Above all else – tonight is a celebration. The Scholarship has raised over $300,000 in two years. Funds that will actually pay for the research that Ethan needs to be done. Each and every one of you has played a part in achieving this amazing result so far, and we want to thank you so much. We urge you to enjoy yourself tonight knowing that you personally have done something very valuable for your community.

We would like to make special mention of our major partners: the Telethon Kids Institute, Harcourts Central, Riverstone Custom Homes, Thinking Hats, Solomon Brothers and Bouncing Orange. The success of the Scholarship depends upon the support of our partners and we cannot thank you enough for your generous contributions.

We are very grateful to everyone at Telethon Kids for their help in getting the event together. A big thankyou also to Stuart Burling of Ron Farris Real Estate for stepping in as our auctioneer at short notice, and to our many auction and raffle item donors: Steve Morton, Emelie Coffey, Maureen Taylor, Be Beau, Blue Sky Media, Kieran Longbottom, Envy Jewellery, Joe and Grace Ricciardo, the Australian Swim Team, Dale and Debbie Putland, Jason Cunningham, Perth Heat, Anthony and Lisa Lees, Ross Taylor, The Bling Garage, Clint Baker Photography, The Gate Bar and Bistro, Travel Associates Australia, Cute n Cheap Clothing, Glow Wiks Candles, Pharmacy 777 Langford, Dorothy Farrington, Getaway Outdoors Kelmscott, Crown Perth, Cockburn Ice Arena, Lorraine Lea, Methven and Alexandra Nullmeyers.

Off-treatment and being “well”

One of the things that people may not be aware of is just how much ongoing care a child with cancer requires, even when “well” and “off-treatment”. Ethan has complex, ongoing care coordinated through many departments at PMH.

Yesterday Ethan had an appointment in endocrinology, to assess his growth and hormone function. Unfortunately, the radiation that Ethan received to his brain may have damaged his pituitary gland, hypothalamus etc so routine surveillance is conducted to see how his hormone levels are. This means blood tests every 6 months. So far all his blood tests have been clear, and his growth has been good – although it may be starting to slow a bit now.

After his appointment with the endocrinologist, Ethan needed to have a blood test so off we went to get it done. He is such a superstar! It took over an hour of waiting before we got in (which he did with no complaint) and then when we went in he just sat in my lap while I held his arm and other hand. He watched the needle go in and the blood be taken – no crying, no fuss – cool as a cucumber and then took his sticker for Boris!

I must admit that it’s pretty embarrassing when your child handles a blood test better than you do!

Then we had a quick bite of lunch (Ethan refused to eat the hospital custard … it’s possible that the custard upset him more than the blood test), and then the race back to the car before the parking ticket ran out.

Very proud of my little man and hoping for good blood test results.

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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The downhill run…

We are on the downhill run of Ethan’s radiation treatment. We have done 23 treatments, with 10 to go – so 33 in total. This means 10 more days of treatment – since it is done every weekday, Monday to Friday, basically 2 weeks to go!

Ethan is well enough to be an outpatient receiving his treatment, so he doesn’t have to stay in hospital. So every weekday morning we walk next door to Peter Mac (we are staying at hospital apartments next door) just before 8:30am. I buy a hot chocolate on the way in (thank you to my barista friend who has it hot and waiting for me as soon as he sees me each day!) and we head down to Lower Ground 2 where all the radiation therapy (adults and children) is done.

We check in with Anne and Bec at reception, have a chat and check Ethan’s appointment schedule. Then we wait in the children’s waiting room. Ethan used to play on the jungle gym and with the ride on car, but now he has decided he’s too old for all that! He is all business like as he waits in his pram for the anaesthetist. Within minutes an anaesthetist from the Royal Children’s Hospital comes out to see us (kids have

 to have their anaesthetics done by RCH paediatric anaesthetists) and checks that Ethan is all well and ok to go into treatment. Then they give us the nod and either Shannon or Nana (depending who is here) carry Ethan in to the treatment room (I do the recovery bit!).

Apparently Ethan is, once again, very business like in his approach and he likes to administer his own anaesthetic (strawberry is his preferred flavour). He helps hold the mask to his face and breathes in as he drifts off to sleep (Boris the teddy bear also goes to sleep). Then the team take over and administer the radiation via the machine (very big and scary looking!). We then wait in the adults waiting room until he comes through to recovery.

Once Ethan is close to waking, the recovery nurse collects me and I tickle his tummy until he wakes up. He usually likes to have a big stretch, then wants to get into his pram ASAP so he can leave! And three times a week he has music therapy afterwards – he likes this very much.

The whole process every day is painless, stress free and Ethan doesn’t seem too bothered by it all. In fact, he tries to convince us to go in on Saturdays (I think he is a creature of habit)! The best way to describe it is like groundhog day…it’s like living the same day over and over again. But not in a bad way – for every day brings us closer to the end and going back to Perth!!

Ethan in the waiting room at Peter Mac

Ethan in the waiting room at Peter Mac.