Thursday, May 06, 2010


This is the eulogy that Jo and I delivered on Tuesday for Ethan


It was the beginning of January 2002 and we were expecting our 2nd child. Like all young couples we hadn't a care in the world, so with Jo 38 weeks pregnant, we set off camping on the New South Wales side of the Murray River. The biggest concern at the time was that if Jo went into labour, we'd have to float her across to the Victoria side to give birth. We didn't want a NSW baby!

Fortunately, there were no surprises camping and on January 16th 2002, Ethan James Hanley came into this world, quickly and with no fuss. Weighing in at a good 8lb 1oz and 51.5cm long, everything was great. The early days were spent feeding and changing nappies while running after a very active big sister, Erin, who was 19months.

Little did we know that our beautiful son had been dealt a bad hand. In August that year his little life changed. He was diagnosed with congenital cyanotic heart disease and the surgical plans were laid out in front of us. A series of 4 different procedures. The first of these operations took place 2 months later. The operation went for 13.5 hours and he suffered some post op complications. Ethan had to be reopened and drained and then he picked up a urine infection which subsequently led to a kidney reflux diagnosis. During this time we were informed Ethan had Di George Syndrome and to have genetic testing before we planned any more children. This is when we announced that we were already pregnant with number 3. We're not sure if the grandparents have gotten over this yet?!

In April 2003, Adele was born, a younger sister to boss around. 3 kids under 3, and the prospect of Ethan needing another operation. We needed a holiday, we managed to get to Cairns before Ethan's 2nd operation in October. This time no complications and in true Ethan spirit, he was out of ICU and up bouncing on the ward after a day. Truly amazing.

In May 2004, Cardiac wise, Eth was good. There was no signs he'd need surgery until he was at least 5-10 years old. Time to get on and live life. But then another blow. This time kidney cancer. Dr Peter Downie and Monash Medical Centre entered our lives. This is where we would call home for the next 7 months. Firstly Ethan had his kidney removed and then chemotherapy and radiotherapy followed. Ethan managed to get every side effect possible, our longest stay at home was 3 days but Eth didn't mind. He was amazingly strong and always happy. We learnt a lot from him during this time. Challenge also entered our lives at this point. Their constant support on the ward and to this day is truly appreciated. One of the biggest complications for Ethan was the loss of appetite. Already a petite little boy, a nasogastric tube was inserted. This didn't stop him. He would load up a girls pram with the bits and pieces and off he'd go.

Ethan was recovering well from cancer when he was dealt another blow. In August 2005, he was diagnosed with aspiration pneumonia and all drinks would now need to be made as thick as honey. This was hard at the start, we had to hide all liquid as Ethan would find them and start sculling. He was even caught scooping water out of the toilet bowl to get some fluid. He was very determined and stubborn, but like all of his treatments he soon learnt to accept and move on. Ethan was also showing more signs of cardiac trouble, he was bluer. This was the trend before all operations. At the end of 2006 we were told there's nothing else that could be done. He was too high a risk for a heart/lung transplant. He would eventually outgrow his heart and lungs. A fundraiser was organised and the money raised helped us spend some valuable time with Ethan, for this we are grateful.

In July 2007 we were given another scare. Ethan had began having seizures. This was due to lower oxygen levels. Things had deteriorated with his heart. It was hard seeing him struggle knowing there was nothing that could be done. In October that year, Ethan was offered a 3rd and final operation. A palliative procedure with high risks. If all went well it was going to prolong life and give us a bit of extra time. We grabbed it by the horns. This was another major operation that Ethan came through with no fuss. But, 6 months later, in April 2008, things were bad again. Ethan couldn't eat or walk. Another dark cloud loomed over us. We were given the option of starting a trial drug that potentially could make things worse. We had nothing to lose, Ethan was already struggling and the road ahead was dark. So Sildenafil was started. This gave Ethan a new lease on life. The effects it had were unbelievable. He went from not being able to walk to running. We knew this drug was a symptom manager and the underlying condition was still progressing, but we enjoyed every minute. We had our longest break from hospital admissions, 11 months. It wasn't until July 2009 that Ethan was back in hospital. This time he had started coughing blood. It would be from this point that Ethan's condition would fully take over our lives.

In amongst all these medical admissions and down periods we had many ups. Holidays were a major part of Ethan's life. They had to be strategically planned but we endeavoured to give our little family the greatest memories. These started with our first trip to Cairns. It would be on this holiday that Ethan would learn to walk. He saw his first test match and his love for cricket started. In February 2005, after cancer treatment, we loaded the car and headed in the direction of Pambula. We had no accommodation booked but we had to go, we needed a break. A lot of time was spent running around playgrounds and in animal parks. In May 2006, the Gold coast was calling. Challenge came to our aide and we had a great week in their holiday house. Ethan enjoyed Australia Zoo and the theme Parks. March 2007 saw us for the first time needing passports. Travel insurance for Ethan was minimal covering broken bones only, but this wouldn't stop us. The end of 2007 Ethan was granted a wish. He wished to sleep on a train. This meant a flight to Adelaide and the Indian Pacific train to Perth. This was a very exciting holiday based around Ethan and the things he loved. It was truly amazing to have such an experience as a family. In July 2008 we had our one and only snow trip. It was cold and wet and surprisingly the only holiday where Ethan didn't get some sort of fever and needed medical intervention! January 2009 we went to Merimbula. He hooned around the caravan Park on his bike non stop and went mountain biking for the first time. Camping at Easter in Gippsland with Nanny Heather and Poppy Syd was also thoroughly enjoyed for a couple of years. None of us will ever forget him darting out the tent after a couple of drops of rain, asking to go fishing.

Being sick enabled Ethan to be involved in many organisations. His favourites were Very Special Kids, Challenge and Camp Quality. Ethan went on many camps and outings with these groups. He always came back exhausted, but had a ball. We will always be thankful to them for helping Ethan live life to the fullest.

Ethan was a true boy. We often wonder if he didn't have all these problems, how much go he would have had. He was like a bull at a gate and therefore quite accident prone. During an admission at the Childrens hospital he didn't want to stay in the cot. Whilst outside the room, getting permission for an outing, we heard an almighty thud. Ethan was found picking himself up off the floor. He had managed to stand up and climb out! There's other stories of him being strapped into the high chair but managing to free himself and hit the deck. During chemo at Monash, he was jumping on the bed and fell. He landed on the IV pole and ended up needing his eyelid glued. He fell and split his head in the shower. He has had numerous black eyes and bruises. For 2 days we didn't know he had a broken arm. His pain threshold was amazingly high and we knew if he asked to go to hospital, something really was wrong. He was ambidextrous. He could bat left or right handed, ride a skateboard goofy or regular and kick a footy with both feet. This helped during treatment because no matter what arm he had a drip in, he could use the other one with out complaining.

In 2006 Ethan started kinder. He made lots of friends and it set him up for school, which he started the following year at Glenallen. It would be from here that his love of technology would bloom. Anything electronic, Ethan could do. He was a gun on the PS3 and could beat the best, well he was the best. He loved playing Spyro. He played it till the credits rolled. He loved computers. He could get himself around Google Earth with ease and he loved searching You Tube. He even demanded his train track set ups be videoed and uploaded. He was road mad and could direct using route numbers. He will be remembered for his love of Eastlink. He loved dragons, volcanoes and pirates. He loved learning about the Solar system at school and it wasn't long until this passion entered our home. He would bombard people over their favourite planet, bagging anyone who didn't know Pluto wasn't a planet! Ethan loved school and we loved knowing that once he left on the bus, everyone at Glenallen cared and loved him as much we did.

Over the years Ethan has had a passion for football. He could sing every AFL club's theme song. He changed teams a lot, but in the end Geelong and Essendon were his favourites. He always hung it on Hawthorn and Carlton supporters. We can still hear him saying 'Ha Ha' and losers about last Saturday's game. He also had a soft spot for Yarragon and his number 9 mate.

Ethan loved going to the movies and watching DVDs. Every school holidays Ethan would go to Village. He loved it. DVDs were always playing (if the PS3 and computers were off) He loved Cars, Toy Story, Finding Nemo, The Incredibles, Madagascar, Ice Age, Shrek, Kung Fu Panda and Star Wars. He would put them on and fast forward to the funny bits, much to the frustration of any one watching with him.

Ethan was very cheeky. He loved giving everyone a pat on the bottom and then giggling. Everyone will remember his bottom dance which started from his love of Homer. He loved the tricks 'give me 5, to the side', 'pull my finger', and 'Shh, don't tell mum'. Ethan was also very loving and caring and let people into his life with open arms. He loved animals and little kids. He had a terrific sense of humour and an infectious smile.

From July 2009, things changed. We had been planning an Around Australia trip but we had left our run too late. Ethan was too sick to travel. Things were on a downward spiral and we couldn't stop them. He had so much happening in his little body. He fought this off as much as possible but in February, he couldn't fight on with out help. He was in a lot of pain. We went to Monash and subsequently ended up back at home with a syringe driver and daily palliative care visits. Early on we had conversations in which Ethan admitted he was dying and told me to call people to visit. After he got the formalities of saying goodbye to everyone, he got on with fighting as hard as he could. As time passed, he told me he wasn't sick. When I reminded him of the early conversations he said he was better now and not to worry, 'I'm not sick'. Ethan was no hyperchondriac. He didn't like showing people he was sick. We've had many days where he would be blue and struggling and someone would see him and he'd sit up like Jackie and pretend all was good. He didn't want people fussing over him or treating him like a sick boy. This was his attitude to the end. Ethan peacefully passed away in his sleep on the 28th April.

The girls also courageously got up on stage and said the following

We miss you Ethan. You have been a great brother to us. It is sad to say goodbye.

Your bravery will not be forgotten
Love Erin and Adele

We will put up Ethan's school teachers words as well, very soon.


Anonymous said...

Thank You for posting this.
Catherine Brittain

Anonymous said...

It was nice to read this again. Your words are beautiful. All of you are amazing and I wish you all the love in your journey forward. Thanks for the chance to be a small part of your lives and to know your gorgeous boy Ethan. All my love Sandra Broadbent xxxx

Anonymous said...

I think you are all truely amazing, you did so well on the day.
I also thank you for posting these words, they are beautiful and full of love for a gorgeous boy.
Janelle Kremer xoxo

Sal Murgana said...

Luke and Jo you are both so incredibly brave and strong. The Eulogy you wrote for Ethan was simply perfect.

Love always, Sal xxxx

Anonymous said...

you are two strong people. to get up and say that in front of everyone takes a lot of courage.
all the best