Saturday, April 28, 2012
2 years today
It's 2 years today since Ethan passed. Although life trundles along with a different type of normality, we miss him and think of him always. It's usually a 'Ethan would have loved that movie' or 'You think Ethan would know the GWS theme song yet?' words that are spoken. Jo especially misses the pure devotion and loyalty that Ethan displayed toward her.
Sunday, August 01, 2010
Landscaping Project
Many of you may be aware of the 'The Hanley Family Project' group on Facebook. This group was set up and organised by some great friends and family as a surprise to have some much needed landscaping. As well as managing the Facebook group they continue to contact businesses, fund raise, and labour to help implement this plan.
We have had a few months of mud, slush, no fence and no dogs but we are now happy to report we have some landscaping to show all their hard work. Over the next few weeks we will hopefully continue to see results of their efforts. We are one step closer to trying to get some sort of routine and life as a family of 4.
We would like to thank everyone involved. We know there have been many ups and downs with fundraising and businesses etc but we are truly appreciative and we look forward to sharing our backyard with you all when it's finished.
The Hanley Family Project Facebook Group
Landscaping Photo's
We have had a few months of mud, slush, no fence and no dogs but we are now happy to report we have some landscaping to show all their hard work. Over the next few weeks we will hopefully continue to see results of their efforts. We are one step closer to trying to get some sort of routine and life as a family of 4.
We would like to thank everyone involved. We know there have been many ups and downs with fundraising and businesses etc but we are truly appreciative and we look forward to sharing our backyard with you all when it's finished.
The Hanley Family Project Facebook Group
Landscaping Photo's
Tuesday, June 29, 2010
Thank You
We would like to thank everyone for their support over the last 2 months. Thanks to everyone who donated to Challenge, and sent us cards etc. Ethan certainly touched the hearts of many.
Don't think of him as gone away-
His journey's just begun;
Life holds so many facets-
This earth is only one.
Just think of him as resting
From the sorrow and the tears
In a place of warmth and comfort
Where there are no days and years.
Think how he must be wishing
That we could know today,
How nothing but our sadness
Can really pass away.
And think of him as living
In the hearts of those he touched
For nothing loved is ever lost
And Ethan was loved so much.
Thanks for the ongoing support through this difficult time.
Don't think of him as gone away-
His journey's just begun;
Life holds so many facets-
This earth is only one.
Just think of him as resting
From the sorrow and the tears
In a place of warmth and comfort
Where there are no days and years.
Think how he must be wishing
That we could know today,
How nothing but our sadness
Can really pass away.
And think of him as living
In the hearts of those he touched
For nothing loved is ever lost
And Ethan was loved so much.
Thanks for the ongoing support through this difficult time.
Saturday, May 08, 2010
Slideshow tribute
This is the video slideshow we ran at the funeral service. It's not a perfect upload but it is pretty close to the original.
http://vimeo.com/11568987
http://vimeo.com/11568987
Thursday, May 06, 2010
Jennifer and Mary's words
Ethan's teachers gave a great tribute to him on Tuesday.
----
Jennifer
My name is Jennifer Healey and this is Mary Torpy. We have been Ethan’s teachers for a couple of years and have enjoyed the privilege of sharing in his education and in his life.
Mary
Ethan has been a student at Glenallen School in Glen Waverley since 2007. When Ethan first arrived at school, he was a little ball of energetic personality plus. Andrea Robertson taught him in his prep year and speaks fondly of his kindness and his gentleness. A particular friend was Erin and he would talk about his two Erins – one at home and one at school. He had an amazing relationship with the students and staff at Glenallen from Primary to Senior. His caring and loving nature came to the fore with students in wheelchairs and his boisterous energy was displayed when running around with his mates, driving the play cars in Grand Prix style or having light sabre battles. What we saw in this young man was a strong desire to communicate. He was a real people person with a highly developed sense of fun and humour. He always had something to say using words, signs, communication book or his favourite – his Palm top. He was so keen to communicate that he often devised his own signs and gestures. He also had a persistent way of getting information put on to his Palm top so that he could chat with others.
Jennifer
He often entertained the class with his communication device. “Go away”, “I’m not a child” and “shut up” would often be heard. Something I lived to regret was showing him how to say multiple words in one sentence with his Palm top, such as East Link, East Link, East Link, East Link, East Link …….. Jennifer, Mary, Jennifer, Mary, Jennifer, Mary ……….., Pizza, Pizza, Pizza...............
Ethan’s class mates had lots of words and thoughts to describe their friend. These included cheeky, forever entertaining others with his “bottom dance”, and bottom smacks, burping all the time, greeting people with a lovely “back tickle” or “head rub”, Essendon Footy Club, Yarragon Footy Club, sticking his tongue out and wiggling it at everyone and calling all and sundry either a “looser” or “crazy” when they did anything that was remotely funny. In the early years, it was all about Thomas the Tank, but this developed into Ben 10, Star Wars, Ben 10 and Kung Fu Panda. He was always The Crane. Throw in the other interests that all young boys have and Ethan was one of the gang.
Mary
Ethan had a skill of wiggling his way into our laps without us noticing he had even left his seat. All of the other students were very accepting of it. Ethan’s signature head rub differed between staff and his friends. The students’ heads were rubbed gently and kindly complete with eye contact and a soothing chat. In contrast, staff had their hair completely and firmly messed up with an accompanying “Ah ha”. In addition to a head rub, a bottom would be smacked. The adults were usually the lucky ones to receive this show of affection.
Ethan’s knowledge and understanding of technology was amazing and when the White Board was in use in classroom time, he was hooked. As long as his reading sessions involved the computer, it was OK. He loved using his PSP and he was enthused by Google Earth and Google Maps. Ethan learnt all the football songs from UTube and loved the footy banter and teasing when your team lost. When we studied Space last year, Ethan became a devotee. His room at home began to look like outer Space. Anything remotely associated with this topic kept his spirits high and engaged.
Jennifer
Transport, Eastlink and Freeways were another love. The way he could tell you the names of all the major freeways in Melbourne and how to get to them! He insisted every freeway and major road from the MS in Sydney to Eastlink in Melbourne was written in his book and recorded on his Palmtop. Ethan told me which roads and freeways I had to take to drive to Phillip Island. When Jo checked on his GPS, he was right!
Ethan gained a lot of pleasure from attending our two class camps. He slept in the “big boys” room and kept up with a very busy and tiring schedule. He devised his own expressions and signs for experiences and events such as the tractor train to Point Nepean, the tunnels and the Ferry to Queenscliff. All around the camp ground “enifa, enifa, enifa” was heard. Ethan was extremely good at twisting others around his little finger to do whatever he wanted. At Point Nepean, there were 100 steps that some of the students were climbing and of course Ethan wanted to go up. So up on my back goes Ethan and we climb. I then had to go back down and collect the wheelchair and drag it up the 100 steps. Ethan was quite pleased with himself.
Mary
You had to keep life upbeat and high. He wouldn’t be left out of anything. “No”, I don’t want to use the wheelchair in the P/E session, “No”, I don’t need any oxygen to get me through lunchtime, “No”, I want my wild turn like everyone else on the cars, “No”, I’ve rested long enough on the bean bags!
Ethan had a bottomless treasure trove, but with some definite favourites - his PSP, light sabre, DVD player, footy stuff and Ben 10. These treasures were regular features in his day. The problem was collecting them all at the end of the day!
His was a short life crowded with richness, with positive experiences that come from belonging to an active, loving and balanced family and from his involvement in a nurturing school programme. In his family, Ethan lived life to the fullest – camping, bike riding, bussing to school, school discos, being a member of a wide extended family, birthday parties, weddings – never missing out on anything.
Jennifer
Ethan’s love for his family was enormous. He would only write “love’ on a card if it was for his Mum, Dad, Erin or Adele. Everyone else got “from”. To see his face light up when Jo or Luke came to school or when showing Erin and Adele the racing cars and how to ride them fast (the only speed he knew) reflected the deep feelings he had for his family.
One of the students felt that if the tooth fairy granted us a wish, we could wish for wings
so we could fly to see him. But we can see him in our hearts, and our memories are all ones that make us smile.
We would like to thank you for entrusting Ethan to our care. It was an honour to be a part of his life. He wove his way into all our hearts and the hearts of many others. His presence will be greatly missed. Ethan’s signature was his bottom wiggle. This endearing dance will be held in the memories of many forever. Ethan taught us how to live and love life – Remember Him - Do a bottom dance and smile!
Jennifer and Mary
----
Jennifer
My name is Jennifer Healey and this is Mary Torpy. We have been Ethan’s teachers for a couple of years and have enjoyed the privilege of sharing in his education and in his life.
Mary
Ethan has been a student at Glenallen School in Glen Waverley since 2007. When Ethan first arrived at school, he was a little ball of energetic personality plus. Andrea Robertson taught him in his prep year and speaks fondly of his kindness and his gentleness. A particular friend was Erin and he would talk about his two Erins – one at home and one at school. He had an amazing relationship with the students and staff at Glenallen from Primary to Senior. His caring and loving nature came to the fore with students in wheelchairs and his boisterous energy was displayed when running around with his mates, driving the play cars in Grand Prix style or having light sabre battles. What we saw in this young man was a strong desire to communicate. He was a real people person with a highly developed sense of fun and humour. He always had something to say using words, signs, communication book or his favourite – his Palm top. He was so keen to communicate that he often devised his own signs and gestures. He also had a persistent way of getting information put on to his Palm top so that he could chat with others.
Jennifer
He often entertained the class with his communication device. “Go away”, “I’m not a child” and “shut up” would often be heard. Something I lived to regret was showing him how to say multiple words in one sentence with his Palm top, such as East Link, East Link, East Link, East Link, East Link …….. Jennifer, Mary, Jennifer, Mary, Jennifer, Mary ……….., Pizza, Pizza, Pizza...............
Ethan’s class mates had lots of words and thoughts to describe their friend. These included cheeky, forever entertaining others with his “bottom dance”, and bottom smacks, burping all the time, greeting people with a lovely “back tickle” or “head rub”, Essendon Footy Club, Yarragon Footy Club, sticking his tongue out and wiggling it at everyone and calling all and sundry either a “looser” or “crazy” when they did anything that was remotely funny. In the early years, it was all about Thomas the Tank, but this developed into Ben 10, Star Wars, Ben 10 and Kung Fu Panda. He was always The Crane. Throw in the other interests that all young boys have and Ethan was one of the gang.
Mary
Ethan had a skill of wiggling his way into our laps without us noticing he had even left his seat. All of the other students were very accepting of it. Ethan’s signature head rub differed between staff and his friends. The students’ heads were rubbed gently and kindly complete with eye contact and a soothing chat. In contrast, staff had their hair completely and firmly messed up with an accompanying “Ah ha”. In addition to a head rub, a bottom would be smacked. The adults were usually the lucky ones to receive this show of affection.
Ethan’s knowledge and understanding of technology was amazing and when the White Board was in use in classroom time, he was hooked. As long as his reading sessions involved the computer, it was OK. He loved using his PSP and he was enthused by Google Earth and Google Maps. Ethan learnt all the football songs from UTube and loved the footy banter and teasing when your team lost. When we studied Space last year, Ethan became a devotee. His room at home began to look like outer Space. Anything remotely associated with this topic kept his spirits high and engaged.
Jennifer
Transport, Eastlink and Freeways were another love. The way he could tell you the names of all the major freeways in Melbourne and how to get to them! He insisted every freeway and major road from the MS in Sydney to Eastlink in Melbourne was written in his book and recorded on his Palmtop. Ethan told me which roads and freeways I had to take to drive to Phillip Island. When Jo checked on his GPS, he was right!
Ethan gained a lot of pleasure from attending our two class camps. He slept in the “big boys” room and kept up with a very busy and tiring schedule. He devised his own expressions and signs for experiences and events such as the tractor train to Point Nepean, the tunnels and the Ferry to Queenscliff. All around the camp ground “enifa, enifa, enifa” was heard. Ethan was extremely good at twisting others around his little finger to do whatever he wanted. At Point Nepean, there were 100 steps that some of the students were climbing and of course Ethan wanted to go up. So up on my back goes Ethan and we climb. I then had to go back down and collect the wheelchair and drag it up the 100 steps. Ethan was quite pleased with himself.
Mary
You had to keep life upbeat and high. He wouldn’t be left out of anything. “No”, I don’t want to use the wheelchair in the P/E session, “No”, I don’t need any oxygen to get me through lunchtime, “No”, I want my wild turn like everyone else on the cars, “No”, I’ve rested long enough on the bean bags!
Ethan had a bottomless treasure trove, but with some definite favourites - his PSP, light sabre, DVD player, footy stuff and Ben 10. These treasures were regular features in his day. The problem was collecting them all at the end of the day!
His was a short life crowded with richness, with positive experiences that come from belonging to an active, loving and balanced family and from his involvement in a nurturing school programme. In his family, Ethan lived life to the fullest – camping, bike riding, bussing to school, school discos, being a member of a wide extended family, birthday parties, weddings – never missing out on anything.
Jennifer
Ethan’s love for his family was enormous. He would only write “love’ on a card if it was for his Mum, Dad, Erin or Adele. Everyone else got “from”. To see his face light up when Jo or Luke came to school or when showing Erin and Adele the racing cars and how to ride them fast (the only speed he knew) reflected the deep feelings he had for his family.
One of the students felt that if the tooth fairy granted us a wish, we could wish for wings
so we could fly to see him. But we can see him in our hearts, and our memories are all ones that make us smile.
We would like to thank you for entrusting Ethan to our care. It was an honour to be a part of his life. He wove his way into all our hearts and the hearts of many others. His presence will be greatly missed. Ethan’s signature was his bottom wiggle. This endearing dance will be held in the memories of many forever. Ethan taught us how to live and love life – Remember Him - Do a bottom dance and smile!
Jennifer and Mary
Eulogy
This is the eulogy that Jo and I delivered on Tuesday for Ethan
----
Luke
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?!
Jo
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.
Luke
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.
Jo
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.
Luke
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.
Jo
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.
Luke
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.
Jo
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
Adele
We miss you Ethan. You have been a great brother to us. It is sad to say goodbye.
Erin
Your bravery will not be forgotten
Love Erin and Adele
We will put up Ethan's school teachers words as well, very soon.
----
Luke
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?!
Jo
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.
Luke
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.
Jo
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.
Luke
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.
Jo
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.
Luke
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.
Jo
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
Adele
We miss you Ethan. You have been a great brother to us. It is sad to say goodbye.
Erin
Your bravery will not be forgotten
Love Erin and Adele
We will put up Ethan's school teachers words as well, very soon.
Saturday, May 01, 2010
Post funeral gathering
Following the burial at Harkaway Cemetery, we invite you to gather at the Narre Warren Football Club Social Rooms for food and refreshments.
The map below gives directions from the Church in Berwick, to the cemetery in Hessel Rd, Harkaway, then to the footaball club rooms on Fox Rd, Narre Warren Nth.
View Directions to Fox Rd in a larger map
The map below gives directions from the Church in Berwick, to the cemetery in Hessel Rd, Harkaway, then to the footaball club rooms on Fox Rd, Narre Warren Nth.
View Directions to Fox Rd in a larger map
Thursday, April 29, 2010
Funeral Details
The funeral for Ethan will be held on Tuesday 4th May at 11:00am in Berwick at the Church of Christ at 446 Centre Road, followed by a burial at Harkaway Cemetery.
It is easy to get to from the M1 Freeway east of Melbourne. Take the C407 exit towards Cranbourne and then take the first right into Centre Road.
View Larger Map
Please do not send flowers. If you feel you would like to do something in lieu of flowers, please donate to Challenge. Challenge have been a huge support for us since 2004 with in hospital support for Ethan and also camps and other activities for all of the kids. It is OK to donate to any of the other charities we have linked to on the right side of the blog as well, they have all helped us and Ethan in some way.
www.challenge.org.au
It is easy to get to from the M1 Freeway east of Melbourne. Take the C407 exit towards Cranbourne and then take the first right into Centre Road.
View Larger Map
Please do not send flowers. If you feel you would like to do something in lieu of flowers, please donate to Challenge. Challenge have been a huge support for us since 2004 with in hospital support for Ethan and also camps and other activities for all of the kids. It is OK to donate to any of the other charities we have linked to on the right side of the blog as well, they have all helped us and Ethan in some way.
www.challenge.org.au
Funeral details pending
Please don't call regarding funeral arrangements. When we know for sure, we will put the details here.
Thanks
Luke and Jo
Thanks
Luke and Jo
Wednesday, April 28, 2010
Farewell mate
The last few days have been up and down. Friday he was pretty bad and we warned the girls teachers that they will not be coming to school on Tuesday, but then on Saturday, he had a reasonably good day. He was up playing F1 on the PS3, he was eating, drinking and happy. Sunday morning he woke in pain and was only semi conscious. The Dr felt he was entering the terminal end of life stage, it was tough thinking we couldn't talk to him again. But then we noticed the pump had not been working again. He had a couple of breakthroughs to get back on track. With his pain under control, he was again sleeping peacefully. He woke for 1.5hrs and managed to eat some lasagne and play a bit more PS3.
On Monday, Ethan slept nearly the whole day apart from a few semi conscious conversations. That night though, he was awake and alert and telling us he wasn't sick. Yesterday, Ethan woke during the day and was very agitated about going to the toilet. He settled after a couple of breakthroughs and slept.
We went to bed last night with Ethan's breathing quite loud and fast, but every five breaths was broken by a long pause. On top of this, his breathing was gurgly and congested. How long could he keep this up for? He just seems to fight and fight.
A couple of hours later (at around 2:30am), Jo woke and couldn't hear him breathing. We both went to him and felt his head, it was cold, he wasn't breathing, he had gone.
We woke the girls and told them, explained what had happened and why he was cold. We cleaned him and dressed him. Adele made him a bracelet, and Erin put some momentos on his bed. We all said goodbye.
No more pain for you buddy.
RIP Ethan
On Monday, Ethan slept nearly the whole day apart from a few semi conscious conversations. That night though, he was awake and alert and telling us he wasn't sick. Yesterday, Ethan woke during the day and was very agitated about going to the toilet. He settled after a couple of breakthroughs and slept.
We went to bed last night with Ethan's breathing quite loud and fast, but every five breaths was broken by a long pause. On top of this, his breathing was gurgly and congested. How long could he keep this up for? He just seems to fight and fight.
A couple of hours later (at around 2:30am), Jo woke and couldn't hear him breathing. We both went to him and felt his head, it was cold, he wasn't breathing, he had gone.
We woke the girls and told them, explained what had happened and why he was cold. We cleaned him and dressed him. Adele made him a bracelet, and Erin put some momentos on his bed. We all said goodbye.
No more pain for you buddy.
RIP Ethan
Thursday, April 22, 2010
Secretions
What's been going on you ask? Volcanic ash, a Maximum Security Prison incident, dodgy Rugby League team found out and Ethy Boy battling Cardiac Disease.
Mainly, it has been lots of sleep. Ethan has been clocking around 19 hours a day of sleep. The fever has come back somewhat and his chest is still full of secretions. As Ethan is sleeping in our room, it can be quite disconcerting to hear him breathing in the morning with a gurgling noise coming from his chest. We must put that concerned feeling aside and remember that he is actually comfortable and he is breathing steadily, it's just the 'noise' he is making that is making us uncomfortable.
With the lower half of his chest clogged with secretions, coughing is very important, but Ethan can't really cough like he used to. They are half coughs, that clear a bit of the gunk, but not enough. This will further compromise his oxygen deficiency. As a result of this congestion, the Dr has prescribed a new drug to add to his pump cocktail tomorrow, to help dry out the secretions.
We have had a couple of incidents where the pump was found to be not working. Ethan usually notifies us of severe leg pain when this happens, and we have to give him a break through to get on top of it quickly, or hit the button on the pump a few times to bolus some through. The worst incident was discovering at 11pm the pump hadn't been working for around 11 hours.
Apart from that, we are plugging along each day. We are eating food that has been generously cooked by friends/relatives, and like Ethan, have been stacking on the pounds :) I now only have about 12 square meters of lawn to mow thanks to the rest of it being poisoned. This has cut my lawn mowing time down from around 30mins to 40 secs. Excellent!
Mainly, it has been lots of sleep. Ethan has been clocking around 19 hours a day of sleep. The fever has come back somewhat and his chest is still full of secretions. As Ethan is sleeping in our room, it can be quite disconcerting to hear him breathing in the morning with a gurgling noise coming from his chest. We must put that concerned feeling aside and remember that he is actually comfortable and he is breathing steadily, it's just the 'noise' he is making that is making us uncomfortable.
With the lower half of his chest clogged with secretions, coughing is very important, but Ethan can't really cough like he used to. They are half coughs, that clear a bit of the gunk, but not enough. This will further compromise his oxygen deficiency. As a result of this congestion, the Dr has prescribed a new drug to add to his pump cocktail tomorrow, to help dry out the secretions.
We have had a couple of incidents where the pump was found to be not working. Ethan usually notifies us of severe leg pain when this happens, and we have to give him a break through to get on top of it quickly, or hit the button on the pump a few times to bolus some through. The worst incident was discovering at 11pm the pump hadn't been working for around 11 hours.
Apart from that, we are plugging along each day. We are eating food that has been generously cooked by friends/relatives, and like Ethan, have been stacking on the pounds :) I now only have about 12 square meters of lawn to mow thanks to the rest of it being poisoned. This has cut my lawn mowing time down from around 30mins to 40 secs. Excellent!
Saturday, April 17, 2010
Lots of sleep
Since Sunday, Ethan has been sleeping quite a lot, and when he has been awake, he has been sleepy. One day he pretty much slept through a whole 24hr period, only waking to go to the toilet. Generally, he has still been going to bed at around 6pm, and waking at around 10-11am. He hasn't been quite as bad with the constant waking up at night to go to the toilet, so overall, we are getting more sleep as well.
The doctor came yesterday morning for a review. Feedback from the nurses were suggesting we need to lower the doses as we hadn't been giving any breakthrough doses and he has been extra sleepy. And initially, this was what the Dr was suggesting. Our take on this is that he was sleeping more because he was fighting whatever infection he had and also that his cardiac status has deteriorated further, so we were not keen to change anything. Changing his meds now might mean he becomes more unsettled and agitated again while they work out the right balance. We feel with him not being as agitated as he has been, and wanting more sleep, lets just leave things as they are for a bit. And that is how it will be over the next few days.
The Dr is clearly concerned at the moment though, as he gave us his mobile and is updating the relevant parties of Ethan's current status. Ethan's chest is quite congested in the bottom half on both sides, and he is not clearing it properly, his temps have stopped happening now. With congested lungs, he has even less oxygen in his blood, causing extra tiredness, and therefore the longer sleeps.
The doctor came yesterday morning for a review. Feedback from the nurses were suggesting we need to lower the doses as we hadn't been giving any breakthrough doses and he has been extra sleepy. And initially, this was what the Dr was suggesting. Our take on this is that he was sleeping more because he was fighting whatever infection he had and also that his cardiac status has deteriorated further, so we were not keen to change anything. Changing his meds now might mean he becomes more unsettled and agitated again while they work out the right balance. We feel with him not being as agitated as he has been, and wanting more sleep, lets just leave things as they are for a bit. And that is how it will be over the next few days.
The Dr is clearly concerned at the moment though, as he gave us his mobile and is updating the relevant parties of Ethan's current status. Ethan's chest is quite congested in the bottom half on both sides, and he is not clearing it properly, his temps have stopped happening now. With congested lungs, he has even less oxygen in his blood, causing extra tiredness, and therefore the longer sleeps.
Sunday, April 11, 2010
Infection continues
Friday night Ethan had a pretty decent sleep and slept through till about 11am, but his breathing was quite heavy and would stop for a short period every few breaths. His chest was also very gurgly. There is a lot of muck in there. When he was up, he was very agitated throughout the day and wanted people to be quiet. He did have a constructive period in the afternoon when he made his new volcano and painted it. But that was only a brief moment.
Saturday night was a bad one again. It started with Jo changing his site, which went pretty well. We discussed Jo's handiwork and he agreed she did a good job. After going to bed, he didn't settle and he wanted to get up to pee constantly. He woke early in the morning and was a walking zombie, continuing to try and pee every few mins. Jo gave him a few breakthroughs. This settled him down and he wasn't so angry, but he was still very tired, lethargic and overall very sick. He eventually nodded off at 3pm and has been asleep since. Hopefully he sleeps through and doesn't get up later tonight. His temp measured 38.8 earlier, so the bug is clearly still brewing.
Moving him around in this chair reminds me of an old movie I saw once. A family just tried to emulate that movie recently by trying to put a 'sleeping' relative on a flight home.
Saturday night was a bad one again. It started with Jo changing his site, which went pretty well. We discussed Jo's handiwork and he agreed she did a good job. After going to bed, he didn't settle and he wanted to get up to pee constantly. He woke early in the morning and was a walking zombie, continuing to try and pee every few mins. Jo gave him a few breakthroughs. This settled him down and he wasn't so angry, but he was still very tired, lethargic and overall very sick. He eventually nodded off at 3pm and has been asleep since. Hopefully he sleeps through and doesn't get up later tonight. His temp measured 38.8 earlier, so the bug is clearly still brewing.
Moving him around in this chair reminds me of an old movie I saw once. A family just tried to emulate that movie recently by trying to put a 'sleeping' relative on a flight home.
Friday, April 09, 2010
Fever
Ethan has had a hot couple of days. He developed a temperature overnight on Wednesday and they have continued regularly since. We are assuming it is from a chest infection as he has a pretty moist cough. The temperatures range in severity, with the hottest being 40.2. This has left him feeling pretty lethargic and miserable. He is definitely not eating as much and is less hyperactive. The effects of an infection or the cessation of dexamethasone or both?
A 'Care Chair' was delivered today. During Ethan's stay at VSK he loved resting in one, so VSK with the help of the Childrens Palliative Care Team organised and had one delivered today. The chair provides comfort and flexibility to kids who may spend a large part of their day sitting or lying down. He loves it.
A 'Care Chair' was delivered today. During Ethan's stay at VSK he loved resting in one, so VSK with the help of the Childrens Palliative Care Team organised and had one delivered today. The chair provides comfort and flexibility to kids who may spend a large part of their day sitting or lying down. He loves it.
Wednesday, April 07, 2010
VSK
Ethan had an enjoyable stay at VSK. He slept extremely well Saturday night and even had an afternoon sleep on Sunday. Sunday night was a different story. He was up all night, finally falling asleep at 6am despite the nurses giving break through medication. We picked up a very tired and lethargic boy on Monday. The nurses made comment that they thought he had deteriorated while he was there. They thought he was becoming more lethargic over time. If we weren't picking him up, they would have called us.
He does appear to be more lethargic. But this also seems to be a good thing. He is not as agitated and irritable. For example, when he wakes during the night, he goes back to sleep quickly and he doesn't seem to be jumping from thing to thing as much. These changes could be linked to the dexamethasone being ceased. The needle sites aren't lasting now. We have weighed up the pros and cons of dexamethasone and have decided to leave it out and jab him daily if need be.
The girls received their dreams on Sunday. A pink limo arrived at the house at 12:30 and completely shocked Ez. She wasn't too impressed with being surprised but once on the road, singing karaoke and eating pink lollies she was fine. Once we arrived at the Hilton Sth Wharf we were escorted to the restaurant where Adele's bike was waiting. After lunch we checked into our room. The views from the 19th floor are amazing. Little Dreamers organised a great day.
He does appear to be more lethargic. But this also seems to be a good thing. He is not as agitated and irritable. For example, when he wakes during the night, he goes back to sleep quickly and he doesn't seem to be jumping from thing to thing as much. These changes could be linked to the dexamethasone being ceased. The needle sites aren't lasting now. We have weighed up the pros and cons of dexamethasone and have decided to leave it out and jab him daily if need be.
The girls received their dreams on Sunday. A pink limo arrived at the house at 12:30 and completely shocked Ez. She wasn't too impressed with being surprised but once on the road, singing karaoke and eating pink lollies she was fine. Once we arrived at the Hilton Sth Wharf we were escorted to the restaurant where Adele's bike was waiting. After lunch we checked into our room. The views from the 19th floor are amazing. Little Dreamers organised a great day.
Saturday, April 03, 2010
No more dexa
Ethan is still waking every hour during the night. Sometimes for a brief period and sometimes not. This has taken its toll on me and I have been unwell for the last week.
In better news, Ethan is happier during the day. There are still periods of yelling, telling us to shut up and just being cranky, but overall his mood is better. He is still jumping from thing to thing and eating lots. There was a small amount of dexamethasone in the syringe driver which we removed just in case it was aiding the hyperactivity and over eating. It has now been over 24 hours, but he is still eating like a pig. Maybe it will take some time for the effects to wear off.
On Thursday, Ethan's school teachers Jennifer and Mary visited. Jennifer brought out the volcano science experiment for Ethan to do. Ethan enjoys their visits and we appreciate their help and support.
Today was Adele's birthday. A sad but happy day; this will be the last birthday Ethan will share with her. But even with this dark cloud over our heads we got on with the day and celebrated. Everyone had a great day.
This afternoon we took Ethan to VSK. So much has changed since his last admission it took 1.5 hours to handover. The next 2 days will be strange but it will be nice to get some sleep.
In better news, Ethan is happier during the day. There are still periods of yelling, telling us to shut up and just being cranky, but overall his mood is better. He is still jumping from thing to thing and eating lots. There was a small amount of dexamethasone in the syringe driver which we removed just in case it was aiding the hyperactivity and over eating. It has now been over 24 hours, but he is still eating like a pig. Maybe it will take some time for the effects to wear off.
On Thursday, Ethan's school teachers Jennifer and Mary visited. Jennifer brought out the volcano science experiment for Ethan to do. Ethan enjoys their visits and we appreciate their help and support.
Today was Adele's birthday. A sad but happy day; this will be the last birthday Ethan will share with her. But even with this dark cloud over our heads we got on with the day and celebrated. Everyone had a great day.
This afternoon we took Ethan to VSK. So much has changed since his last admission it took 1.5 hours to handover. The next 2 days will be strange but it will be nice to get some sleep.
Wednesday, March 31, 2010
a good day
The increase in medications seemed to do the trick. Monday night he bombed and slept great. He
was only up twice. The first was brief and the second included sitting in the ensuite for 30mins but overall we all got some much needed sleep.
On Tuesday Ethan was in a great mood. He was happy and in a good place. It was the best day he's had in a couple of months. It seemed the increase in medication had worked. He could focus and concentrate on tasks. He was happy with the girls and visitors. Tuesday night was a complete different story though. He didn't bomb with the night sedation and he was up more than 10 times during the night. A break through dose at 4:30 made him crash and he was only awake once between then and 8:30.
Today he has been cranky and sleep deprived. He was back to telling everyone to shut up and go away. After a long day he crashed with tonights sedation so fingers crossed it continues into the wee hours of the morning.
was only up twice. The first was brief and the second included sitting in the ensuite for 30mins but overall we all got some much needed sleep.
On Tuesday Ethan was in a great mood. He was happy and in a good place. It was the best day he's had in a couple of months. It seemed the increase in medication had worked. He could focus and concentrate on tasks. He was happy with the girls and visitors. Tuesday night was a complete different story though. He didn't bomb with the night sedation and he was up more than 10 times during the night. A break through dose at 4:30 made him crash and he was only awake once between then and 8:30.
Today he has been cranky and sleep deprived. He was back to telling everyone to shut up and go away. After a long day he crashed with tonights sedation so fingers crossed it continues into the wee hours of the morning.
Monday, March 29, 2010
sleep deprived
The weekend was a shocker. Ethan was very agitated and cranky. I gave breakthrough after breakthrough but nothing calmed him. He just kept on going. I thought he would crash Saturday night but he didn't. The longest sleep he had was 2.5hours.
Sunday's nurse stayed for ages. She was unsure how she could help him or us. Many scenarios were thrown around between her, the doctor, Kristen and I. These included medication increases and changes, catheters and hospital/Very Special Kids admissions. Luke had taken the girls to a swim meet and I didn't want to make any major decisions with out him. In the end, we decided to increase the pump and be reviewed today.
No surprises, the increase in medication didn't really do anything. The review today resulted with another increase in pump medication and a big increase in night sedation. If this doesn't work, the Dr advised us to admit Ethan to Very Special Kids before Saturday to prevent carer burnout. He didn't think Ethan had urine retention, so a catheter wasn't inserted. So glad we didn't do that yesterday! The pump is now at Nozinan 20mg, Morphine 50mg, Midazolam 30mg and Dexamethasone .5mg. The night sedation includes doubling the Melatonin and increasing the Clonazepam by half. Hopefully this works and he can get some well needed sleep.
Today, Ethan has remained agitated and cranky with intermittent pain and is still eating non stop. He is a remorseless eating machine that will eat anything. He reminds me of Augustus Gloop. By morning tea time, he had eaten a full days worth of food. I never thought I'd see him eat like that.
Sunday's nurse stayed for ages. She was unsure how she could help him or us. Many scenarios were thrown around between her, the doctor, Kristen and I. These included medication increases and changes, catheters and hospital/Very Special Kids admissions. Luke had taken the girls to a swim meet and I didn't want to make any major decisions with out him. In the end, we decided to increase the pump and be reviewed today.
No surprises, the increase in medication didn't really do anything. The review today resulted with another increase in pump medication and a big increase in night sedation. If this doesn't work, the Dr advised us to admit Ethan to Very Special Kids before Saturday to prevent carer burnout. He didn't think Ethan had urine retention, so a catheter wasn't inserted. So glad we didn't do that yesterday! The pump is now at Nozinan 20mg, Morphine 50mg, Midazolam 30mg and Dexamethasone .5mg. The night sedation includes doubling the Melatonin and increasing the Clonazepam by half. Hopefully this works and he can get some well needed sleep.
Today, Ethan has remained agitated and cranky with intermittent pain and is still eating non stop. He is a remorseless eating machine that will eat anything. He reminds me of Augustus Gloop. By morning tea time, he had eaten a full days worth of food. I never thought I'd see him eat like that.
Friday, March 26, 2010
fat guts
Ethan remains tired and continues to eat non stop. The increase in food with the side effects of the pump medication led to some serious constipation. He was having a lot of trouble sitting and pushing as he would fall asleep. An increase with the laxatives and 1L of prune juice has him running to the toilet every 5 mins, holding his bum yelling "poo poo"! It's actually very funny to watch. He's gone from one extreme to the other. Lucky Poppy Syd bought 50,000 rolls of toilet paper!!
His abdomen is very swollen. It looks like he has a beer pot. The needle site needs to be changed more often as the extra abdominal pressure blocks it. After the stuff up on Tuesday, I am now fully aware of the effects of this and can get on top of things early. The site itself isn't red, but the medication hasn't gone through. Once it is removed you can see the needle is flattened or bent from the pressure. Ethan still cries and gets upset with the needle site changes but today he thanked the nurse for helping him.
Ethan also has bad leg pain. His little legs are swollen and he has cankles. The added pressure in his legs as well as the extra couple of kilograms he is carrying is causing some horrific pain. Sometimes he just collapses to the floor holding them, but today he has started punching them and kicking his legs uncontrollably.
Ethan is more accepting of his condition now. When he first went into hospital he was very accepting, telling me he was sick and never going to get better. He made me ring people and tell them to come to the hospital as he was never going home. He then went through a stage of telling us he wasn't sick. He is now accepting of his condition again and is admitting he is very very sick. This is a tough thing to deal with. He can't speak with a counselor as they wouldn't understand him. Not that he would anyway. I have managed to have some pretty in depth conversations about death, dying, sleeping, heaven etc. No parent should ever have to go through that. It can really play with your head. I have had a lot of trouble keeping up to date socially as it seems everyone is either whining about nothing or bragging about life. It is tough to stay positive when everyone else is moving on and my life seems to be at its lowest point. But then I remember things could be worse.
I am looking forward to the next couple of weeks with the girls on school holidays but am also worried how they will manage seeing the ups and downs more often. We have had a lot of offers for sleep overs and play dates if the girls need to get out and about. They have also been invited to birthdays and have holiday activities planned but we need to be mindful they are not too far away or doing to much during their break. Our annual camping trip has been cancelled this year.
His abdomen is very swollen. It looks like he has a beer pot. The needle site needs to be changed more often as the extra abdominal pressure blocks it. After the stuff up on Tuesday, I am now fully aware of the effects of this and can get on top of things early. The site itself isn't red, but the medication hasn't gone through. Once it is removed you can see the needle is flattened or bent from the pressure. Ethan still cries and gets upset with the needle site changes but today he thanked the nurse for helping him.
Ethan also has bad leg pain. His little legs are swollen and he has cankles. The added pressure in his legs as well as the extra couple of kilograms he is carrying is causing some horrific pain. Sometimes he just collapses to the floor holding them, but today he has started punching them and kicking his legs uncontrollably.
Ethan is more accepting of his condition now. When he first went into hospital he was very accepting, telling me he was sick and never going to get better. He made me ring people and tell them to come to the hospital as he was never going home. He then went through a stage of telling us he wasn't sick. He is now accepting of his condition again and is admitting he is very very sick. This is a tough thing to deal with. He can't speak with a counselor as they wouldn't understand him. Not that he would anyway. I have managed to have some pretty in depth conversations about death, dying, sleeping, heaven etc. No parent should ever have to go through that. It can really play with your head. I have had a lot of trouble keeping up to date socially as it seems everyone is either whining about nothing or bragging about life. It is tough to stay positive when everyone else is moving on and my life seems to be at its lowest point. But then I remember things could be worse.
I am looking forward to the next couple of weeks with the girls on school holidays but am also worried how they will manage seeing the ups and downs more often. We have had a lot of offers for sleep overs and play dates if the girls need to get out and about. They have also been invited to birthdays and have holiday activities planned but we need to be mindful they are not too far away or doing to much during their break. Our annual camping trip has been cancelled this year.
Thursday, March 25, 2010
Challenge Visit
The cool people at Challenge came out to visit Ethan today with Baxter. Baxter is a dog Ethan has met numerous occaisons on Challenge camps. He asked to see Baxter and Challenge responded!
Ethan with Baxter, Sonia and Jamie
Ethan last November in Ballarat on the 'Cops and Kids Camp' run by Challenge
Ethan with Baxter in Ballarat
Ethan with Baxter, Sonia and Jamie
Ethan last November in Ballarat on the 'Cops and Kids Camp' run by Challenge
Ethan with Baxter in Ballarat
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