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

34 comments:

Anonymous said...

Thinking of you all.
Lots of Love Catherine Brittain and family.
xxx

Anonymous said...

Our love to you all xxxx

Kate Farrell & Family

Anonymous said...

Dear Jo, Luke, Erin & Adele
My thoughts and love is with you.
Ethan will always remain in my heart and I will always remember him as the happy & cheeky boy he was. RIP little angel.
Love Anna

Anonymous said...

Deepest condolences to you all.

Love Kirstie Smart(Gapes) and family xoxoxo

Anonymous said...

Dear Jo, Luke, Adele & Erin,

Our deepest condolences for your loss.

RIP little man.

Chris & Siubhan Jay

tarin said...

My thought and prayers are with you. Ethan left an impact on all those who ever read his story. He was such a strong spirit.
Tarin Maxfield-dorling and family xx

Anonymous said...

Praying for peace and comfort for you all. (((HUGS)))

I do know Ethan is now at peace and pain free with the Lord.

God Bless

Rebecca

Anonymous said...

Rest in peace Ethan, you brave little guy. Sending love to you all.
Judi & Rob

Anonymous said...

He will life in your hearts forever and will still be with you through your lifes only in a different way. You will feel his presence and feel him close to you only you want feel his pain because now he has none.
Love
Jo from South Australia

Anonymous said...

Luke, Jo, Erin and Adele, no words but lots of love and hugs to you all. Farwell matey sleep tight Pauline and Laurie and family

Anonymous said...

Thinking of you all.

Our deepest condolences for your loss.

Patricia Lewis and Family x

JenniferColin said...

Jo,Luke,Erin and Adele all of my thoughts and prayers

Jennifer

Anonymous said...

No more pain Ethan. Such a brave little man, such a brave family. You are all in our hearts.
James and Heather O'Brien

Anonymous said...

Dear Jo, Luke, Erin & Adele, our heartfelt condolences to you all at this very sad time. Regards; Cassie, Matt, Lexie & Jonty Kennedy

Anonymous said...

To you all

I was at Cerylid with Luke when Ethan was born and with all the early diagnoses. It is hard for me to understand just how much you all have been though. To see the way you have held yourselves together is amazing. While his body let him down, he sounded like he had an fantastic spirt - and most certainly a wonderful family. I send you my deepest condolences.

Simon Ovenden

Darlene said...

To Jo, Luke, Erin and Adele,
I have been keeping up to date through your blogs and can't believe what you have all endured, lm very sorry for your loss and hope you find some sort of comfort in each other and precious memories you have and in knowing Ethan is now at peace... Thinking of you all at this sad time!
Our condolences.
Darlene Fankhauser (Macfarlane) and family.

Anonymous said...

Dear Luke, Jo, Erin and Adele,
We are sending you every ounce of our love during this extremely difficult time. What an amazing little boy Ethan was and what an amazing family you all are!!
Love from Carrie, Shaun and family. xxxxooooo

Anonymous said...

thinking of you all, i couldnt even imagine what it was like to go through something like this, RIP ethan your story really touched my heart, you will be now pain free

love to you and all your family xoxoxo

Sal Murgana said...

Dearest Jo, Luke, Erin and Adele,

Ethan was so blessed to be part of such an amazing, brave and loving family. He touched the lives of so many people who will never forget him.

My family is so proud and honoured to have been part of Ethan's life. The memories will be cherished forever.

May you rest in peace Ethan and be free from all your pain and suffering.

Jo, Luke, Erin and Adele, just know that I am always thinking of you and will do anything to help.

I love you all very much.
Sal Murgana
xxxxxx

Carmen said...

My condolences to you all.

I was called by Jennifer & Margot (from Glenallen) late this evening and was left deeply saddened by this news.

I have great memories of Ethan. Working in Jennifer's class with Ethan was a privilege and I'll never forget Ethan's bum wiggles and love of Eastlink and freeways. I loved his cheekiness! He was a little ray of sunshine and he will be missed by many.

May he rest in peace.

Anonymous said...

To Jo Luke Erin and Adele.
Our thoughts and love are sent your way in this difficult time. Ethan RIP.
Love Sandra Shane Jade Tate and Kane Broadbent xxxxxx

Anonymous said...

To Luke and Jo and Erin and Adele, For years we have managed to keep in contact via Ethan's Blog. Like so many others we were constantly logging on to see how he and you were coping with the obstacles of life. This year we have been in awe both of your ability to care for Ethan at home and your commitment to keeping the blog updated. We hope your strength, determination and love will see you through as you readjust to a new family life. Treasure your memories of a great little fighter. Rest easy now Ethan.
Our very best wishes, Joan and Andy Hegedus

Big said...

Dear Jo, Luke, Adele & Erin,

My deepest condolence to all of you. My thoughts and prayers are with you.

Although I never had the chance to meet Ethan personally, thanks to your blog, I was able to get to know Ethan and allowed me to follow and be part of his journey.

He's now in a place where there's no pain and suffering...

Rest in Peace Ethan. God bless you...

Big Bonifacio and Family

Michelle Theunissen-Scott said...

Dear Jo, Luke, Erin and Adele,

We are so sad to hear your news of the loss of your little boy Ethan. May you find peace in your hearts during this challenging time and know that you are loved by many.
I would have loved to have met your little man...I'm sure he was an amazing testimony to all! I found this poem for you and I hope it brings you comfort in some way.
Our love to you all.
Love Michelle (Theunissen) and Pharic

The Cord
We are connected,
My child and I, by
An invisible cord
Not seen by the eye.

It's not like the cord
That connects us 'til birth
This cord can't been seen
By any on Earth.

This cord does it's work
Right from the start.
It binds us together
Attached to my heart.

I know that it's there
Though no one can see
The invisible cord
From my child to me.

The strength of this cord
Is hard to describe.
It can't be destroyed
It can't be denied.

It's stronger than any cord
Man could create
It withstands the test
Can hold any weight.

And though you are gone,
Though you're not here with me,
The cord is still there
But no one can see.

It pulls at my heart
I am bruised...I am sore,
But this cord is my lifeline
As never before.

I am thankful that God
Connects us this way
A mother and child
Death can't take it away!

Author Unknown

Michelle Theunissen-Scott said...

Dear Jo, Luke, Erin and Adele,

We are so sad to hear of the loss of your little boy Ethan. May you find peace in your heart during this challenging time and know that you are loved by many. I didn't have the chance to meet Ethan but I am sure that he was an amazing testimony to all who crossed his path. Words cannot express what my heart wants to say but I found this poem and I hope that in some way it brings you comfort.
all our love Michelle (Theunissen) and Pharic

The Cord
We are connected,
My child and I, by
An invisible cord
Not seen by the eye.

It's not like the cord
That connects us 'til birth
This cord can't been seen
By any on Earth.

This cord does it's work
Right from the start.
It binds us together
Attached to my heart.

I know that it's there
Though no one can see
The invisible cord
From my child to me.

The strength of this cord
Is hard to describe.
It can't be destroyed
It can't be denied.

It's stronger than any cord
Man could create
It withstands the test
Can hold any weight.

And though you are gone,
Though you're not here with me,
The cord is still there
But no one can see.

It pulls at my heart
I am bruised...I am sore,
But this cord is my lifeline
As never before.

I am thankful that God
Connects us this way
A mother and child
Death can't take it away!

Author Unknown

Anonymous said...

thinking of you all,what brave and strong parents and sisters you are to ethan our love and thoughts are with you.
matt,michelle,samantha,lachlanand liam OBrien.

Anonymous said...

Deeply sorry for your loss - Our thoughts are with you...

RIP Ethan

Love
Paul & Lou Grobler

Bitter_Angel said...

Sorry for your loss.

Ethan, I hope you can now play freely, away from the pain and sickness.

wheller.dionne.n said...

RIP Little Man...

Such a brave little fella with an amazing family by his side all the way..
Our sincere heartfelt sympathy to you all.
Love -Brad, Dee, Maddison, Emily and Jarvis Wheller

Anonymous said...

Our thoughts and prayers are with you all. We are very sorry to hear of your loss.

Neil and Samantha Olsson

Anonymous said...

Dear Jo, Luke, Erin and Adele,
Deepest sympathy, our thoughts and love are with you all.
Kim and Bianca clipsham

Anonymous said...

thinking of you all, i cant imagine what it was like to go through something like you have. You are remarkable people, and i hope you remember all the good times you have spent with him.
RIP Ethan

love to you and all your family xoxoxo

Anonymous said...

Jo,Luke, Erin and Adele
So sorry for your loss. Thinking of you all at this sad time.

Love from Jenny Wilson and family
XXX

Barry said...

Very sorry to hear about Ethan. Our condolences to you all.

Barry Conway & Family