We are all finally home...

Hi there everyone
mum here.
Wow...its been the toughest couple of days, but we are truly humbled by all the love and support we have received in just such a short time. We thank cannot thank you all enough and we were just so pleased to be able to share our beautiful son with you all. We want to keep his memory alive and are thrilled to know that he touched so many lives.

It was absolutely comforting to know that our son is 'home'. Since he died, we just wanted him to be looked after because there were things we could no longer do for him and we had to trust in others that they would do their best for him. Eli arrived in bairnsdale early this afternoon and we were just so relieved to have him here with us and to know that he is in such good hands. Tom, Rachel and Peter vowed they would look after him, and we are comforted by the fact that they are.
We saw Eli again today and he looked exactly the same as we left him...in total peace. He is just so lovely.
While it is still extremely hard and no words can express it, we are looking forward to celebrating a life that has had an impact on us all.

We invite you to attend a celebration of eli's life which will take place at the Silver Lining Funeral Home chapel at 11.30am on Friday 21st November at 30 Victoria Street, Bairnsdale.
For the 'outta towners!" coming from melbourne, at the first roundabout turn left and travel about 100metres. The chapel is on the right pretty much across from the hospital.

Both pete and i look forward to seeing you there.

all the best
the simpsons
xox

our little hero

Hi everyone
eli here...mum FINALLY let me onto the computer to have a quick chat to say goodbye!
We have had a huge week and it all culminated last thursday night when i had a bit of trouble breathing...the dr's reckoned i had pneumonia which was pretty serious...
they also told mum and dad that i had septicemia and a positive urinary tract infection...(as well as the rest of the full on stuff like bad liver, gut, bowel and blood)...
I ended up in ICU on friday morning. They did a great job to help me breath again. This morning i had a few issues with some blood...the dr's called it a hemorrhage and unfortunately it filled up my lungs and i had heaps and heaps of trouble breathing by myself.
I could see my mum and dad the whole time and they never left my side. The doctors in icu were awesome and gave me the best chance they could, but you know what...i was pretty tired from all the stuff that was going on in my body and with my mum and dads blessing, i decided to be with my ninny from sale. I know mum and dad were absolutely heartbroken, and i was very very sad to leave them too, but ninny looked too good and i was a bit tired from being in pain.
So without further ado, i would like to thank every single one of you who have stuck with me this whole time. I know that mum and dad thought about all of you, and like we all kept saying, without you all, i dont think i would have got as far as i did. In keeping to mum's words, 'we gave it a fair dinkum crack'.
I love my mum and dad so much and i am thankful for all they did for me. I am also happy knowing that all of you will help them grieve for me. Mum and dad reckon you are all pretty awesome, and i know that i will leave them in very safe hands.
I will play with jazzy and chad (finally coz i have been in isolation for sooooo long!) and will keep an eye on all of you from heaven.
You have all been very special to my family and have lived an amazing rollercoaster with us...something that has probably been extremely difficult to do at times.
Take comfort in the fact that i am footloose and fancy free and am no longer in any pain. I fought the hardest i could and i know mum and dad are so very very proud of me (i heard them whisper to me)...
there will be no more worries for mum and dad about what my counts are doing, how im feeling or why im not sleeping. I couldnt have asked for a better support crew in them and i just love them heaps. Dad reckons i epitomise the 'anzac' spirit and i reckon i had a fair crack.
So from me to all of you...thank you so much for sharing this journey with me...i will continue to watch all of you shine. Just remember, dont let the little things get you down, live life to its fullest and embrace life for what it is.
All my love and kisses
Eli Charlie Simpson
xoxox


Hi everyone, mum here.
Eli Charlie Simpson was born on 28 September 2007 and passed away on November 16 2008 aged 13 and a half months. Pete and i are absolutely devastated with the loss of our son. He fought an absolute mighty battle with infection after infection and not once did we ever give up hope. We were solely dictated by our son...if he was breathing, then there was life and we held onto that for a long time.
We were both present when eli passed away, and it is an experience we will never forget.
Our son was the bravest little battler and never ever ceased to amaze us. There were a couple of times where we thought he would succumb, only to wake up the following morning playing with his tubes and wires.
We are heartbroken and have lost the love of our lives.
We dont want pity or sorrow, eli would not have wanted that. We would like to celebrate his life and keep his legacy alive. He will never leave our hearts.
We take so much comfort in the fact that he is with our nan from sale, and couldnt be in a better place. She will give him the love that we can no longer provide for him.
In the words of eli, we would dearly like to thank everyone who has sent messages of positive thoughts. There was not a day that went by without receiving a text or email from one of you wishing us all the best...it honestly kept us all going and until today, we never gave up hope that eli was going to make it.
The battle he fought was just too big for his tiny body and we are just so proud to have had him in our lives. this kid was simply amazing and for all that met him, there was always a sense of being in the presence of someone special.
our heartfelt thanks goes out to all the nursing staff on the 6th floor, especially rae-lee and carol who were there for us when we needed it the most. we are also thankful to the team in icu for never giving up and trying everything they could to help our son.
we are exhausted and have fought a battle that has gone on nearly 10 months. Thank you all for sharing our highs and lows, it something we find very humbling and we will never forget it.
we are still in melbourne and are refusing to travel home until eli is on his way too. It is going to be a huge adjustment for us but take comfort in the fact that there will be an extra star in the sky and an angel looking out for you....we do!
With love to all of you
"The Simpsons"
xox

we would love for you to help us celebrate eli's life. We are unsure of details at this stage, but will try and keep you posted. For those who live locally, keep an eye out in the paper, or the herald sun for celebration details.

we request no flowers, but in turn support some charities that are dear to our hearts - the leukaemia foundation, Challenge for kids with cancer and Angel Flight.
we hope to see you soon.
xox

a small update

hi there
mum here
eli has been so-so for the past couple of days. There have been a few really small victories but then there has been some steps back as well.
His liver function test has seen a small rise which is not such a good thing considering it was heading in the right direction. It certainly is not as high as what it has been , but any small increase has put us all on notice again.
Eli's bilirubin has also continued to rise which i think has puzzled lots of us, as it was looking like it should have come down by now. So there are still some concerns from a liver perspective.
The other thing is because something is chewing all his platelets and plasma, he is still needing those things everyday. And because his coagulation is still very poor, we are still seeing some bleeding.
Again, the dr's really dont know what is happening with eli.
On a positive, he is playing for a bit longer and is a little more interested in things. But he is still a very very sick little man. We are keen to speak with dr karin at some stage today to see what her take on it all is. Im not sure we will get the answers we are looking for, but we will have a crack!
anyways...best fly...
lots of hugs and smiles to everyone
the simpsons
mmmmwwwhaaaa from eli
xox

steady as she goes...

hi everyone
mum here, eli is sleeping....sssshhhhhh!!!
the drs finally confirmed on monday afternoon that eli did not have his jmml back, nor was it graft vs host disease...it means that we are stuck with a very cranky virus/infection that no one can pinpoint!
His little tummy is still pretty sore and we are still seeing some intermittent bleeding. We had the gastro team down again yesterday, and they too are at a loss to explain why. Hopefully we can just get a few more 'symptoms' that may pin point what is actually going on.
Within himself, he is going ok. we have seen flashes of the old melon (his knickname)...with him tugging at lines he is not supposed too, and we even got a very small giggle from him yesterday. Music to our ears!
had a very rough night last night, he was very uncomfortable with his bowel and tummy stuff so he didnt get too much sleep. He had 5 spoonfuls of weet bix this morning which is highly exciting for us, although we are hoping it doesnt give him too much grief.
I think they are re-testing for hep a again today so we will see what that says. while graft vs host disease can be really nasty, we probably would have preferred it given you can 'fix it'...this virus thing...no one can fix cause we dont know what it is.
he is still getting heaps of plasma/platelets and blood and still has something on board as his white cell count is between 35 and 45 depending on the day.
The drs have also decreased his steriod a little further so he is almost free of it after 5 months. Its amazing, we celebrated 5 months post transplant yesterday....it has gone so quickly!
anyways...best fly...
hope you are all well and you all backed a winner or two at the cup....
will keep you posted!
lots of love and hugs
the simpsons
xox

another huge and frustrating week

hi everyone
mum here...
after seeing very very small steps forward with eli, we felt like we went back to square 1 with some bleeding from his gut and bowel. It was quite full on by thursday and friday with the dr's indicating that they wanted to see what was happening to him from the inside. He underwent more 'testing' on friday afternoon with a scope to see what they were both doing. The dr that did eli's scope was one of the most beautiful men i have ever met. He was truly amazing.
He told us that early indications were that his tummy was very inflamed and congested (whatever that means) with evidence of some bleeding. His bowel also indicated some bleeding had taken place (we can confirm that!) and that part of it was 'pale and wrinkly'. We were told we would have to wait for pathology to come back to rule out or confirm what was happening.
the three things still floating around in minds are infection (viral or bacterial), graft vs host disease or the return of his original condition - jmml.
this week has been again a very difficult pill to swallow. We have seen some stuff that will be with us the rest of our lives and every day makes us embrace what we have.
Eli has been really uncomfortable at times and has been very lethargic and still sleeps a fair bit. Very difficult to watch a little bubba go through what he is going through but we hold onto the hope that we will see him take his first steps are what keeps us going. Very very tough gig.
We suspect they will not be able to pin point what has gone on, but perhaps more 'excluding' those things that we think he may have. Im sure they have enough little 'pieces' of him to find what they need.
My gut thinks its probably an infection of sorts which makes it very difficult to treat when they cannot pin point it. One thing im sure he does have is another urinary tract infection...poor little thing. when it rains it pours. Hopefully they can confirm that tomorrow and give him a bit of treatment.
He is truly the most amazing little boy (and not just cause he is ours!)...but im sure if anyone knew this kid he would be an inspiration to anyone. Its going to be extremely small steps to get better and i think pete and i would be completely stoked to be home by christmas. Now that would be awesome.
will keep you posted and thanks so much for all those who continue to send their love and best wishes. For nearly 9 months people have continued to let us know that we are in their thoughts. It makes us appreciate what we have around us and how important you guys are in giving us the strength we need. We definitely have our bad days and we know that many of you are just a phone call away - so thank you!
love and hugs
the simpsons
xox
a sleepy mmmmwwwwaaahhh from eli!
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