Happy new year!

Hello everyone

we are sorry we havent had a chance to update the blog for a bit, we have been kept busy with chrissy festivities, work and a lovely bit of gardening!

despite the circumstances, we actually had a really lovely day. The cows got a few bales of hay in the morning, then we went to our friends 'the pendles' where we stayed for the afternoon and ate like kings. Robyn did a fantastic job and lit 3 candles, one for eli, one to remember family we couldnt be with on the day, and one to give us all good luck for 2009. Nearly 4 and a half hours later, the only candle that remained alight was Eli's candle...funny that and really, not surprising!

Eli also gave me a paperdaisy for christmas (like my ALL TIME FAVOURITE FLOWER in the whole wide world!). It inspired us to go hunting for more, and we walked out with a few plants which we took great delight in planting over the chrissy period, with eli never being far from our thoughts. That reminds me, we will have to start posting pics of eli's cottage so you can follow us with the garden...we are just so way excited about decorating his garden.

We also went to my family in stratford for a bit of xmas tea. Its the first xmas without our nan (eli's ninny) and you couldnt help but think the pair of them were with us the whole time. There was no trifle (nan would ALWAYS make a trifle), but lots of nice memories to share with the family. Pa was well fussed over, ate like a king and had a few quiet beers. Hard time of year for anyone who has experienced the loss of a loved one. But with heads held high, we all got through it together, as a family. As pete said, the whole day, while painful at times, was one of the best christmas's we have have for a long time. It just reinforced to us that you dont need fancy presents and the best of everything. Good company with family and friends, good food and a nice drop of wine (and great xmas pud/sweets) will do the trick everytime. Heres hoping that you all had a lovely time as well.

Righteo, i best fly...got a bit on for the next couple of day. We would like to take the opportunity to thank EVERYONE for their wonderful love and support in 2008. It has been a shit of a year and pete and i (like many other families) are absolutely gunning for a better 2009. Our thoughts and love are with you all, and we will touch base again soon.

All the best
the simpsons
xox

Get your running shoes on - oh yeah...and Merry Christmas!

Hi everyone...
ive done a tiny bit of research about the 2 runs pete and i (and hopefully a few of you) can get involved with...They are:

Leg it for Leukaemia - They have 2 runs in 2009,

1. Albert Lake (Melbourne) on Sunday 15th Feb 9.30am - 11.30am or
2. Guthridge Lake (Sale) on Sunday 1st Feb 9.30 - 11.30am

You can download an entry form from www.leukaemia.org.au or just get in touch with me if you are keen. The walk/run is NOT timed, rather a celebration of your own health or for loved ones, survivors, carers or even medical staff - a chance to acknowledge the important people in the cancer journey...

All money raised will assist the Leukaemia Foundation to fund vital research and provied free services to patients and their families.

Cost:
$25 for individuals
$50 team (4 people)

Again, just give me a hoy if you are keen to be involved! Pete and i will DEFINITELY be at sale...

The 2nd Run/Walk:
Sunday 5th April - Run for the Kids.
A chance to raise money for the Royal Children's Hospital Good Friday Appeal.
There are all sorts of entry costs etc, and you can find out more if you head to:
www.runforthekids.com.au
Again, if you have ANY questions, please give us a hoy and we will help you through it...Thanks again to steph for putting us onto this one as well...

There is another one which is on Mothers Day in Melbourne and raises money for Breast Cancer and is usually a great day. We will post more info on this as it comes to light...

Anyways...lots to think about, run/walk it really is all heaps of fun to be amongst it all, getting out in the fresh air and knowing you are contributing to not only your own well being, but for those that are affected in some ways by these diseases...

we would also love to take the opportunity to wish you all a very merry and safe christmas and new year whatever you are doing. Its going to be bloody tough for some of you (including us). Just do what you feel like doing, and do it in your own time.
Thankyou again to all of you who continue to keep an eye out for us with 'welfare' checks, and messages of love and support, particularly at this time. We really do appreciate it.

We will catch you soon.
luv, hugs, pressies and sunshine (and a bit of rain!)
the simpsons
xox

Madagascar 2 - Lots of fun

Hi everyone

Just a quick hello and a massive thanks to all of those people who gave up their sunday afternoon to watch a bloody funny movie to help us raise some more dosh for the leukaemia foundation...

A huge thanks too for the bairnsdale ladies auxillary (BLA) who worked hard to get it all up and running, advertised, decorated, collected stuff from local businesses for the goodie bags which were given to the little kiddies who showed up, collected cash for tickets and overall were just fun to be with. I think the final tally was around $382.00 which will be donated to the Leukaemia foundation so thanks again to all those who came along or helped in some way...it really is greatly appreciated...






pete and i are going ok..drawing closer all the time to christmas, but are trying to prepare for it the best way we can. We are looking to head up to the cows and give them a few bales of hay (the babies are huge now!), then we will zip around to our friends just up the road for some tucker, then finally after a bit of a snooze, down to stratford to spend some time with the family for a christmas tea and a few quite ales...it should be ok.

We still think about eli every single day. We went for a long walk on sunday down along the beach to the entrance. It was just lovely and i guess we are just starting to move forward and remember more of the good times rather than the sickness eli endured.

Our thoughts are with all those families who are bereaved or have little poppets still in hospital at this time of year. Its a tough gig for many of the families and our hearts and thoughts are with all of you.



pete and i have started running and are in training for 'leg it for leukaemia' which will be in sale on the 1st of february 2009. I will post extra details when i have them. We are then hoping to get to the Fun Run for the Kids in Melbourne which i think is in April - Steph has mentioned it in the comments section so when i/we get organised, i will post more info...
The other run we are keen to be involved in is the mothers day fun run which raises money for breast cancer...so we will pop that one on as well, and if any of you are keen (mmm, or mad!), we would love to see you...and your entrance money to these events go to a great cause.

we have been ok, we both started work yesterday so that will hopefully help us get through the christmas period as well. We make no excuses, we are still hurting everyday, thats just the way it is...and will continue to be. Like pete says, our hearts will always fly at half mast...

enough of being sad, time to celebrate some wonderful fundraising efforts! Oh yeah..im sorry about the lack of cards this year..just couldnt quite bring myself to do the card thing this year...perhaps next year! We have had heaps of positive feedback about our lights on melons cottage, so we are pleased we could bring some smiles to people's faces this christmas. All the best and will talk with you soon.

love
the simpsons
xox

Aunty Becs Poem has arrived...

Hi everyone...

pete just told me he saw three stars last night...and he immediately thought of Eli, Nicky and Chad...little buggers are never far away...
one of the most loveliest bits of feedback we have had is that everytime it rains, lots of people look to the sky and think of Eli...its another wonderful memory...we do the same thing ALL the time...

Now, aunty becs poem has arrived so i will put it down in the celebration part...its called 'my teddy bear' and was written when eli was first born by my sister rebecca who lives in perth...she really has a beautiful way with words and i reckon she should publish a book of poetry...she is very very talented...as im sure you will see.

pete and i are heading back to work on monday...there are no expectations, and we are hoping that these small steps forward will help in our loss...we will still keep writing as things happen, and i will get some photos up of melons cottage very very soon so you can follow our progress...

For those that can, we would love to see you on sunday (tomorrow) at the bairnsdale cinema...4.30pm to watch madagascar...should be a fun afternoon....proceeds go to the leukaemia foundation...

all the very best and i hope you enjoy a very lovely weekend.

luv and hugs
the simpsons
xox

Eli's celebration

HI guys

you will need to scroll down to view our thoughts on eli's celebration held 21st November 2008...not sure why it has placed itself in that position, but it has...im a dinosaur and unfortunately cannot change it!

Its listed under Thu 11 December...

for those of you who didnt attend eli's celebration, have a couple of tissues handy, for those that did, hopefully it captures some lovely memories for you...

love and hugs
the simpsons
xox

Fundraising begins...

Hi everyone

Pete and I attended little nicky's celebration yesterday and it was a beautiful goodbye to a beautiful little man...It was also a great opportunity to catch up with a couple of the nursing staff, and some mums and dads that we met while we were in hospital. In all honesty, it was still very very raw, but we are thrilled that we could celebrate the life of a little man.

Now...I received a lovely email yesterday, and im not sure who is the brain behind the idea (although the BLA - Bairnsdale Ladies Auxillary) is the first thing to spring to mind...anyhoo..the email invites those that are interested to attend the screening of Madagascar 2 at the Bairnsdale Cinema on Sunday 21st December - 4.30pm. Tickets are $13 for adults and $9 for children or $36 for a family (2 adults and 2 kids). Some of the $$ made from the ticket sales will be donated to the Leukaemia Foundation, so when and if you can we would love to see you...

The only catch is....the girls need numbers by Monday arvo. So if you ARE interested, give me a buzz, or ring "Aleisha" on 5152 0641 and put your name down...they will accept money until 19th December...

Thanks to EVERYONE who got this up and running...its a bloody great effort...

Love and hugs

jodes and pete
xox

Eli's Celebration

HI everyone...
i know i have promised for AGES to post some details about Eli's celebration.
I will see how i go and i hope i capture the day as best as i can.

The morning started in a whirlwind really, we knew it was the day to say goodbye to our son. But as pete said, we had the most amazing build up to the day that we could honestly be there and feel nothing but an immense pride towards our son. All the stuff he taught us, the joy and tears we had when we put together his photo montage, the pain and pride we felt when we were writing our speeches and the fond memories we had when discussing eli's life with the celebrant Peter Murray who conducted the service.

We took great comfort knowing that eli was being looked after in an amazing way by tom, rachel and peter murray. We took our time and planned a little bit of eli's service every day. Tuesday evening we picked a couple of readings and some 'grown up clothes', wednesday we looked at all our photos and put our montage together and thursday we very proudly wrote our speeches and tweaked his little coffin with wiggles stickers, his toothbrush and toothpaste, an aussie flag, a little superman symbol, his wiggles drum, his little fishy hat, a couple of cows that were given to Eli by his friends, a photo of his little mates and their mums from our mothers group and most of all, a bloody big dose of our love. Friday we said goodbye to our baby boy.

Peter Murray did a fantastic job and outlined the proceedings for the service and invited our friend bella to do a reading for us.
He then talked about eli's life and all the first's that eli experienced which raised a few giggles from the crowd. Soon after we celebrated Eli's life with a photo montage which was just lovely and hopefully it will work on the blog for us. We also heard from Peter Appleford - our big boss which was just the most amazing speech and again, we will post it for you to read. Peter did a fantastic job in capturing EVERYTHING we wanted and needed and for that we thank you. Eli's WAMMA (grandma from WA) stepped up and read a poem that was written by his aunty rebecca when eli was first born and we thought it was a lovely reading for the service. Pete and i also got up with immense pride and recalled some of our favourite memories and the lessons he taught us. We then invited our family and friends to lay a bit of bottlebrush, tea tree and eucalyptus leaves on eli's coffin (we called it the candy bar because thats what it ended up looking like!) and that was undertaken to eli's favourite song "The birds and the bees". After a few more words, it was time to say goodbye to our beautiful son and let him go for the last time. With many tears, we picked up his tiny 'candybar' and walked it to the hearse to the gorgeous song 'In the arms of an angel'. We did not want the experience to end and to us, it was no way a funeral...it will forever be known as eli's 'service' or 'celebration'.

The car carried eli's little candybar away to traralgon for his final trip where he was cremated. As you have probably read, there was no way he was going to be left too long ANYWHERE and as soon as rachel called us to say eli was home, we collected him the following day which was the wednesday after his celebration.

Eli kept his promise and we got the most amazing amount of rain on the sunday (160mm or thereabouts in buchan) and it has steadily been keeping pace since we have been home. Eli is sitting in his cot off our kitchen so he can see everything that is going on, and is within easy reach to talk to. Every sunday is extremely difficult but we are slowly learning to celebrate his life rather than remembering the way he died. We have seen things that no one on this earth should see, and i suspect that it is going to take a while to really get our heads around. But, we will take each day as it comes and surround ourselves with positive energy and know that we have had a truly special little man in our world that has taught us so much about life and ourselves in such a short time. And we will continue to work quietly but passionately for all of our charities (including giving blood!!) and i know it will keep us busy and keep eli's legacy alive.

Rebecca's poem - 'my teddy bear'

Your smile warms our heart
Your gift warms our soul
Your are our son and friend
Your heart is big and true
And true is what we will always be to you
Our love for you
There is no spare
Because you are our teddy bear
You are our wildest dream come true
But never a son as true as you
So dream a dream
As old as time
And it will come in good time
We have always stood side by side
And never put a dream aside
Games we have played
And times we have laughed
Those times will always stay in our hearts
And forever remember
You are our son, and teddy bear
If ever you need us we will always be there.

Reading Bella read-

Ninny saw that you were getting tired
A cure was not to be
So she put her arms around you
And whispered ‘come with me’

With tearful eyes we all watched you suffer
And saw you fade away
Although we loved you dearly
We would not make you stay

So when we saw you sleeping
So peacefully from pain
We could not wish you back
To suffer that way again

A beautiful heart stopped beating
Brave and inspirational hands went to rest
Ninny took you to prove to us
She only takes the best

In life we will miss you dearly
In death we love you still
In our hearts you will always hold a special place
No one else will ever fill.

Peter Applefords speech (inspirational)...thanks peter a...
Eli’s Service

Peter and Jody have asked me to say a few words today about Eli.

I am not here to tell you how well I knew Eli, or all the good times we had together. To be honest I only met him three times – one of those was a haircut appointment.

I am not going to try and make sense of what has happened. I cannot.

I am going to talk about how Eli can make the world a better place. I am going to tell a story of three people – a family. A story of love, courage and strength. A story about one individual that can make us all better people.

The world can be a better place because of Eli and what has happened. And we need to make this happen. We owe it to Eli. We owe it to Peter and Jody.

And Jody and peter need to know this. They need to know that what has happened meant something. So tell them, if not today when you have a chance. Tell them what Eli meant to you and how you are a better person because of Eli.

We have seen three people who no longer coveted the wants of life. It was about the needs - needs of life, for life. The need to be together, to be strong, to be loving, to be courageous. Hours, days, weeks, months of blood tests, results, doctors, hospitals, needles, operations. Away from home, away from family, away from friends – but together as a family. The food didn’t matter, the house you owned, the car you drove, the work, the stakeholders. None of it was important. None of it mattered. All those things we spend so much time worrying about, arguing about, getting upset over and upsetting others over.

It is about a child. A tremendous boy called Eli. The treasure of his parents. The hero to many.

Eli went through a lot. It all happened to Eli. He asked for none of it. But he didn’t complain. He met it all head on. He stayed brave and happy. And he provided happiness and joy to so many.

He was faced with many challenges. Leukaemia, splenectomy, transplants and infections – you name it. You couldn’t blame him if he gave up. But he didn’t, he wouldn’t. He fought on showing strength and courage – the strength and courage of a hero, our champion. Strength and courage we all respect. Supported by the love and strength of his parents. You could see where it all came from. And watched and helped by many.

Eli provided many good times. Peter and Jody cherished the time they had together as a family. And wouldn’t give it up for anything. It is a pity is couldn’t be for longer.

I am better for knowing Eli and what happened. Eli got us all to take action – donate money, send wishes, express love and support, pray, hope – shave our heads. He pulled us together, he made us forget our differences. He brought out the good in us. He made us do things we wouldn’t normally do – I was pretty vain about my hair. And we can’t let that go.

In the future remember Eli. His bravery, his love, his strength, his courage. Keep this in mind in the difficult times. The next time life seems tough, when we feel an injustice has occurred, we aren’t happy about something or with someone – think of Eli. Think of Jody and Peter. Think of the last twelve months and today. Think is it about a want or a need. Think would Jody and Peter let it go to have Eli back – would Eli give up.

We cannot change others but we can change ourselves. Use Eli’s strength in the hard times, for courage in fearful times, to place things in perspective. Do this and the world would be a better place.

Thankyou Eli for what you have taught me.

God bless.

Mum and dads speech

Pete opened

On behalf of Eli, Jodes and myself we would like to sincerely like thank our family, friends, colleagues, doctors, nurses, PSA’s for all your on going support. We would like to thank those people who kept an eye on our house, cows, cat and the girls from the newly formed Bairnsdale Ladies Auxiliary for your very nourishing Red Cross packages. I know that I will be fed and sheltered if Jodes ever kicks me out of the house. We would also like to acknowledge the Dr’s, nurses and PSA’s at the children’s hospital who never gave up on Eli and our employers Fisheries Victoria who never questioned and only gave unconditional support. The Leukaemia Foundation for providing us with a home away from home and support while we were in hospital and ‘Challenge” – supporting kids with cancer for the ‘little things’ we needed. Angel flight also helped us get to Melbourne and back in a day which was just sensational. Without all that love and support we would not got as far as we did as a family.

JODES

Giving birth to a baby is truly the most wonderful experience anyone can have. How proud we were when Eli Charlie Simpson came into our world. Like many new parents, a new world opens up full of amazement, joy and most of all love.
Eli always challenged us. Quite unsettled at times, pretty good on the tooth, a love for my boobs, didn’t like to sleep much through the day and always kept us honest. Like all babies, he grew, ate well and was always loved unconditionally.
When eli was 15 weeks of age, our world changed forever. He was diagnosed with leukaemia and while we were literally heartbroken, we were determined to do what we could to help our son get through the biggest battle of his life.
And so started the indoctrination into a life where medicine, blood counts and isolation takes priority – 4 hours from home and far from any kind of normality.
Eli took most things in his stride. We continued to strive for the most ‘normal’ life we could, having our own routines and always encouraging our son to develop and achieve milestones in his own time – which he did.
I often said it was hard in a medical world to not forget about the ‘baby stuff’. At times eli cried and we thought, is it the affects of chemo, what is happening only to have a tooth pop up a couple of days later. The challenges were many!
As a very proud mum, I could rave on forever about our son. I would like to share a couple of my memories with you.
June 4th this year, a day before his bone marrow transplant, eli discovered he had a willy. One small pull and he was away. I laughed like crazy, not fully comprehending how much joy a doodle could bring to a males life. I quietly left the room knowing that pete was hanging over the cot looking at eli with a belly full of pride saying ‘that’s my boy’. Little did they know we were at the nurses station watching them on a tv screen and both were clearly in heaven. How proud I was.
The other thing I loved was knowing that eli took great delight in watching the wiggles ad nauseum. I think pete and I know every wiggles tune to have ever graced this earth and are thankful for their talents as im sure hospital would have been an extremely boring place without them for eli.
I also will remember the massive carbon footprint left as I account for all the kilometres I did driving eli around so he would sleep for more than 30mins. Ironically, the car we bought to drive eli to appointments about 2 months ago is now on gas!
Even though eli was just 13 ½ months of age, his life was packed full of experiences.
We would like to openly acknowledge the grief and devastation we are feeling for the loss of our son. We both feel very lost without eli being around us. We take comfort in the fact that eli is no longer fighting and that he is truly in a place where he can muck around, not worry about germs and most importantly, he is no longer in any pain.
Our lives will no longer consist of giving medical staff heaps of curry, laughing as eli and pete strategically planted creepy crawlies under thermometers and on drips to scare nursing staff, supporting other families in the same situation we were faced with, giving people knicknames like rae-way, fantapants, the roadrunner, the school principle, band camp, Hannah Montana, the goonie bird, glamourpuss, Cleopatra, fritz, the wee Scottish thistle, muddy waters and the list goes on. You can see we often had plenty of times on our hands to get into some sort of trouble.
We would like to think that our experience at the children’s cancer centre with a baby has left a legacy of continually trying improve processes and procedures. For staff, just trying to be a bit more tolerant of mums and dads with small babies like eli, remembering to open doors quietly when babies were sleeping, and letting mums and dads guide the way with routines and not let hospitals dictate life. We fought hard for these few privileges and hope they assist other families in time.
We know eli will be safe in his ninny’s arms, eating twisties, blowing raspberries, watching the wiggles and continuing to leave his mark on our world.
Eli will have many legacies for us, and we hope he has just one or two for you as well. Some will be very quickly apparent, but some will happen over time. I know I will remember our son as a bloody little legend who fought like hell and was loved unconditionally by everyone.
PETE

When I sat down to pen a few words about our boy, I said where do you bloody start. As Jodes said Eli always kept us honest and always seen things black and white. He had Jodes stubbiness and my cheek and I know in the years to come that Jodes would have been that bad cop and myself the good cop. Even though he was only with us for a short time, I will always treasure the memories of our boy. I will treasure the mornings that we went milk crate hunting in the streets of North Melbourne and how I spoke to him about what would be required when we moved onto larger moving targets. I will admire his ability to attract the most beautiful nurses who would ever find in a hospital into his room. I will miss his little monkeyshines. The way he blew raspberries and how it was music to my ears and most of all, our cuddles and how we played on the swing and how he sang like a canary in the process. I will never forget Eli’s fighting and staying power and how demonstrated spirit of his ancestors who fought the battles of Gallipoli, Western Front and patrolled the world’s vast oceans.
I would like to thank our boy for the new lines in my face and the grey hair that is emerging like weeds in a paddock full of clover. I thank him most for teaching me about life, how simple things are often the best, not to be afraid, what courage and determine really means, how to be strong and most of all the good times we had as a family.
I take solace in the fact that he fought a good fight to the very end and never gave up and how Jodes and I were with him to the very end to tell him that we loved him, how proud of him we were and that he was free to go.
There’s no doubt that we will miss our little man and the flags in out heart will forever fly at half-mast. I know in my own heart as the minutes, days and years pass by his legacy will become clear. It’s not good-bye but we shall meet again my big buddy and can you do something about this bloody drought…


Eli's final farewell speech
ELI

Just before eli passed away, he asked his mum to let you all know that he was extremely thankful for all your support.
He said he felt so lucky getting so many messages from you all and takes comfort in the fact that he knows you will look after his mum and dad for him.
Eli said he felt sad to leave but he was tired from fighting. He said he was very proud that he gave life a fair crack and enjoyed the time he did have here with us all.
Eli was also thankful to all the staff at the royal children’s hospital and dr goss who followed his progress from his diagnosis and visited us in Melbourne when he could.
Eli said that he would like to thank his mum and dad for never leaving his side since the time he was born and understands that there will be a hole in their hearts forever. He also giggles at the times mum got cranky at some of the medical staff which put a new meaning to the phrase ‘fix bayonets!”
Eli said that he knew his mum and dad loved him unconditionally and were his voice when he needed to be heard. He also recalls the time he would pull dads chest hair in the shower and all those times mum copped wee, spew or poo over her and she always took it in her stride. Eli remembered the time when he heard his mum say ‘we started this as a family, and we will finish it as a family” Eli said he was so proud of us all because we did.
Eli said to remember him as a little star in the sky, always looking down and will do his best to bring some rain to us.
Eli would like you to remember one thing…if you think you are having a crappy day, just remember all the little bubbas and their families on the cancer ward at the royal children’s hospital and the monumental fight they have on their hands…those are the things we should be worrying about.
Eli said to say that he loves you all very much.

Thankyou all once again for showing us that there is humanity in the world and for sharing the life of Eli Charlie Simpson with us.

Eli's photos



MELONS SHACK...

Im not sure whether we told you, but we are on a block of land which we were hoping to subdivide while eli was alive, with the intention of building our family home down the bottom of our block. For those that know us, we very eagerly renovated a 'shed' into a little home which has 2 bedrooms, a nice balcony, oodles of mozzies, a bathroom that is on the inside now (instead of a shed outside!)...we renovated when i was heavily pregnant, and we were pleased when we could finally move in (only 2 weeks before eli came into the world)!

We had the intention of building our family home, and keeping the little shack that we currently live in for family and friends to come and visit, and the possibility of holiday renting it...

when eli was diagnosed with leukaemia, we immediately decided the shack was not to be holiday rented, it was a little home that would be made available to not only our family and friends, but those families who have kids with cancer/leukaemia, bereaved families, as well as staff working on the 6th floor as a little bit of respite east of the city. We are stressing its not a HUGE house, but one that is certainly a home and filled with lots of love.

'melons cottage' is a small legacy in honor of our son, as well as all those parents who have walked a mile in our shoes and lost their beautiful children...

It is the absolute least we can do for those who are still fighting these insidious diseases or families who are still trying to grasp the fact that they now have a life without their beautiful son or daughter. Both pete and i acknowledge that we are in a unique position to keep both blocks and offer our small house for just a bit of respite for everyone...

Stay posted for some piccies of melon's shack as we continue to work on the house with loving and beautiful memories of our son. A place where hopefully one day you can sit and take stock of your lives, laugh and cry, and hopefully remember our beautiful son Eli Charlie Simpson...

A bereavement thanks...

For those who live a bit further away, pete and i put a bereavement thanks in the local paper, and feel like this would be a good vehicle to ensure that ALL of you get a thanks and mmmwwwahhh from us...

Bereavement Thanks
Simpson - Eli Charlie

We would like to extend a heartfelt thanks to everyone who helped celebrate the life of our son Eli. To all who helped us with our cat, cows, plants and house, thankyou so much. To those who found the time to cook us tucker and get it to us both at home and in Melbourne, we are grateful. To those who sent us messages of love, thoughts and support, we just so humbled to have you all in our lives and your beautiful kindness will never be forgotten. We will quietly continue our passion to raise the profiles of our charities in our community so they can continue helping families like ours.
Tom, Peter and Rachel - thankyou for helping us with Eli's service, a perfect fit for our family and finally, our work colleagues both past and present, for keeping in touch and supporting us so wonderfully.
Eli's legacy will forever live on...
Jodie and Peter Simpson.

More heavy hearts...and the best present you can give...

Hi everyone

sorry about the delay in getting back to everyone, we have been busy just doin 'stuff'...lots of gardening, bit of sewing and just generally trying to keep ourselves out of trouble!

We heard a couple of days ago that one of Eli's little mates "nicholas" passed away last sunday from his cancer. Nicholas was 2 and a bloody corker of a kid...we shared a room with nick and his mum belinda when we were first admitted to hospital back in October...

He was cheeky, very very bright and just loved his mum and dad. Nicholas will never be forgotten by his friends on the 6th floor or his mum Belinda, dad Michael and big sister Holly and the rest of his family and friends. We take comfort in the fact that he is now playing with Eli and Chad and the rest of the little poppets who have lost the fight with their disease.

Pete and I are still taking one day at a time and are often taken back to beautiful memories of our son. We thank everyone who still messages and calls us to give us a 'welfare' check to make sure we are going ok. People say time heals, but we are still struggling like it was yesterday...

I heard the blood bus was in town a couple of weeks ago, and decided that i would finally donate again (i hadnt been able to for over 2 years because of being pregnant and breastfeeding). So it was with great anticipation i walked up the steps, took my seat and remembered all the blood, platelets and plasma eli received when he was in hospital. 'full on' does not justify how i was feeling. But in saying that, i knew that my blood would help little people like eli and once i cried a few tears, i was actually proud that i could hopefully help kids and adults that rely on blood products. A needle and an hour of your time is NOTHING compared to knowing you are helping a life.

So, if you do feel like giving something a bit left of centre this christmas, head down to the blood bank and see if you can help. It really is easy. I must admit i did head down the path of "ewww...needles" then i pulled my head in and thought...why am i bloody whinging? A needle is nothing! Just make sure you drink heaps of water (makes yer veins all juicy) and have a good meal and it should be an ok experience. You can donate every 3 months...a very small price to pay to keep people alive!

i will get off my soap box now and hope that i have inspired just a couple of you to consider donating blood if you have not done it before. It really does make a difference! The blood banks number is 131495 or visit their website - www.donateblood.com.au

love to all and i will try and get eli's celebration stuff up soon.
the simpsons
xox

Hold tight!

Hi there everyone

I have been a little puzzled as to how to go on with Eli's blog...and im sure it will come to me in time. I would be happy to take advice/comments/suggestions. I was thinking it might be a wonderful tool to keep Eli's memory alive, particularly for fundraising events or any major things that happen for the Simpson family. The only reason i am wondering is that it is clear that we are still getting hits on the blog which means there is still some interest around.

I am hoping to update the blog soon to have a chat about eli's celebration which was held on the 21st November in bairnsdale. We are hoping to put on a picture file as well as petes and my speech we made.

Without going into too much detail, it was an awesome day and a wonderful opportunity to celebrate our son's life. While it was clearly sad at times, it was also full of smiles and some laughter which is exactly what we wanted.

Pete and i are still very very lost without our son. We miss him terribly but are determined to take tiny steps forward. We decorated our house with our christmas lights today...something we have done each year we have been together. While a teeny bit sad, we are looking forward to sharing the experience with all the little kids around the town who love looking at christmas lights, just like we did with eli. We would invite any of you to pop around and have a sticky beak any time...

Eli is home with us now and we feel a great sense of relief. All together again.

Best go and get some grub...and we will try and write about eli's celebration early next week.

Have a lovely weekend and keep the rain coming eli!

love and hugs
the simpsons
xox

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!
.

eli here

hi everyone
eli here...mum FINALLY let me get on and say hello...she reckons today is the best day that we have had yet so she let me on for a few minutes to say g'day.
i guess you already know that ive been a bit crook...some of the nurses reckon i look like someone who went to the tanning salon and it went REALLY wrong...mum tried to take a couple of pics of me, but they didnt work out so good. mum's calling me a little ooompalooompa but dad reckons im like a little cane toad...one of those tough little buggers you cant get rid of! I spose its better than being called a weed!
im feeling much better..sick enough to tell mum and dad i dont like vegies...but well enough to eat nearly a whole bag of twisties!
Twisties are bloody sensational...mum reckons i feel as passionately about twisties as she does about pina colada's - whatever they are :-)
im feeling ok...ive get a bit of a tummy ache every now and then and ive got weird things going on in my nappy as a result. the dr's have put me on some different medicines to try and clear up my tummy pain (and the nappy thing!)...so we will see if that is working or not in a few days.
Unfortunately we are pretty much back at square 1 with all of the tranfusions...whatever hit me has knocked my mojo around a bit and my platelets and blood have suffered, so im having lots of transfusions again.
im so special now that even my blood has to be warmed specially!
The liver queen came back for a visit last night and said that i was a very lucky little boy. My liver results are slowly trending down which is brilliant and im back to having a pick of things to eat. She said its going to take a while to get over this 'hit' and that im probably pretty lucky to be here at all. Very close call.
I feel like i have been on another planet for the past 2 weeks, and its only today that ive been able to sit up, watch mum and dad fuss over me like mad and take things in. i cant stay awake like i used to, coz i get pretty tired, but as mum keeps saying, its small steps...
mums looking cranky and she is telling me to get off the computer and have something to eat...ive got that nose tube in again to help me get my energy back. not to special for picking up chicks though...i think mum and dad are pretty keen to say goodbye to it, but it has been good getting some milk while i was sleeping all the time. i didnt feel like eating too much back then!
anyhoo..love to everyone. Ive been pretty lucky coz i had a visit from great nan and poppa from deniliquin, nana from bacchus marsh, kate and her mum b from home and tania from the leukaemia foundation...very special.
Micka from challenge has been keeping mum and dad entertained, and even bought in some krispy kreme donuts for them to munch on today...bloody sensational. i had a little bit but i was too full from all the twisties to eat too much!
mums cracking the whip, better fly before i get into real trouble!
love to all
eli
xox

Small steps forward

Hi everyone
mum here...
today is sunday and thankfully eli is making tiny steps forward. One of his liver tests has come down heaps (one of the ones that was hugely worrying) however another one that tests the bilyrubin in his liver increased a bit yesterday. But for most of them, they are continuing to track down thank goodness.
He continues to sleep heaps, although probably a bit more alert between sleeps. After seeing him this morning, he is starting to move around the bed a little bit more...an indication that his tummy is probably not so sore from his operations the other day. He has had heaps of fluid on board - so much that the other day his right eye closed up because he was spending most of his time on it. It looked like we had given him a black eye poor little thing. But we noticed that with a few blood products, he was able to get rid of a heap of fluid yesterday, and pete said that he had a huge nappy overnight. all the signs we are looking for.
The other thing that has come out of the blue is that he has a 'cold' antigen on his blood! Not really sure what it means for him, but now when he gets a blood transfusion, they have to heat it up as it goes through his line. It was picked up on july 27 (round the same time as when he got really really sick and we were here for 5 weeks)...but he hasnt needed any bloods since then so it hasnt been found.
we only found out about 9.30pm last nite, so we are keen to ask the dr what is it is all about and whether it has any ongoing impacts on him.
Eli is also pretty dependent on magnesium transfusions, clotting transfusions (platelets/plasma and cryoprecipitate) as well as blood now and also has to be topped up with 30ml of potassium a day. apparently it tastes gross and eli puked it all up last night.
We are happy that he is feeling a little better and not so dependent on codeine which is a relief as we really want to leave his liver alone to help it get better.
anyways...as always we will keep you posted and chat with you soon.
luv to all
the simpsons
xox

an update for you

Hi everyone
mum here...we wont beat around the bush, eli has been gravely ill for the past few days. His liver has been failing and has been on 'supportive care' (lots of products like plasma and platelets) to help him.
No one knows what is happening or why. Based on this 'unknown', he has had to have a liver biopsy - and another scar to add to his collection. It was an extremely anxious time as eli's liver was not helping his blood clot - an open cut and a piece out of it we were told was going to be hugely risky. Thankfully he pulled through and he was put back under today to have a 'pic' line put in (a skinny version of his noodles) so the staff can take blood for testing. Poor little bugger was running out of veins very quickly because of all the tests they were doing.
Eli is not out of the woods by any means, but seems to be a bit more spirited today and awake a bit more...because he has been fasted so much for all the tests to be run, he has not really eaten anything for a very long while. I think he will have a naso-gastric tube in to start to get some nutrition back into his little body and hopefully that will help his spirits and give him some energy.
The dr's are very good at not giving away too much info. After speaking with one last night, we were advised that if eli's tests results continued to rise, he would have been put on the liver transplant list. That was obviously extremely full on information for us and probably will be for you too. There is alot for us to consume and we let you know what is happening when we can.
The character of this baby is gobsmacking. At his absolute lowest point, he still had the ability to sit up for 10minutes and eat a biscuit and cheese before sleeping again for a further 6 hours. You could play a drum kit in here at the moment and it wouldnt register with him...
for all the time we have complained he has not slept, for once we just want him to be well enough to give us a hard time and not sleep!
Currently, eli is starting to get a fair bit of fluid on board so they are taking precautions to ensure that fluid stays off his lungs.
This might be a bit full on for you all, but i guess everyone that knows us, knows that we will not hide anything. Thats just the way it is...
We have just had the drs visit who have said that they are no closer to finding out what is happening with eli.
They have confirmed that we are still not out of the woods, but some of eli's liver functions have substantially become better. He still has a very long way to go.
They have just put the naso gastric tube in, and will be starting his feeds soon.
We will do our best to keep you posted...given the current circumstances it may take a while.
We have had the most unbelievable amazing journey and it really can be the most ridiculously frustrating place. We have experienced many highs, but also some major lows. We are not just looking after our own baby, but there are many others 'babies' here going through exactly the same thing.
The time we have spent in here with eli through this round of hospitalisation has highlighted to us there are some truly amazing parents looking after their own children and honestly, i know i have drawn strength from a number of them who have recently been through what we hope to never experience, losing their angels.
Our hearts go out to the mums, dads, brothers, sisters, aunts, uncles, nana's, pas, cousins and friends of our gorgeous mates Chad and beautiful Jasmine who have succumbed to their illnesses this week. We are thinking about all of you every day and we will stay strong to preserve your beautiful spirits which have left such an impression on the way we live our own lives.
Best go, and we will keep you posted.
I will try and encourage eli to write a few words in the next couple of days providing he is feeling ok.
much love
the simpsons
xox

Snoozy time!

Hi guys
mum here because eli is having lots and lots of snoozes at the moment.
Eli got another urinary tract infection which they discovered on sunday morning and started treatment for with antibiotics...while that was good, he got a really wicked rash which we were all a bit nervous about because of his past experience with graft vs host disease. Dr Karin (who is not ONLY a transplant guru, but also the rash guru) popped in first thing this morning and said it was probably a rash that has flared up due to one of the antibiotics he was given. It was a bit of a relief really, because by not having it, it will hopefully not make him feel so itchy. Its kind of like a huge dose of the measles but more red...
While we are confident that side of things are under control, we are pretty anxious about his liver function. We have just had the liver dr down to try and work out what is going on.
Basically it has come down to three things...drug interaction, viral infection or graft vs host disease. Very difficult when nothing is growing for them to have a 'light bulb' moment where they go...'thats whats causing it!"
The 'liver' guru of victoria is coming down later this afternoon for a chat and to check eli out. She sounds like she is hugely experienced, kinda like a dr karin of transplant!
We are getting the feeling that eli is becoming sick enough to have more hands on deck to try and work out what is going on. A couple of the function tests sees one completely off the charts, and another continually rising - obviously enough to be of major concern.
We have been told that the liver is a forgiving organ and can take a fair bit and that it will more than likely be a 'time' factor. the only real thing they can do is use 'supportive' medicine to help eli's liver work normally. Dr's have explained that there are things they can do and he is now receiving Vitaman K daily and plasma products to help eli's clotting capacity. There are are things being discussed but i think that will be a little down the track.
we are madly hoping they find a crazy virus (which is sooo weird because we havent been ANYWHERE for him to get crook!) and dearly hoping its not graft vs host disease. Its a really fine line. He has been taken off some of the medicines he was on to see if they are having a negative impact as well.
So here we are, looking forward to having some solid answers soon to help eli get better.
I dont want to sound all sooky la la, but this kid is a bloody inspiration to his dad and i. Life is pretty black and white for him and our job i suppose is just to try and keep him as comfortable as possible - which is pretty hard sometimes. We are constantly amazed at his resilience and huge heart to just keep on fighting. He is having enormous cuddles with us and we barely leave his side.
He is pretty crook at the moment and we hope he gets a break from hospital really soon. Buddah knows he needs it...i think we all do!
anyways...best cut the crap and do something...what we would do for a pretty normal life! mmm...ebay is looking good! Perhaps we can 'sell' ours and start again :-)

love and hugs to all from eli
mum
xox

Ahoy there melbourne!

hi guys
eli here...mum says she is sorry for not letting me onto the computer for a while...i have been 'resting'...
unfortunately after a positive start after my grommets were put in, i started to get a bit crook again on tuesday and mum and dad thought it would be safer to head back to melbourne which is what we did on wednesday...
We got back up here on wednesday arvo and i must admit i wasnt feeling really well. Dr steve did some stuff, and we were admitted to hospital on wed nite for 'observations' coz mum reckons i was doing some really weird stuff with my eyes and i was spending lots of time holding my head. Mum said she thought it was my ears playing up again and we would be safer getting them checked out again.
Dr steve saw my eye episodes and thought it might be good to get the brain people to check me out too.
Dr 'brain' came around on thursday and said that he thought i might have been having seizures - possibly due to all the medicine i have been having...also, i had to have a big brain x-ray...something called an mri just to try and work out whether i had anything happening in my head. The dr's also ordered a big needle in my back to suck some juice out of my spine - they call that a lumber puncture to run some tests on that stuff to see if they could grow ANY bugs. To date NOTHING has grown so it has been a bit frustrating for everyone.
I had a bit of a fever for about 36 hours, but it got better yesterday lunch time. Im still REALLY REALLY sleepy and have my eyes closed up to 20 hours in 24. Im not eating huge amounts and have just started puking the stuff i have eaten all up...i caught mum off guard and got her a gooden...it was funny!
So i had the brain tests on friday morning (in between sleeps) and the results of that came back saying i wasnt having any fits/seizures which we were all relieved to hear about. I was also put to sleep on fri arvo to have the brain scan and big needle to collect juice late on friday afternoon. Early indications are that they think my brain is ok, but still cannot explain why i feel so lethargic. All my blood results are showing that there is definitely something going on, as my white cells have shot up to 27 which means there is a cootie in me somewhere. The other pretty big thing happening is that my liver is not traveling so well. The dr's have done heaps of tests that are showing that my liver is finding it pretty tough to be normal at the moment with some of the results showing that it needs to have some medicine to try and make it better.
No one really knows what is happening with me, but all i know is that im feeling pretty flat and am not doing too much except for resting and giving the staff heaps coz they are poking me HEAPS with needles (coz my noodles are out!)...ive got little holes in me EVERYWHERE! mum reckons im so brave and she tells me all the time that i am MUCH braver than what she would be. Secretly i know that mum and dad just want something to 'grow' so the dr's can get on and make me feel better. But at this point NOTHING is growing at all.
From what i can gather, there are two trains of thought...one is that it is an infection of sorts - maybe a viral infection, and the other is all the medicines im taking might be having an impact on me because i have been on them for a long time. We are hoping something shows up soon so i can feel better. I heard Dr Rachel, Dr Matthias and Dr Keith say that it really is a process of elimination. We are really not sure how long we will be here...it will really depend on how im feeling. Cant believe its been almost 5 days already! Dad reckons we should buy shares in this place!
a huge thanks to aunty jen, cousin casey and neighbour deb for visiting my mum and dad...i know mum was really happy to see them. Also, a big thanks to aunty hayley who "ALWAYS" tidys up mums things thats she starts and for looking after bodsie for us. She helps us out HEAPS with just the little things...
also, once again to all of you who constantly message and let us know that you are thinking of us...just know that we think of all of you too...more than you will probably know.
Mum is excited and sad all at the same time coz she has met another family from 'home'. She says it feels really nice to talk about 'home' as well as sharing some experiences...she feels sad too because she says no family should have to go through what we go through no matter where they are from...they are ace though.
For those that ask about the twins, from what we understand they are doing really well and last we heard they are still at home going strong.
There is another little poppet that we met who also has jmml. Her name is jessica and she was the first of all of us to be diagnosed. She is an absolute stunner and is about 17 months old now...mum said we will try and get a picture of her...it would be nice to get a photo of ALL of us who have jmml, just because it is so rare and hugely weird that we have the 4 in a million all at the same time.
anyways...i am getting really tired and dad is also looking for a bit of a lie down...dad reckons im getting really good at giving cuddles in bed!
anyhoo...love to all and keep the messages coming.
we will try and keep you posted.
luv to all
eli
xox

homeward bound again!

Hi everyone...
eli here...after nearly a week back in melbourne, we are home again. I slept terrible and ended up in with mum and dad for big homecoming cuddles...somehow i think they are not going to be as forgiving tonight! I made the most of it anyways!
all is well...we had a pretty rough night last night so im a bit grumpy today. Mum and i did a little bit of 'stuff' this morning in town...bills to pay and letters to send, so we were quite busy. I was pretty happy to tag along and see the new sights of lakes entrance. We are still really careful not to go in majorly busy places to keep me protected!
my ears are heaps better, but the antibiotics are giving my tummy a work out (if you know what i mean!). Hopefully we will be off everything by friday and my tummy (and moods) will get a bit better!
mum reckons all the medicines this morning added up to about 16ml...a huge amount for a teeny tiny little tummy. No wonder i dont feel like eating!
Dr steve said my liver tests have come back a bit yuk, but i have to have another blood test on thursday and have the results sent through to melbourne. We are pretty positive and dr steve said its most likely caused by a drug interaction (fancy words for too many medicines not playing nicely with one another!)
we are heading back to melb next monday for another appointment, but for now, we are just keen to hang out as a family at HOME!
We also got a ripper letter from Challenge to say thanks for all the books that a few of you donated to them for their library...
the letter says:
"For many years now, Challenge has provided many forms of entertainment in both the Royal Childrens Hospital and Monash Medical Centre. On a daily basis staff distribute DVD's, Playstation and X Box consoles, Laptops with Internet access and recently have purchased a Nintendo Wii, all with the aim of entertaining the children staying in the ward and reducing the inevitable boredom.
we identified earlier in the year that a resource lacking within the wards were books. Kids of all ages love to read, and not everyone loves playing computer games to fill in their time.
Thankyou for answering the call and helping Challenge to put together an impressive library of books catering for all ages and interests. We now have over 600 top quality books at the office.
Once we have catalogued and labelled all of these books, the children within both hospitals will certainly have their hands full choosing which book they want to read first!
Once again, thankyou for your generous donation, we greatly appreciate your support.
Kind regards
David Rogers - Chief Executive Officer
Challenge - supporting kids with cancer.

So a huge THANKS to all of you once again for helping challenge...they like many organisations do an awesome job helping kids like me...big AND little!
The other thing that is ALWAYS needed are bandaids (and ive used my fair share of them this past week now that my noodles are gone!)...so if you think about it at your next shopping trip, please buy a box and get them to mum, or if you are in melbourne, call into the 6th ward and drop them off...i know kids like me will appreciate them...i actually scored krusty the clown on one arm and homer on the other! They are gorgeous!

Anyhoo, best fly...feeling a bit tired...gotta try and sneek a sleep in!
luv to everyone
eli
xox

Ahhh...the big city lights call for us again!

Hi everyone
mum here...so sorry its taken a while to get back to all of you, but like you know...there is NEVER a dull moment in the Simpson house!
after we returned on monday from our Dr appt, things were looking ok, although eli was still a bit 'off'...
tuesday morning came and eli woke from his morning sleep with a pretty high temperature (NOOOOO)...so it was off to lakes to see what they thought...they werent mucking around and teed up a trip straight to melbourne...
eli's temp hovered around 38.9 and we figured we should probably call melb.
Anyhoo, the ambo's took us to bairnsdale where we waited to catch an air ambulance to melbourne...after his first needle of anti's his temp came down, but he was still pretty irritable and very tired all the time.
we got to melbourne about 10.30pm that night and finally got to bed around 1.45am after spending a short time in emergency. They whacked a 'bung' in, gave some more antibiotics then we waited until the next day...
the dr's came in and were a bit puzzled about what had gone on. all we knew was that eli wasnt feeling himself and hadnt been for a couple of weeks, but they couldnt see anything wrong and thought it may have been a virus.
We stayed in supportive care (emergency accom situated at the hospital) and had a terrible night with eli...he didnt sleep at all and he was terribly grumpy and gave his lungs a good work out...
we filled him with panadol but it didnt do much good...weird..
anyhoo...eli woke up from his arvo sleep on thursday and screamed non-stop for about 2 hours. Pete took him back to the ward and luckily dr karin came in to see him. She picked up almost immediately that something was going on with his head. She said it was like he was dizzy and she noticed he kept tugging at his ears. Pete said that we had had them checked every time we came up coz we noticed the same thing. We were told they could see nothing and we thought it might have been teeth coming through.
Anyhoo....dr karin arranged the eye people and the ears/nose/throat people to have a squizz. She also added an anitbiotic which seemed to work pretty quickly. It was lucky she was there to see his 'meltdown'...
the eye people were looking for pressure behind his eyes, and the ear/nose/throat people were looking for signs of infection. The Dr saw what looked like a bit of fluid in his right ear and thought it might have been the cause of his grief. She left us, came back, had another look and said that she had booked eli in for his ears to be looked at in theatre and suspected he had an infection...in immuno-suppressed kids, they cant make 'pus' which is obviously something they look for!
so off we went to theatre late last arvo and they confirmed he had lots of fluid behind his drums and put grommets in each ear to help drain...
INSTANT relief for eli and mum and dad! Eli is a very happy, curious, playful and gorgeous little soul again.
Like Dr Karin said, we still have to keep an eye on the 'baby' stuff as well as the leukaemia stuff. When he gets temps, we worry about the 'big stuff'...while we kept saying he was tugging on his ears heaps, we honestly thought it was teeth and that there was something else 'brewing'...
when its all said and done, he has 2 new ears and boy is he happy for it...he is back to being awake and active more through the day and is sleeping like a kitten at night. YAYAYAYAYAYAY....
Eli is still on anti's through an IV (because the took his hickman out last wed - DOH!)...but he will hopefully swap to oral anti's early next week. FIngers crossed we SHOULD be home again early next week if it all turns out ok.
Oh...and funny enough he has started eating heaps again - thank GOODNESS!
best go and start the night stuff and hopefully get him to bed a little earlier than what he has been!
luv to all
the simpsons
xox

Dr says....

Hi guys

thanks will, chad and nick for writing on my blog...u guys rock! I hope you all get out of hospital really soon...we think about you heaps...
looks like everything is in working order, although im still pretty grouchy (and hands-on)...mum had a good chat with dr steve who said that all the bloods and stuff have come back really good...my platelets are like...200 or something! How awesome is that...
we had an angel flight again today...geez those guys do an awesome job..we left at 8.30am and were back at home by 4.30pm (thanks to donna who picked us up from bairnsdale coz the weather was a bit yukky!)...so yukky that i puked a couple of times!
so thanks a MILLION to angelflight...we just cant believe the generosity of these people...to help families like ours. It feels so nice to be in my own bed again thats for sure!
Nurse Aimee rang tonite and said that one of my anti-rejection drugs was a bit high (the one that gives me my wicked eyebrows!) so to start lowering it. Its pretty exciting but nerve-racking in a way because it means that all the drugs are slowly being weaned, which is really cool, but i know mum gets nervous coz i can still pick up stuff...
its a catch22 as mum would say!
the only other goss is that some of my other drugs are also being reduced too. I have been off my grub for a bit and ended up losing about 700g in a week! pretty big, but i briefly saw DR Karin who said that i was looking really good and had lost all of my weight. She didnt seem to worried, she reckons i had a fair bit to lose!
We have just had the best weekend ever! dad and me have done soooo much stuff! i helped him around the house, he has walked me heaps to give mum a bit of a rest...we all went out to the farm and visited the cows (that was so way cool, although because it is so dry down here at the moment, mum and dad have to sell a few - including tom piper!)...but they reckon we will hold onto moowhistle and stevo for a bit longer and we are hoping that moowhistle will get pregnant again soon...but stevo is getting toooooo big so mum and dad said that he has to get the 'snip' soon - dunno what that means :-) then we will fatten him up and get rid of him too...dad reckons we should invest in some shares (he says that with a giggle!)
i also got to the beach for the very first time...it was glorious, although i was quite taken by the fact that i could rub cheese into mums hair!
ahhh...the simple things in life are often the best!
anyhooo...best fly, its almost feeding time at the zoo and mum is nagging me to put the nappy in the bin. (she appears oblivious to the fact that i am completely immobile unless i am on her hip!)
luv to all
eli
xox
mum says that she will put some piccies up really soon...we have been FLAT out like blue-bum flies!

GOING...GOING....GONE!

HI there

eli here....
all is well in the world of the simpsons...i ended up having my noodles out on wednesday arvo...bit of a drama, but they are out and it is an AWESOME feeling not having it in anymore...mum held me tight, and i was very brave (and doped up on stuff that made me feel very woooozy!)...a couple of big yanks and out it came. After nearly 7 months of having it in, it seemed impossible that it would ever come out! But it has and we are all celebrating!
BUT thats not the ONLY thing we are celebrating...i am writing this from our HOME in lakes...we finally made it HOME HOME and BOY does it feel fantastic...
after a 6 hour trip (i had to have a pit stop of course) we finally made it home to lakes. mum said she cried like a baby and dad was keen to set up our fairy lights on the balcony...its just the little things i guess.
as mum says, our home looks like a bombs hit it...but we will get there...8 months of being away from home and accumulating HEAPS of stuff, will do it to you!
anyways...just wanted to let everyone know that our dream has come true and at this stage we are all safe and sound! We will have to travel to melbourne every monday at this stage for our 'bloods' and check up from dr steve...
thanks so much to the leukaemia foundation for having us so long in their north melbourne flat which we called home for 5 months. Their constant support has been absolutely fantastic and allowed us to be a family in our own space...thank you SOOOOO much.
thanks also so all our friends and family who have been with us and will continue to be for the next few months...u guys are totally special and we cannot thank you enough.
Thanks also to the special staff at the hospital for getting us to a point where we can go home...awesome.
thanks too to aunty hayley for helping mum and dad by 'spring' cleaning our house before we came home...it was a huge relief to not worry about cleaning (we have to pack all our stuff away now - yikes!
welcome to my new cousin "clare elizabeth' who was born on 30th september...i look forward to meeting her one day soon.
also big kisses to my pa in sale...it was so great to see him after soooo very long...
lastly, thanks to nana in bacchus marsh who helped us move our stuff and clean the house in north melbourne...she did a great job helping us.
betta fly
lots of love
eli
xox

little bit of news...

Hi everyone...
eli here...
ive been so-so...dont really know whats going on with me...but im pretty happy at the moment to give mum and dad a bit of grief overnight. Mum thinks it might be my molars coming through...they are a little lumpy, but it really sux cause i cant tell her anything! all i know is mum and dad a looking a little tired at the moment :-)

ive been up and down since sunday really...will just have to wait and see what happens...
what we DO know is that after yesterdays blood test, my platelets came back at nearly 160 something which is simply AWESOME...
huge huge huge for us...
Tomorrow (fingers crossed if i stay ok)...dr steve said that they will pull out my noodles...one big step closer to heading home. We are really just waiting to see what happens and are not holding our breath at the moment...mum spied a little rash today, so we are very keen to see dr steve tomorrow to see what he thinks. One good thing is that my roids have been dropped again so im on a tiny tiny amount...
dr steve also dropped my magnesium intake yesterday so i only have to do that twice a day which is good. It means that my levels must not be too bad.
anyhoo...best fly...its nearly time for my grub.
luv and cuddles to all
eli
xox

WOW...what a weekend we have had!

hi everyone...
eli here...
boy have we had a wicked weekend...i hung out with dad ALL day saturday and was just the bestest boy for him! He wonders what all the fuss is about when mum has me! Little does he know - he he he
mum got home and while very sad the cats lost, she still reckons it was the best thing ever that she has been to (even beats the smashing pumpkins concert!)...she had a ripper time and said that the hawks deserved to win coz the cats played badly and had HEAPS of opportunities to put the hawks away. But they didnt, and uncle dale was HUGELY happy with the win (as you would be!). It was a huge day for him...he caught the train all the way from lakes entrance to get to the footy, but he reckons its was worth the trip thats for sure!
mum said the highlight for her was just the experience and she would dearly like to thank CHALLENGE once again for the awesome opportunity. We were all in bed very early which was not a bad thing in hindsight because...

today is my birthday and i woke up around 12.15am and decided to celebrate a bit early! so i partied until about 1.45am and ended up kicking mum out of bed, and me and dad slept in the big bed - mum was sent packing to the single bed in my room! i slept until 6.30am and woke up but was a bit grumpy.
In saying that though, i have had an AWESOME day for my first birthday. Mum and dad took me to the park for a big swingy ding and then i opened up HEAPS of presents which was heaps of fun...i just loved the rattle of the paper, and playing with the boxes. dad took me for a really big walk and because of the really early morning, i had nearly 2 hours of sleep. When i woke up, i found nanna and grandad at my house and they were there to share my big day. While me and dad were walking, mum cooked some party pies, sausage rolls and little boys and i had my first cheezel...yummo!

I opened up some more presents and mum kept telling me about all the people who had called or sent messages to me for my birthday! boy there have been heaps and heaps so a huge thankyou to all of you who have had the time to send your messages through to me...i feel like a very special boy and really stoked that so many people have thought of us. So THANKS A MILLION!

anyways, its been a huge day, and im absolutely exhausted from my shenanigans so i best head off to bed to try and get some sleep so i am civil to mum and dad this arvo!

Tomorrow is another busy day...i will be back to the dr's to see what they reckon...we are very quietly hoping we can go home really soon. Lots of ducks have to line up for that to happen, but we are quietly confident things will happen soon and we can share the good news....

love and hugs to all and enjoy the photos!
lots of love
eli
xox

Me helping mum get ready for the big day!

pre-match entertainment. mum and uncle dale said that powderfinger ROCKED!

Mum and uncle dale enjoying the experience - THANKS CHALLENGE!

More grandfinal stuff

The game begins...and we all know the result!


happy birthday wishes from my good friend kate

just have to taste test my pressies of course...mmm...not so good!

me and dad on the swingy-ding...i love to sing when im swinging!La La La!

wow...sooo many pressies where to start...i have been SOOOOO lucky! Thanks everyone!

nanna and grandad from bacchus marsh came over to help me celebrate...

me and my birthday hat which i was happy to keep on!

Thanks for the birthday message wren!