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!

Like the best news EVER!!!

Hi guys
eli here...mum has been very humbled again today...she had a call from 'challenge' another non-government organisation that helps kids and their families with cancer...there is a groovy guy called micka who mum has had heaps of chats with while i have been in hospital...ANYWAYS...ages ago mum asked micka whether he could arrange a couple of rattle tins for her to take home with us so the community can support them with loose change...
mum thought challenge was ringing her about that, but the lady was just chit-chatting and asked mum what she was doing this weekend. Mum said dad had told her he was going to look after me so she could watch her beloved cats on tv hopefully win another premiership...she didnt watch much of the game last year coz she was looking after me - i came into the world about 15 hours before the big game started and she was a bit tired...she also said that she was ramping up birthday celebrations for me on sunday...
ANYHOO...
challenge said that they had 2 tickets to the GRAND FINAL! LIKE OHHHH MYYYYY GOOODNEEEESSSS! i saw mum take a big breath and she cried..then she swore a little bit, then she went numb, and then she was HUGELY happy.
I heard mum and dad talking very seriously, and dad decided to keep his word and stay home and look after me. He reckons we have all come too far for me to get sick again. He also reckons he wouldnt be able to enjoy the game coz he would be worried about me at home...so after more chatting (boy grown ups have lots of chats!)...mum decided to ask uncle dale to come to the game. We are all really happy coz uncle dale has been hugely supportive of us, mowed our lawns a couple of times and most importantly, has allowed aunty hayley to spend time with us when we really needed it (especially mum!).
So we are all looking forward to hearing how mum goes at the footy (knowing mum, she will have no voice coz she is not shy about barracking for her team in public!) and GOOOOO CATSSSSS!!!
a HUGE thanks goes to challenge for making mum feel like she has won the jackpot! I know that she will never forget saturday (and bore the rest of us with heaps of photos and stories!)...whichever way the game goes, just being there is a huge deal for mum. Me and dad will be fine...we will watch the game, eat chips, order pizza and have a few cans.
lots of love and kisses
eli
xox
THANKS CHALLENGE AND MICKA!

HELP WANTED...

website hit counters

if anyone can help me get this counter from the post side to the right hand side of the page, PLEASE LET MUM KNOW...she is a dinosaur at this stuff!

some more photos for you all...

me and dad on the swingy-ding at the local park...

oh how i wish this toy was a chocolate sundae...

hmmm...bored eli and dad in hospital waiting for treatment...what to do. Of course! Jump on the bedside table and go for a zoom...yipppeeee

zoom zoom zoom...and loving it of course!

yes, my shirt does say "lock up your daughters"...look out girls!

just hanging round waiting for hospital stuff

our trip to jubilee park in daylesford. we had soooo much fun!

getting some grub from mum!

me and dad checking out a bridge. check me out in the 'caboose'

walkin...walkin...walkin

me and my dad...he is just awesome!

mum apologises for the delay in pics...
but we have got some good ones (well we hope anyway!)
enjoy!
Just wanted to wish our great mate bella a very very happy birthday as well as my cousin bethany. Happy birthday girls!
luv
eli
xox

Good news for now!

Hi everyone
eli here...we got all the tests results back today...the 'fish' test where they look at my cells to see how many are mine (which we DONT want) and how much the new mojo is making....good news is that its all donor cells which means for now, my new mojo is doing its job and keeping my all infected stuff at bay. Apparently my immunity tests came back a bit better than expected too. Im not sure what it exactly means, but dr steve seems pretty chuffed about it. My cmv test also came back negative (exactly what we want) and now i just have to bide my time up here until all is absolutely dinky di then we can hopefully head home. It looks like that might be a couple of weeks away.
Other good news is that my platelets have popped up to 87 which is bloody awesome. Im feeling pretty good, but i still am a bit naughty with my sleep. mum says she doesnt know whats going on, but this morning we were all up 3.50am and i didnt really get to sleep until 10.30am...mum reckons panadol just hits the sides now!
Just wanted to congratulate poppa again. He and nan from deniliquin travelled to sydney to pick up his medal...he really does a fantastic job in his community, and works really hard for legacy and other stuff. We are all so proud of him (and nan coz behind a good man is ALWAYS a good woman!). We love them heaps and heaps.
We also wish my cousin chris the very best of luck too because he is off to afghanistan really soon. We know he will do a great job and be safe and will look forward to him coming home.
thats all the news in our world at the moment...will keep ya's all posted with stuff as it happens, but in general terms, im feeling generally well and am definitely looking forward to going home to meet my cows!
luv to all
eli
xox

Its done and dusted for another 100 days!

Hi everyone
i had my bone marrow test yesterday (big needle in my pelvis). It was pretty good all things considered...because i have VRE, i was last on the list so i had to wait yonks and yonks - until 12.30pm...it didnt turn out too bad though because mum was able to give me boobs at 9am and a sip of water at 10am so i didnt feel mega hungry...
i was able to pretty much sleep from around 10.30 until just before 12 so i didnt have to wait too long after that thank goodness, but boy did i enjoy my boobie juice after it all!
we had a really quiet day overall, even though it was dads birthday, grandads birthday and mum and dads wedding anniversary. mum and dad got pizza for tea (i enjoyed a bit of pineapple off the top!) and we were all in bed pretty early (i was a bit anxious yesterday and got mum and dad up around 5am!) so we were all well and truly ready for bed.
am heading across to our friends house to get some sleep for the day, so it will be fun to explore a new house and new area (and new places to walk!)
we will probably do that for the remainder of our stay here in melbourne, coz as much as we love the guys who are building the units (they really are a nice group of blokes who ALWAYS say hello to us as we walk to and from hospital), they are a loud bunch.
we havent really heard anything about our tests, all i know is they took heaps of blood from me yesterday for special tests. So hopefully monday will shed some light on how i am doing and how the new mojo is going.
I have to go to the hospital again tomorrow for some more blood tests to make sure the level of anti rejection drugs is right for me (hence my groovy eyebrows and moustache!). i think that happens twice a week at the moment.
anyhoo...best fly and will keep you posted...
love to all
eli
xox

1 more sleep

Hi there gang
Went for my FINAL ganciclovir transfusion today - YIPPEEEEE...man it felt good to have the last one done. I had the usual grease and oil change (noodles changed) and it all seemed to flow pretty easy today which was nice.
My levels are all pretty good, although the full blood count will be done tomorrow when i am sleeping. It will be an interesting day with the bone marrow stuff done but we are hoping that all the news will be good news and that my new mojo is working.
We had a lovely weekend. We went to lake jubilee in daylesford which was really nice. It was good to get out of town and celebrate some awesome spring weather. The blokes next door are pretty much working 6 days a week, so its constant heavy machinery and boy are they bloody loud! Mum reckons we might have to hang out at one of her friends houses during the day, just so i can get some sleep as im like a bear with a sore head when i dont get much sleep!
Im starting to feel well again, i had an off day yesterday and wasnt interested in eating too much, but im feeling much better today and back to my sprightly self. Mum and dad dont worry too much. The main thing they watch is my temperature, and thats been pretty good so we dont stress about it...
Dr steve said im tracking in the right direction and that it may be at least another 2-3 weeks before we can think about heading home. He reckons i have to wait until he is sure the CMV stuff has disappeared for now and that my platelets stay above 50. Apparently all my 'chemistry' today was looking good, and my immunoglobin stuff was really good so i dont have to have an infusion for that.
The other thing that is likely to happen before i head home is my noodles being pulled out...im not sure whether im hugely excited about that. My friend connor had to have his pulled out coz he ended up getting too many bugs in it. I reckon he feels loads lighter with that thing gone...
im definitely excited about being 'plastic' free but i guess i will feel a bit naked without it coz its been part of my body for so long! i know mum will be pleased with it gone, she reckons i give her too many heart attacks when i 'pretend' to pull it out..yikes!
Anyways...will keep you posted regarding the stuff tomorrow.
Enjoy the day
lots of love and hugs
xox

Just an update

Hi everyone...
eli here...hope everyone is well...
ive been good. We only have 1 cycle to go with the ganciclovir which is on monday and boy are we all HUGELY excited when that is over. Ive been on that for almost 6 weeks now...used to be twice a day, but as you know, its just monday, wednesday and fridays. Everything works on 'hospital' time, so sometimes we are in hospital for nearly 6 hours! It can be a bit boring waiting around, but mum and dad do a pretty good job entertaining me!
I had to have a needle in my belly today to try and get some wee out of me. YOUCH is all i can say, but i got a groovy wiggles bandaid! It was pretty important to get a 'clean' wee so the dr's could test it properly...mum and dad have tried to 'catch' a wee. Normally they are pretty good, but there is only so long they can wait around for me to go (if you know what i mean!)...ive also had a doodle bag, but that doesnt work very well and VERY uncomfortable...so as a last resort, the needle went in. Its kinda ok though, cause we needed to make sure that we had a wee that wasnt contaminated with 'other' stuff...will see how the results go!
Next tuesday is a big day for the simpsons...its dads birthday as well as grandads birthday (yep, they were born on the same day). I think everyone was excited cause i was supposed to arrive on the 18th of sept and people thought i might have arrived early, but it didnt happen. It would have been kinda cool, but its nice to have my very 'own' day.
Its also mum and dads 3rd wedding anniversary, and it would have been my great ninnys and pa's 58th wedding anniversary as well. It will be filled with mixed emotions i guess, given that ninny went to heaven and became an angel.
It will also be the day that the dr's will do all the '100' day tests that they normally do. I will be put to sleep and they will put a needle in my hips to get out some of my mojo to see what kind of a job its doing...and hopefully we will be all clear of leukaemia. Thats the main goal...to feel better and get the cancer out of my blood.
If all goes well, we are heading to daylesford tomorrow for a visit and have a big rest day on sunday.
Its been pretty hard at the moment because right next door, a big block of units is being built. So there is pretty much LOTS and LOTS of noise including huge trucks, loaders and big arse jackhammers that rock the foundations (and right beside the bedroom)...so restful sleep is a very very difficult thing to achieve at the moment. It means that we have to leave the house and go walking or for a drive just so i can get some sleep. Poor mum is pretty buggered and completely annoyed cause i was just starting to sleep a bit better and give her a bit of a rest during the day. Mum has tried to soften the blokes up by buying them some choccie biccies but it hasnt done too much good at the moment. So we are REALLY REALLY keen to get home now, back to the bell birds and kookaburras and PEACE AND QUIET!
So, have a lovely weekend everyone, perhaps a few raindances would be good!
Love and kisses to all
eli
xox

A tribute to my dad on his first fathers day!

Hi everyone...
we have had a pretty good weekend with lots of things happening...im feeling generally well, although sometimes in the morning i puke my medicines up because there are so many...my tummy can be a bit funny at times!
We had a good first fathers day yesterday and went for a walk out at anakie gorge. I was highly excited as it was the first time in ages i was able to smell all the gum trees without the plastic cover on my pram or a face mask. Mum and dad spoke with dr steve, and he made us all aware of the risks, but it was really important for us all to have an hour without anyone being around us in the bush...we felt soooo lucky, and boy did i sleep well last night!
I would just like to say a huge thanks to my dad for looking after me so well for the past 11 months. He has ALWAYS loved me with all he has, he has held me through the good times and the bad, he is always cracking jokes about mum which makes me giggle, he walks with me everywhere, takes me on the swingy-ding when the park is quiet (and doesnt let me play with the chains!), does 'boy' stuff with me like go to the tip when we were home, teaches me to dance (especially the shake-shake and more recently the thrusting of my hips like elvis - whoever elvis is!), lets me watch bodsie-puss (and laughs when i try and grab her tail!), showers/baths me every night and lets me pull his chest hair, plays with me while mum cooks tea for us, gets up to me through the night and helps me get back to sleep (especially in hospital so we can let mum rest), and sings me funny songs.
My dad is the best dad. I havent been an 'easy' baby from the beginning. The love and patience he shows my mum and me ALL the time is astounding considering all the things we have been through as a family. If i can be half the man he is when i grow up, i will be so proud.
I love you dad...
Eli
xox


Me being a baby 'koala' trying to munch on gum leaves - mmm yummo!

Me and my dad...i love you dad

I love the gum leaves!

a couple of more pics!

mums idol!!! again, a long story which included mum trampling over little kids in the starlight room-no shame! thanks to GARY ABLETT JNR and Micka...love ur work!

just me feeling happy!

mum confining me to the nappie box...its a great go cart!

a afternoon trip to woodend! very happy to be out!

me and my groovy hat-thanks aunty jen!

i cant go anywhere without my wiggles drum! thanks heaps cousin connor! xox



hi guys

for your enjoyment..

hugs and kisses

us
xox

its so nice to be out!

hi guys
everything is good here in the simpson household...we have enjoyed our freedom so much...ive been on HEAPS of walks since i got out...dad has been grouse and i reckon i should start a frequent walker program! i just love being out thats for sure...
we still have to go to the hospital 3 days a week for the drug 'ganciclovir' to help me get over the cmv bug i got. That runs over around 3 hours, still, its way better to be out than in thats for sure...
So where we can, we wrap up the dr's appointment and the medicine all at the same time.
Im feeling pretty good. My platelets are holding at around 20. While still really low, its good because im not needing any infusions. i think my blood is pretty normal which is also pretty good, cause as i have mentioned, the medicine im on can knock around my marrow, so i guess we are not expecting huge things with numbers at the moment.
I cant believe im nearly day 100! i think that clicks up around mid september. I will have to have a bone marrow aspiration again so they can do some tests to make sure everything is where its supposed to be. The Dr's said that while its good to get an idea, we cant get too hung up on it cause they said that most tests come back a fair bit sqew-if initially, its more the 6 month and 9 month aspirations to get a bit more excited about...
ive been a tiny bit unsettled over night...mum thinks its either a bit of a belly ache or a possibly another tooth (im giving mum a few love bites!)
so we are still very unsure as to when we can head home again...but we are definitely banking on AFTER 100 days for us...
while i would really love to be home for my first birthday, we are pretty sure that may not be the case as well...
we would like to say a huge happy fathers day for all the brilliant dads and grandpas and hope you have a wonderful day. mum and me are pretty keen to take my dad for a little bushwalk somewhere...that would be awesome, but we will have to wait and see.
anyhoo...best fly...we are heading out for a walk...they are building some units next door and boy are they loud!
love and hugs
eli
xox