one fine sunday!

hi everyone
hope you enjoyed the happy snaps...mums crazy on the camera!
its nice and early on a sunday...all is still going well. we are still waiting for that magic count to reach 500. we havent hit it officially, although im still feeling pretty good. i had a temp on friday morning, but i was ok after a couple of hours. nothing too serious.
we have been here for 35 days today and are definitely keen to get out soon. thanks to nana in bacchus marsh for the funky book, and lots of love and kisses to ninny and pa in sale.
just passin time by watchin heaps of dvd's, and playing with my toys! the transfusions have backed off a bit, but im still getting blood at least twice a week, platelets 3 times a week, magnesium and albumin. So lots going in - and mum said lots coming out too!
betta fly, brekkie is here..

love and kisses
eli
xox
ps, i forgot to say happy birthday to my friends jonah, darcy and amber who all turned 1 earlier this month! happy birthday guys!

some piccies as promised!

Me mucking around with mums glasses!

Bit of music therapy - I love singing!

No more tubes - YAYAY

Im big enough to sit on the weigh chair by myself!

Me and mum watching tv...

Trivial pursuit..its mums and dads vs dr's vs nurses vs Dr Steve (he gets his own peice of pie!!)...PSA's vs pharmasists. Nurses are currently in the lead!

Me watching the wiggles!

The day i had my one and only (touch wood!) temperature!

Me just hanging out - Ive got my 'giraffe' legs on!

Me with my card from the Wiggles..thanks so much!

me and mum practising with my mask...it was weird, but it tasted good!

Nurse alison changing my lines - this stuff never stops!!

Wow!

HI everyone...
its wednesday today and im feeling much much better! My counts are slowly slowly climbing, but still not quite at that 500 mark...hopefully tomorrow or friday...we are having bets, so we will see who wins...
Im still doing everything right...and i FINALLY come off my antibiotics which means no more alarms every 6 hours! Im also able to take my anti rejection drug orally tonite which means im officially down to 1 pump...my heparin! So me and dad are looking forward to a hopefully very peaceful nite! YAHOOOY!
I would just like to send a massive thanks to my friends in Bairnsdale who surprised us with a gorgeous package of 'stuff' including a wonderful poster of all our favourite people and things...it made us smile heaps! Thanks to Kate who sent some groovy tops, jonah for a wonderful bag of goodies - and yes mums are very good at eating lollies!!, darcy and amber who sent beautiful smiles, and donna, b and nat for putting a wonderful collection of stuff together...thanks so much!
I would also like to thank our friends paul, kelly and finn for the awesome collection of 'goodies'...the books and cd's are GREAT! and mum and dad sure enjoyed the chonks...so thanks HEAPS...
A big thanks too for Mel, Kev and Heath for dropping off stuff today, and for getting in touch with the Wiggles! I got a great card and lots of Wiggles goodies in a bag...i was absolutely stoked that they could be so kind to send that stuff...and we have read all the books already! So thanks guys...
We also got an invitation to attend a Leukaemia Foundation dinner to help celebrate the success of the Greatest Shave and their 10th year anniversary...a huge THANKS to all of you out there who helped us raise some awesome money for the Foundation this year...apparently when all the tallies were totalled, we collectively made the top 30! So well done everyone...I know that families like ours really appreciate it...
we also got some great news from the Breastfeeding association, but i will keep you posted on that one! Lets just say that mums boobs (and Mel) have inspired the association, but we will confirm details and hopefully tell you all about it next week. Very very exciting though!
we also spoke to Dr Karin today...she reckons (and fingers and toes and everything else crossed!) that we might be out early next week!! we are not sure on what happens after that, we still have to have THAT talk, but for now, its bloody hugely exciting, but i just have to continue to do well and have no temperatures...
im still getting platelet transfusions every second day, and bloods every 3rd/4th day, but its all good. I expect that will continue for a good few weeks after i get out...i think it takes a while...
anyhoo..best fly..feeding time at the zoo (not that i need too much...im feeling like a little budda!!)
thanks again to everyone, and mum promises to post some piccies tomorrow..
one last cheerio...to my ninny who is still really sick. We think about her every single day, and love her heaps...and to my great pa in sale who is in hospital with a bit of an infection...get betta soon pa!
lots of luv and hugs
eli
xox

Little steps!

HI everyone
Eli here...thought i would touch base just to let you know the latest goss...i have just had my naso-gastric tube out and BOY does it feel great! Mum and dad reckon i look weird, kinda like having a moustache shaved off!
Im still not sleeping great at all...Dr Karin came in to today and said that i was doing all the right things. I have started taking most of my medicine by my mouth (which is why i can take out the tube)...and im still eating really really well.
Mum and dad look very tired, as im probably on averaging 8-10 hours of very broken sleep a day...its hard cause i cant tell them whats wrong, but im sure they will work it out soon. I havent put together more than 2 hours sleep straight day or night for the past 6 nights, so we are all feeling very tired. Little steps forward!
My neutrophills are doing a great job and im at 430...only 70 to go and i will hit the awesome 500 mark which means 3 straight days of those and i will be able to venture into the bat cave...yahoo!
we have been locked up now for 29 days...amazing...i think mum was a bit over it yesterday, but she is feeling a little better and was back to her chirpy self!

tyfgbuinuybt jhg c - i was helping mum type!!
anyways, its nearly feeding time at the zoo, so i will catch you all later...we will try and get some piccies up soon!
love to all
eli
xox

Hi guys

gidday everyone
eli here...all is going well...my neutrophills are sitting at .26...i need 3 days of .5 to venture out of my hidey hole into the 'bat cave'...i am getting better with my counts going well everyday...it really is just one day at a time.

i have been eating HEAPS and mum reckons im totally back to normal. Mum and dad made the executive decision to stop my naso gastric feeds yesterday (it was only running at 5ml an hour anyways)...I was also weaned off the morphine over the past couple of days...mum and dad reckon i was heaps scatty and very very temperamental. I also gave them a bit of dido last night. I dont think i really slept much over the past 3 nights and was completely grumpy yesterday. I know mum and dad were keen to let me go 'cold turkey' and im feeling much more like myself today.

Aunty hayley came to visit..mum and dad reckons it was great to see her...she was very brave catching the train up from home by herself...she did a great job!

we would also like to say thanks to the gippsland grammar school. Aunty hayley showed mum and dad some footage she took of all the events...it made mum and dad laugh heaps...especially the noodle eating and air guitar competition! It looked like heaps of fun, and we were thinking of you heaps. Perhaps when i get better, i can go and meet a few of the gang who put it all together!

Overall, i continue to get stronger every day...Dr Karin said she was really happy with my progress to date...i still have heaps to go, but it looks like 'engraftment' of my new mojo is happening. I had a big blood test on Wednesday to see what was happening and whether it was my new cells doing their job. Hopefully we will find the results early next week. My weight is holding steady, and im back to eating more meat and vegies much to everyone's delight. Dr Karin said i was going to be one of the very few who left transplant without a naso-gastric tube and able to feed like a normal kid. Im pretty proud of that.

Anyhoo, i best fly...its nearly feeding time at the zoo, and im keen to catch up on much needed sleep (waking up every hour was pretty hard work for mum and dad!)
love and hugs to all
eli
xox

ps hope you enjoy the new video!

Its been yonks!

Hi guys
sooo sorry its taken a while to get back to you...ive been concentrating hard on getting better.
Its been a pretty big week, i got a bit of a fever and started some antibiotics last thursday...no biggie...they are there to help me get better while my new mojo starts working.
I havent had a temp since, but im still on the antibiotics for now.
We have had a quiet week...i had a fantastic visit from My great aunty jen, cousin casey and deb, their next door neighbour.
We have also had some good news, i have had some 'counts' as of sunday. They have come really really early, so the dr's are doing some tests today to see whether they are my new cells, or whether they are my old cells. I think they said that we should know some results in about a week. My neutrophills are starting to increase, so while things are happening earlier than most would, i guess either way something is happening.
Ive been up and down and having some sort of transfusion nearly every 2 days - particularly for platelets, which apparently is one of the last things to start producting by themselves. So if you feel like you are happy to give some platelets, please do, there are heaps of people in here just like me that need them, just like blood...Mum is the biggest wuss ever, but has donated before...it really is for a good cause.
So thats it for now...we are just concentrating on getting as well as i can. My belly is still pretty sore, but i am eating pretty much normally for now...mum has called me custard guts for a while-thats all i really wanted! But now, im happy to eat yummy vegies again, and mum is doing a good job in limiting my custard intake to only a couple of tins a day instead of about 5!!! i probably wont like custard when i get big!
I hope you are all well, and we look forward to hearing from you at some stage.

thanks so much for the comments...they always make us smile.
luv and hugs
eli
xox

enjoy the video!

we hope this brings lots of smiles...

love
eli, mum and dad
xox

Some photos!

Dr Marty - he comes in and says hello when he gets a chance, he was the one who diagnosed me with JMML at monash. He also does my bone marrow aspirations sometimes too...(and also a mad pies supporter!)

Transplant day - and its time to welcome my new mojo and a new life.

Me having a good giggle

Me and mum hanging out...

Playing with my toys...see, its just business as usual for now!

Its been a while

Hi guys

Its been a long time between boobies (drinks!)...and alot has happened.
I got all my superman juice...boy, there was HEAPS of it, seven days straight! I handled it really well though, and only puked once the whole time. We got a 'break' between the end of the chemo and transplant, so that was a pretty casual day.
On Thu 5th June, my new 'mojo' went in. i have attached a movie of our transplant 'story' so far...
My counts were awesome until just last sunday where they came down and i finally became neutropenic. I was doing really well until then, eating small amounts of food, and definitely keeping down all my booby milk which made mum happy!
On the actual transplant day, i was given lots of 'pre-meds' to help me adjust to the new 'mojo', and i was monitored very very closely. It all ran smoothly, and i was awake in my traditional 40minutes, and woke pretty grumpy and wondered what the fuss was all about.
So up until sunday, i had been eating well, and playing and living comfortably on panadol. Yesterday, the pain in my tummy got pretty bad, and i had to start some codeine to help me.
The nurses have said that i will get sick before i get better, so i guess we are in for the 'sick part'. We are surprised that two weeks has gone by already and we are into our third week. Im lucky so far, because my mouth is still in pretty good knick, but i do have some pretty bad tummy cramps, which are likely to get worse.
Basically, the chemo i had was used to get rid of my old 'mojo' and any cootie JMML cells that might be left in my body. The effects of the chemo usually hits around 7-10 days after, which is why im feeling crap now. We are hoping to see signs of my new marrow 'grafting' in the next couple of weeks, but before that happens, im likely to get very crook which is why Im locked up so i dont get any extra bugs from outside. I am definitely not out of the woods yet, in fact my 'hard road' is to come. There are things like veno-occlusive disease which can affect my liver, and graft vs host disease which usually dont show there ugly heads until between 2-4 or 5th week. I have to be honest and say that these things can be fatal in their most severist forms. So while mum has been very good at shielding lots of stuff from you guys and keeping things positive, there are certainly things that can happen through my transplant that could have yukky effects...thats just the way it is...
BUT...on a positive note, im doing really well for now, and they say that babies are very good at coming through procedures like this. Mum and dad still have me doing all the normal baby stuff which i love, reading books, playing on the floor, wrestling with my dad and pulling mums hair - OUCH!
Mum reckons her eyes look like 'pissholes in the snow' - sorry for swearing!, and dad is doing a great job looking after me at night so mums milk can keep brewing. Im so proud of my dad and mum. They are doing so well and being so strong. Even though i feel yuk at times, they can still bring a smile/laugh to my face.
Anyways...mum promises i will be able to get on the blog and update it a bit sooner next time, but only if im feeling well.
Thanks so much to the mothers group in bairnsdale for the gorgeous flowers...they are just beautiful. And thanks to our friends Kylie and Mel (and all their friends) for lending me 'new' toys to play with...i love the drum and the books...And dad says thanks for the cooking!
Like always, thanks so much for all your encouraging words. We think about it all the time.
Our love also goes to ninny in sale...there is not a day goes by without us thinking about you.
We would also like to say a MASSIVE congratulations to great poppa in Deniliquin who was awarded a OAM yesterday...absolutely fantastic and we are just so proud of you!
Please keep your stories coming from the 'real' world...it helps us forget about ours, even if its just for a little while.
lots and lots of love and hugs (and bloody rain)
ELI
xox

Hi from hospital

Me and dad just passing the time...thank goodness for DVD's!!!

Me sleeping in mums arms...i get pretty tired now...

Getting my nose dressing changed...ewwwww

The view from our room

Hi to all the Gippsland Grammar VCAL students...thanks for your message!

Me and dad zoomin round the room - making our own fun!

Certificate of authenticity...its gowns on for mum and dad...they are very stylish...mum would like to add some colour to them though!

Nurse "Kristen" changing my lines...its like playing with a ball of string!

Nurse Kristen hard at work!

Nurse "shanelle" just 'doin' nurse stuff!


Hmm what mischief can i get up too?


Hi there guys

Mum here...eli is having a well deserved nap!

We have had a big time over past few days. Eli has finished his busulphrin stuff ( I think thats how you pronounce it!), basically his first round of chemo. He had a day off yesterday, but today has seen the introduction of some more pretty potent stuff. He is taking lots of different drugs to counter as many side affects as they can so he is a regular little junkie! At the moment, he also has to have 6hrly baths so his skin doesnt burn with the medicine he is having, so yeah, the next couple of days are going to be full on.
But honestly, he is doing really well...he hasnt puked and is still pretty much eating well (although he hates hospital food)...he is on a 'clean' diet which means everything has to be prepared fresh, or out of a can. No reheating stuff, no yoghurt and my home made custard that wamma taught us to make...so yeah...he is a bit restricted to can food, but at least he is eating.
Thankfully, at this stage, he is still breastfeeding well.
We have another couple of days of this chemo stuff, with a well earned rest on wednesday before his new mojo goes in on thursday.
we are also very thankful that at this stage he has had no temperature which is terrific.
Like pete often says, thank goodness we are able to live in small spaces, and are actually finding the isolation thing quite ok at this stage. And the most important thing for us is that we are all together, and know that everyone is thinking of us everyday...it really does make a huge difference. So thanks for all your messages and calls of support. It can be very difficult to get on the phone to call you back as we really do get very busy.
Anyhoo, with love to you all from pete, eli and me.
xox
ps...enjoy the 'action shots!'