Hi there
its mum again...eli is still tucked up in hospital.
Today was a much brighter day for the simpsons...I was absolutely devastated this morning to find that eli's pulse had dropped to high 50's to 80's...extremely low for a little bubba.
Through the course of the day, many of eli's stats picked up and started doing things by themselves without complimentary support from infusions and stuff. Within himself, he was much perkier and ate a fair bit of grub this afternoon and tonite which is fantastic...his 'runs' have also pretty much got heaps better which is also an awesome thing..his little toosh is very very sore and needs a break.
The cardio team have said that while eli's pulse is very low, his structure and function are good. A 'red herring' presented itself in their investigations and revealed that Eli has a little hole in his heart...something which will rectify itself over time...bloody weird!
Anyways...we are still awaiting the graft vs host disease results, and the theory is now that the steroids he is on can be associated with a low pulse rate. Every day is a bonus...
thats pretty much it...hopefully we will have some more news tomorrow...off to bed now...
hugs
mum
xox
bug-a-lugs says 'whaaaa' to all too! xox
Wednesday, July 30, 2008
Tuesday, July 29, 2008
An update for you
Hi there everyone...mum here again
I wont beat around the bush...eli has been extremely ill, and continues to be so-so.
Eli ended up with an extremely virulent gram negative bug (grew in 4 hours)...which sent his body into a pretty full on toxic shock. His pulse was high at between 180-200 for nearly 13 hours, and a dangerously low blood pressure. To raise his bp, they pumped his body with fluid which worked for a short time, but he dropped again. In the emergency dept we were shifted from the security of the isolation room to resussitation - just in case. Unfortunately, he wasnt losing the excess fluid which was causing more things to happen internally. They gave him some stuff to bring his bp up and we were shifted to ICU.
The following morning we moved to the cancer ward where eli continued to be on and off and slept HEAPS...almost 20 hours a day. Eli's pulse dropped nicely on friday, and his bp raised to a good level, but needed oxygen occassionally to help him be comfortable.
Unfortunately on friday night, eli's oxgen level plummeted very quickly and the hospitals "MET" team were called. Eli was unresponsive, but fortunately came back around with the use of oxygen on full bore...we instantly had a squillion people in the room, and a very upset mum and dad. Not very nice at all.
In saying that...its absolutely amazing the quick response time for eli. Awesome really.
Eli was prescribed some medicine to make him wee to try and get the fluid out of him. Meanwhile a rash was developing rapidly. There were 2 trains of thought...because his little body was septic, it was thought to be a septic/toxic rash, or the possibility of graft vs host disease. Eli also developed the runs.
Sat/Sun were very difficult days, with lots of experiences with his oxygen dropping at the drop of a hat. Not an easy place to hang out in your bikinis on a banana lounge!
Unfortunately his pulse has kept declining as well...so instead of being between 100-140, we are now sitting at around 70-100, very low for a little tacker. Today we had a couple of heart specialists up to see what was going on. Still no answers, as all the main tests have come back clear, which is kinda cool, but is frustrating because we still dont know whats causing the dips.
The main thought now is that they pretty much have the infection licked, but perhaps the toxicity is still in his little body causing his bits to drop out every now and then. Also, Eli had a biopsy on his rash yesterday (yes, chicks still dig scars!) and we will hopefully know tomorrow whether his rash is caused by graft vs host disease. Its kinda ok if it is, because the drs like to see a bit of the disease...just not too much that it will effect everything else.
So, we just wait and see what tomorrow brings...im not going to lie...its has been extremely difficult and gobsmackingly scary at times. Thats just the way it is.
Lots to take in and we know that he still has a very long way to go, and were well aware that the whole experience is and will continue to be a massively rocky road. Whiles it very difficult at this stage not to think about the what if's...it still happens.
We are basically on edge 24/7 not knowing when the next drop will come, and hoping we never have the MET experience we had. They really are not pretty.
Eli in himself has picked up a wee bit...he is eating very small amounts of food, and still taking lots of boobs which is good. He had a tricky day today...nothing could satisfy him, but we take comfort in the fact that he is STILL watching the wiggles when he is not too tired, and that he can sit up and play with his toys, even if its just for a small amount of time. He is still extremely weak.
One of the nurses tonite said "ive just gone through his notes, it really could have gone either way".
We know we are lucky, but i will be honest and say that he is getting tired, but is still fighting with everything he has...
He is affectionately known as the 'budda' cause he is on heaps of steriods to help with the graft vs host disease, and other meds to help get rid of the excess fluid.
All up, we are doing as best as we can. Time and time again we are told we are so strong, and that we are doing an awesome job...but in all honesty, i think that ANYONE in this position would put all their thoughts and feelings aside to save and care for the ones they love...i guess just be there to pick us up when we come home...man, we wont know what to do with ourselves!
anyhoo...best get to bed...long days
thanks to everyone who is texting and sending beautiful messages. I know i say this all the time, but its all you guys that help us to help eli...we have the most amazing and most awesomest mates and family members in the whole wide world.
So from our hearts to yours...thanks a million.
love to you all
mum
xox
and kisses from eli too...the raindancing is doing the trick!
I wont beat around the bush...eli has been extremely ill, and continues to be so-so.
Eli ended up with an extremely virulent gram negative bug (grew in 4 hours)...which sent his body into a pretty full on toxic shock. His pulse was high at between 180-200 for nearly 13 hours, and a dangerously low blood pressure. To raise his bp, they pumped his body with fluid which worked for a short time, but he dropped again. In the emergency dept we were shifted from the security of the isolation room to resussitation - just in case. Unfortunately, he wasnt losing the excess fluid which was causing more things to happen internally. They gave him some stuff to bring his bp up and we were shifted to ICU.
The following morning we moved to the cancer ward where eli continued to be on and off and slept HEAPS...almost 20 hours a day. Eli's pulse dropped nicely on friday, and his bp raised to a good level, but needed oxygen occassionally to help him be comfortable.
Unfortunately on friday night, eli's oxgen level plummeted very quickly and the hospitals "MET" team were called. Eli was unresponsive, but fortunately came back around with the use of oxygen on full bore...we instantly had a squillion people in the room, and a very upset mum and dad. Not very nice at all.
In saying that...its absolutely amazing the quick response time for eli. Awesome really.
Eli was prescribed some medicine to make him wee to try and get the fluid out of him. Meanwhile a rash was developing rapidly. There were 2 trains of thought...because his little body was septic, it was thought to be a septic/toxic rash, or the possibility of graft vs host disease. Eli also developed the runs.
Sat/Sun were very difficult days, with lots of experiences with his oxygen dropping at the drop of a hat. Not an easy place to hang out in your bikinis on a banana lounge!
Unfortunately his pulse has kept declining as well...so instead of being between 100-140, we are now sitting at around 70-100, very low for a little tacker. Today we had a couple of heart specialists up to see what was going on. Still no answers, as all the main tests have come back clear, which is kinda cool, but is frustrating because we still dont know whats causing the dips.
The main thought now is that they pretty much have the infection licked, but perhaps the toxicity is still in his little body causing his bits to drop out every now and then. Also, Eli had a biopsy on his rash yesterday (yes, chicks still dig scars!) and we will hopefully know tomorrow whether his rash is caused by graft vs host disease. Its kinda ok if it is, because the drs like to see a bit of the disease...just not too much that it will effect everything else.
So, we just wait and see what tomorrow brings...im not going to lie...its has been extremely difficult and gobsmackingly scary at times. Thats just the way it is.
Lots to take in and we know that he still has a very long way to go, and were well aware that the whole experience is and will continue to be a massively rocky road. Whiles it very difficult at this stage not to think about the what if's...it still happens.
We are basically on edge 24/7 not knowing when the next drop will come, and hoping we never have the MET experience we had. They really are not pretty.
Eli in himself has picked up a wee bit...he is eating very small amounts of food, and still taking lots of boobs which is good. He had a tricky day today...nothing could satisfy him, but we take comfort in the fact that he is STILL watching the wiggles when he is not too tired, and that he can sit up and play with his toys, even if its just for a small amount of time. He is still extremely weak.
One of the nurses tonite said "ive just gone through his notes, it really could have gone either way".
We know we are lucky, but i will be honest and say that he is getting tired, but is still fighting with everything he has...
He is affectionately known as the 'budda' cause he is on heaps of steriods to help with the graft vs host disease, and other meds to help get rid of the excess fluid.
All up, we are doing as best as we can. Time and time again we are told we are so strong, and that we are doing an awesome job...but in all honesty, i think that ANYONE in this position would put all their thoughts and feelings aside to save and care for the ones they love...i guess just be there to pick us up when we come home...man, we wont know what to do with ourselves!
anyhoo...best get to bed...long days
thanks to everyone who is texting and sending beautiful messages. I know i say this all the time, but its all you guys that help us to help eli...we have the most amazing and most awesomest mates and family members in the whole wide world.
So from our hearts to yours...thanks a million.
love to you all
mum
xox
and kisses from eli too...the raindancing is doing the trick!
Friday, July 25, 2008
I SEE YOU....
Hi guys
mum here...been a very busy 24 hours. Eli woke thu morning with a pretty big temperature after an ordinary night. We got to the emergency department around 8.30am and found that eli had a very high pulse rate (200b/m) and a very very low blood pressure (plus a temp of 39.9 at its highest)...NOICE!
Anyways...they took lots of blood to try and grow cooties from it...and within a couple of hours, one of his bloods had grown a bug which is known to be a bit nasty and cause grief...we were moved to resus just in case, but eli was pretty crook. They gave him heaps of fluids to bring his blood pressure up, but on the flip side, he wasnt getting rid of the fluids...YIKES! so by 2.30pm, we still had low bp, high temp and lots of fluid accumulating in his little body...SOOO, the Dr's came around (cause eli also developed a really nasty rash)...at that stage we didnt know his blood was growing bugs, and the thought was graft vs host disease...
anyhooo...we got the news that it was a bug, and while they started some antibiotics as soon as we got in there, they weren't cutting it, so they tried some other stuff in the arvo which resulted in a decrease in temp for him. they also started some other medication to try and get his bp under control and the decision was made to move him to ICU (thought i would be clever with the title!)...just so they could observe him for the night and give him the best care with one on one nursing (the nurse overnight was a crack up...VERY VERY ASSERTIVE!)
He managed to stabilise overnight, and we were moved to the cancer centre in the wee hours of this morning after a very very very long night. Eli is picking up a bit...he is watching the wiggles and justine clark with just little grizzles and is managing to stay awake for a tiny bit longer each time he wakes...we are not getting past 20minutes sleep before he is waking at the moment...but the main thing is that he continues to do well at this stage..
the next steps are to grow the bugs out a bit more and start attacking them in the lab with medicine to see which stuff will work on it...once they find one that works, they will give it to eli to help make him feel better.
No one really knows how and when it happened, all that we know is that we are very lucky to have picked it up early. I was told by the nurse in charge this morning, had we been at home, it is unsure as to whether Eli would have made it through..not nice seeing your baby so sick. Honestly, i looked to the sky and said 'thanks ninny!'...just hope she can pull a few more strings to get him feeling better a bit sooner...
anyhoo...the main thing is that we are all ok for now...and we will do our best to keep you posted.
luv and hugs
mum - on behalf of eli
xox
mum here...been a very busy 24 hours. Eli woke thu morning with a pretty big temperature after an ordinary night. We got to the emergency department around 8.30am and found that eli had a very high pulse rate (200b/m) and a very very low blood pressure (plus a temp of 39.9 at its highest)...NOICE!
Anyways...they took lots of blood to try and grow cooties from it...and within a couple of hours, one of his bloods had grown a bug which is known to be a bit nasty and cause grief...we were moved to resus just in case, but eli was pretty crook. They gave him heaps of fluids to bring his blood pressure up, but on the flip side, he wasnt getting rid of the fluids...YIKES! so by 2.30pm, we still had low bp, high temp and lots of fluid accumulating in his little body...SOOO, the Dr's came around (cause eli also developed a really nasty rash)...at that stage we didnt know his blood was growing bugs, and the thought was graft vs host disease...
anyhooo...we got the news that it was a bug, and while they started some antibiotics as soon as we got in there, they weren't cutting it, so they tried some other stuff in the arvo which resulted in a decrease in temp for him. they also started some other medication to try and get his bp under control and the decision was made to move him to ICU (thought i would be clever with the title!)...just so they could observe him for the night and give him the best care with one on one nursing (the nurse overnight was a crack up...VERY VERY ASSERTIVE!)
He managed to stabilise overnight, and we were moved to the cancer centre in the wee hours of this morning after a very very very long night. Eli is picking up a bit...he is watching the wiggles and justine clark with just little grizzles and is managing to stay awake for a tiny bit longer each time he wakes...we are not getting past 20minutes sleep before he is waking at the moment...but the main thing is that he continues to do well at this stage..
the next steps are to grow the bugs out a bit more and start attacking them in the lab with medicine to see which stuff will work on it...once they find one that works, they will give it to eli to help make him feel better.
No one really knows how and when it happened, all that we know is that we are very lucky to have picked it up early. I was told by the nurse in charge this morning, had we been at home, it is unsure as to whether Eli would have made it through..not nice seeing your baby so sick. Honestly, i looked to the sky and said 'thanks ninny!'...just hope she can pull a few more strings to get him feeling better a bit sooner...
anyhoo...the main thing is that we are all ok for now...and we will do our best to keep you posted.
luv and hugs
mum - on behalf of eli
xox
Monday, July 21, 2008
A New car n caboose!!
Hi guys
quite an exciting weekend by my standards! mum bought dad a new caboose (well, we call it a caboose...one of those things i can sit in while dads carrying me around on his back!). it is AWESOME...dad carried me all around the flat while he swept and mopped the floor...its really cool looking down on the world from 6 feet 2 inches high! Yahooy!
i hope that you all got heaps of rain...it poured down here last night, and this morning while we walked to the hospital to get the standard grease and oil change...
we are heading back later this morning to see Dr Karin. mum reckons im looking a bit speckly and might need some more platelets..will wait and see. Ive gone almost a week without a transfusion tho...pretty cool really.
Mum said she saw Jared and Connors mum this morning...they are doing ACE! Connor is day 17 post transplant, and apparently is making ALL his own stuff already...the Dr's also did a special test and it all came back dinky di donor mojo...so they are really really happy. Jared has his new mojo today...so its a big day again for them! been there, done that and NEVER want to do it again...it hurts!
we have also been searching high and low for a new car...and finally found one...dad is as proud as punch and mum reckons it drives like a race car (only says that to razz dad up!)..its a 4WD and will replace the mazda on very long trips to melbourne...cause those people who know us...know that we have had the mazda for YONKS and YONKS and it is just starting to get a few too many km's on the clock to be travelling back and forth to melbourne when we head home...so while the new car is new to us, its a 99 holden rodeo which appears to be in pretty good knick...time will tell. Mum and dad reckons it just needs a new music box, and a couple of other small things and it will be pretty comfy for us to travel to and fro...
anyways...ive been feeling a little out of sorts, a bit grumpy and grizzly, so we will ask Dr Karin what is going on inside (if anything)...i also quickly saw nan and grand dad from bacchus marsh yesterday while dad dropped the car off. They looked good, although grandad had a cold so i had to stay pretty far away from them, coz i dont want to get sick.
it was nice to get out of the house though i must say..
anyways...best fly for now...
keep smiling, lots of hugs and canoodles
eli
xox
quite an exciting weekend by my standards! mum bought dad a new caboose (well, we call it a caboose...one of those things i can sit in while dads carrying me around on his back!). it is AWESOME...dad carried me all around the flat while he swept and mopped the floor...its really cool looking down on the world from 6 feet 2 inches high! Yahooy!
i hope that you all got heaps of rain...it poured down here last night, and this morning while we walked to the hospital to get the standard grease and oil change...
we are heading back later this morning to see Dr Karin. mum reckons im looking a bit speckly and might need some more platelets..will wait and see. Ive gone almost a week without a transfusion tho...pretty cool really.
Mum said she saw Jared and Connors mum this morning...they are doing ACE! Connor is day 17 post transplant, and apparently is making ALL his own stuff already...the Dr's also did a special test and it all came back dinky di donor mojo...so they are really really happy. Jared has his new mojo today...so its a big day again for them! been there, done that and NEVER want to do it again...it hurts!
we have also been searching high and low for a new car...and finally found one...dad is as proud as punch and mum reckons it drives like a race car (only says that to razz dad up!)..its a 4WD and will replace the mazda on very long trips to melbourne...cause those people who know us...know that we have had the mazda for YONKS and YONKS and it is just starting to get a few too many km's on the clock to be travelling back and forth to melbourne when we head home...so while the new car is new to us, its a 99 holden rodeo which appears to be in pretty good knick...time will tell. Mum and dad reckons it just needs a new music box, and a couple of other small things and it will be pretty comfy for us to travel to and fro...
anyways...ive been feeling a little out of sorts, a bit grumpy and grizzly, so we will ask Dr Karin what is going on inside (if anything)...i also quickly saw nan and grand dad from bacchus marsh yesterday while dad dropped the car off. They looked good, although grandad had a cold so i had to stay pretty far away from them, coz i dont want to get sick.
it was nice to get out of the house though i must say..
anyways...best fly for now...
keep smiling, lots of hugs and canoodles
eli
xox
Friday, July 18, 2008
more piccies
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Me playing pass the parcel-thanks darcy and amber!!
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My present at the end of pass the parcel - a 'moowhistle'..i play with her ALL the time...
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me and wamma reading one of her books...how boring..no pictures!
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ME and dad having a 'male bonding' moment in the shower...yahooy
Im feeling good...
hi guys
just to let you know, i went and saw Dr Karin yesterday and got a good report card...my platelets have stabilised at 49 (although i did receive a transfusion on monday)...but at least they are not getting used up so quickly now...and hopefully i can start making my own really soon...
My anti-rejection drug is still being tweaked...we havent quite the dose right yet, but i guess we will keep at it...im only on .5 now for my 'roids' - steriod which is pretty cool...cause that gives me hot flushes all the time!! i have also put on a bit of weight again, and crossed over 10kg! I think mum knows all about it! She is the one who has to carry me everywhere! Ive also been feeling heaps better and not crying and grizzling so much...i also surprised mum and wamma by sleeping 40 minutes yesterday arvo...they said they felt heaps more rested...so all is good in the simpson house...
dad is madly looking for a new car for us, and is pretty keen to get home so we can see our animals again...we really cant wait...its going to be so way cool...he said he is enjoying being back at work, but is missing being out in the field...i think we can ALL relate to that!
anyhoo, best fly...nearly time for my morning nap...we are experiencing some technical difficulties with our photos at the moment, so it may be a while yet before you get to see some more piccies of me...but we are trying to work it out!
luv to all, have a great weekend, and i hope that your footy teams win...go cats (and maggies!)
oh yeah...i also hope uncle phil gets better too..he has been a bit crook...
luv and hugs
eli
xox
just to let you know, i went and saw Dr Karin yesterday and got a good report card...my platelets have stabilised at 49 (although i did receive a transfusion on monday)...but at least they are not getting used up so quickly now...and hopefully i can start making my own really soon...
My anti-rejection drug is still being tweaked...we havent quite the dose right yet, but i guess we will keep at it...im only on .5 now for my 'roids' - steriod which is pretty cool...cause that gives me hot flushes all the time!! i have also put on a bit of weight again, and crossed over 10kg! I think mum knows all about it! She is the one who has to carry me everywhere! Ive also been feeling heaps better and not crying and grizzling so much...i also surprised mum and wamma by sleeping 40 minutes yesterday arvo...they said they felt heaps more rested...so all is good in the simpson house...
dad is madly looking for a new car for us, and is pretty keen to get home so we can see our animals again...we really cant wait...its going to be so way cool...he said he is enjoying being back at work, but is missing being out in the field...i think we can ALL relate to that!
anyhoo, best fly...nearly time for my morning nap...we are experiencing some technical difficulties with our photos at the moment, so it may be a while yet before you get to see some more piccies of me...but we are trying to work it out!
luv to all, have a great weekend, and i hope that your footy teams win...go cats (and maggies!)
oh yeah...i also hope uncle phil gets better too..he has been a bit crook...
luv and hugs
eli
xox
Tuesday, July 15, 2008
Dr says....
Hi guys
just an update...went to the dr's on monday and Dr steve said i was doing really well and was ticking all the boxes. I got the results of the special blood test today too...out of 300 cells they counted, 300 were donor cells, yahoooooy! So at this stage, the new mojo is working really really well...im being a bit of a bugger and only sleeping 40 MINUTES in a whole day which is driving mum crazy...20mins in the morning and 20mins in the arvo...i guess i get cranky a fair bit too and give mum a hard time. Its lucky wamma is over at the moment, cause she is looking after me a fair bit to give mum a bit of a break...
my counts have come down again but they are still at a good level...cause im making all my own stuff now. i havent had that needle which makes everything grow for ages, so my counts have done well to stay where they are. Dr Karin says as soon as i make my own platelets, there is a good chance i will be able to head home...i know mum and dad are talking to my new mojo every day...but i guess we ALL know that if something were to go pear-shaped, we are only 10mins from the emergency department, so we are definitely better off up here.
im still sitting up heaps, but not moving too much...just starting to swivel and show mum how clever i am. Sometimes i fall onto my tummy when im trying really hard to reach things...and i still love my dvd's and i still love to dance heaps too.
I made a bit of a mess in the washing basket...mum chucked me in there to have a little play so i could soak up some rays...mum was on the phone, and didnt realise i had done number two's and i kinda got it EVERYWHERE...i could hear mum say 'damn nappies' and wamma say 'damn kid!!' and i completely cracked it with them while they got me clean again...it took mum ages to calm me down and im sure she wanted to put some vodka in my vegies and tuna...although i know she would NEVER do that to me...the washing machine has been going full pelt for half the day...pretty funny really!
anyways...i best fly...and i will hopefully catch up with you all soon...
luv and heaps of hugs
eli
xox
just an update...went to the dr's on monday and Dr steve said i was doing really well and was ticking all the boxes. I got the results of the special blood test today too...out of 300 cells they counted, 300 were donor cells, yahoooooy! So at this stage, the new mojo is working really really well...im being a bit of a bugger and only sleeping 40 MINUTES in a whole day which is driving mum crazy...20mins in the morning and 20mins in the arvo...i guess i get cranky a fair bit too and give mum a hard time. Its lucky wamma is over at the moment, cause she is looking after me a fair bit to give mum a bit of a break...
my counts have come down again but they are still at a good level...cause im making all my own stuff now. i havent had that needle which makes everything grow for ages, so my counts have done well to stay where they are. Dr Karin says as soon as i make my own platelets, there is a good chance i will be able to head home...i know mum and dad are talking to my new mojo every day...but i guess we ALL know that if something were to go pear-shaped, we are only 10mins from the emergency department, so we are definitely better off up here.
im still sitting up heaps, but not moving too much...just starting to swivel and show mum how clever i am. Sometimes i fall onto my tummy when im trying really hard to reach things...and i still love my dvd's and i still love to dance heaps too.
I made a bit of a mess in the washing basket...mum chucked me in there to have a little play so i could soak up some rays...mum was on the phone, and didnt realise i had done number two's and i kinda got it EVERYWHERE...i could hear mum say 'damn nappies' and wamma say 'damn kid!!' and i completely cracked it with them while they got me clean again...it took mum ages to calm me down and im sure she wanted to put some vodka in my vegies and tuna...although i know she would NEVER do that to me...the washing machine has been going full pelt for half the day...pretty funny really!
anyways...i best fly...and i will hopefully catch up with you all soon...
luv and heaps of hugs
eli
xox
Friday, July 11, 2008
Farewell Ninny...but HELLO TOYS!
HI guys
its been a crazy week this week...im continuing to progress well, and had some more platelets and magnesium on Monday. It was a long day, we were at hospital around 8am and didnt get out until about 4.30! Ninnys funeral took place on Wednesday, so we drove down in the morning. Wamma looked after me and did a great job! We sung old macdonald had a farm, had some fish and chips! MMMM, yummo! Mum and dad said the funeral was beautiful and just the way that ninny would have wanted it. Pa did awesome putting it all together...Mum said she gave a speech for ninny and so did cousin casey, great grand-daughter shivanna and brad. Mum said as sad as it was, it was just ninny and thats all we can ask for!
We came home on wednesday night, and went back to see Dr Karin on Thursday again. My counts were pretty good, and i dont have to have the needle in my leg anymore which is kinda cool. My steriod has also been tapered which is good news, and my platelets and bloods were awesome, and i only had to be in hospital for half the day with a top up of platelets!
Dr karin reckons i should be making my own stuff soon, which means hopefully I wont have to have transfusions so regularly. I guess every appointment now means there is one less we have to worry about and we hopefully can start thinking about coming home!
I just wanted to thank our great mates kyles and mel for organising a 'get well' drive. We came home on monday to a huge envelope of card from all mum and dads work places...the words of love and support were AWESOME from EVERYONE...so THANKYOU SOOOO MUCH...its exactly what we needed after a huge day in hospital.
I would also like to thank my friends darcy and amber for sending me a lolly bag and a pass the parcel...man i had the absolute BEST Fun in the whole world and the paper tasted GREAT! i loved the the little pressies and 'moowhistle' the cow...mum, dad and wamma sure did love the chocolates! So thanks a million...
All of you guys completely ROCK!
The other exciting thing was that the STARLIGHT FOUNDATION delivered a 'wish box' for me to help me keep smiling. Boy, you should have seen all the cool stuff in it! I got trucks, a ball, wiggles stuff, cd's, dvd's and a big storage box to keep it all. We had heaps of fun unwrapping it all! So thanks so much to the sonia from the starlight foundation for making my day. Im sorry i was a bit grumpy, but when i got my mits on the toys, i was heaps happy. Its people like the starlight foundation that help grant wishes to seriously ill children like me to help them feel better! Thanks HEAPS!!!
Mum will try and get some piccies on the blog soon, but i continue to get stronger every day...and hopefully we will get some idea of how my new mojo is doing next week.
Thanks again to all of you for your love and support...
hugs, kisses and lots of rain
eli
xox
its been a crazy week this week...im continuing to progress well, and had some more platelets and magnesium on Monday. It was a long day, we were at hospital around 8am and didnt get out until about 4.30! Ninnys funeral took place on Wednesday, so we drove down in the morning. Wamma looked after me and did a great job! We sung old macdonald had a farm, had some fish and chips! MMMM, yummo! Mum and dad said the funeral was beautiful and just the way that ninny would have wanted it. Pa did awesome putting it all together...Mum said she gave a speech for ninny and so did cousin casey, great grand-daughter shivanna and brad. Mum said as sad as it was, it was just ninny and thats all we can ask for!
We came home on wednesday night, and went back to see Dr Karin on Thursday again. My counts were pretty good, and i dont have to have the needle in my leg anymore which is kinda cool. My steriod has also been tapered which is good news, and my platelets and bloods were awesome, and i only had to be in hospital for half the day with a top up of platelets!
Dr karin reckons i should be making my own stuff soon, which means hopefully I wont have to have transfusions so regularly. I guess every appointment now means there is one less we have to worry about and we hopefully can start thinking about coming home!
I just wanted to thank our great mates kyles and mel for organising a 'get well' drive. We came home on monday to a huge envelope of card from all mum and dads work places...the words of love and support were AWESOME from EVERYONE...so THANKYOU SOOOO MUCH...its exactly what we needed after a huge day in hospital.
I would also like to thank my friends darcy and amber for sending me a lolly bag and a pass the parcel...man i had the absolute BEST Fun in the whole world and the paper tasted GREAT! i loved the the little pressies and 'moowhistle' the cow...mum, dad and wamma sure did love the chocolates! So thanks a million...
All of you guys completely ROCK!
The other exciting thing was that the STARLIGHT FOUNDATION delivered a 'wish box' for me to help me keep smiling. Boy, you should have seen all the cool stuff in it! I got trucks, a ball, wiggles stuff, cd's, dvd's and a big storage box to keep it all. We had heaps of fun unwrapping it all! So thanks so much to the sonia from the starlight foundation for making my day. Im sorry i was a bit grumpy, but when i got my mits on the toys, i was heaps happy. Its people like the starlight foundation that help grant wishes to seriously ill children like me to help them feel better! Thanks HEAPS!!!
Mum will try and get some piccies on the blog soon, but i continue to get stronger every day...and hopefully we will get some idea of how my new mojo is doing next week.
Thanks again to all of you for your love and support...
hugs, kisses and lots of rain
eli
xox
Saturday, July 5, 2008
Its mum here!
Hi there
as you will see in eli's letter to you all, great ninny in sale (my beloved nan) died today from a short battle with pancreatic cancer. Pete (eli's dad) put this beautiful video together without us knowing about it and showed me a few days ago. Little did we know how poignant it has become.
I hope you enjoy it as much as i did, and tell those close to you how much you love them...
as you will see in eli's letter to you all, great ninny in sale (my beloved nan) died today from a short battle with pancreatic cancer. Pete (eli's dad) put this beautiful video together without us knowing about it and showed me a few days ago. Little did we know how poignant it has become.
I hope you enjoy it as much as i did, and tell those close to you how much you love them...
Some snaps -
Me, ninny and mum the day i got out of hospital...we love you ninny...
My cousin casey, my ninny and pa!
My gorgeous ninny
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let me outta here!
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pretty happy - thanks heath for the loan of the t-shirt...i really did feel like superman!
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Yay...1st steps outside the room!
We are free - VALE BETTY SMITH, our 'ninny'
Hi guys
been very busy...i was officially released on Tuesday 1 July when my neutraphills went above 1000! While it is very exciting, we still have to be so careful cause i cannot afford to get sick. Dr Karin and Dr Steve have still supressed my immune system so that my new mojo can work. It will be like that for a while yet and boy, do i have to take HEAPS of medicine! ewwww.
At last count, i have around 8 different sorts at night, including a needle that dad gives me in my leg...there is a little butterfly needle in my thigh which can be accessed every night. I have to have that needle to help my cells grow. Its a bit uncomfortable, but dad is pretty good, while mum pins me down..doesnt usually take long, and it just stings a bit. Hopefully we can stop that by the end of this week.
It is soooo way cool being out...when i was released, we jumped in the car and went to sale to see ninny. We didnt want to say much on the blog, but she was diagnosed with pancreatic cancer about 2 weeks before i went to transplant. Mum was especially devastated, cause ninny has always been like a mum to her. It was pretty hard before i went to transplant, coz we had to say goodbye to her. But ninny and mum kept talking while i was in transplant, and ninny said that she would hang on until we got out. She kept her promise, and we got to see her on Tuesday night. Boy was it fun...i played a bit with her glasses, and showed her how i could clap my hands. She was so proud, and was amazed to see that i still loved my mums boobs, and that i was a little porky! I sat in her lap and played with her for a while...she looked very beautiful. Mum said that ninny had been pretty crook, so it was awesome to see her feeling ok.
Unfortunately, ninny passed away this morning. all my family are devastated, but relieved as she fought her battle with so much dignity and is now finally resting. So all my love (and mum and dads) go to our pa and the rest of our family, as we all come to grips with not having our beautiful ninny with us anymore. As mum says, we have an angel watching over us now.
So join us while we smile brightly every day for the next week, as we celebrate our nans life. We will remember ninny, every day.
I have been in and out of hospital a fair bit to get platelets and magnesium transfusions mainly...they take about 7 -8 hours all up so they are long ones. Dad is looking at heading back to work on monday, so wamma is coming over to help mum out when we go to the hospital...hopefully it wont be for too much longer, but i reckon we will be down here for another 6-8 weeks, it all just depends on what my counts are doing. I have to have a big blood test on monday, that will see what my new mojo is doing and how much of it is the new stuff, and how much of my old stuff i still have in my system. the dr's are hoping that the nasty conditioning 'the crappy superman juice' i had cleaned up a lot of it, but we really just have to wait and see. I think we are all just happy to be out of home after 37 days in hospital - and apparently i was one of the lucky ones after being released after 26 days post transplant! Cool huh!
anyhoos, i had better go, nearly feeding time at the zoo.
love to everyone and we will chat again soon.
luv and hugs
eli
xox
been very busy...i was officially released on Tuesday 1 July when my neutraphills went above 1000! While it is very exciting, we still have to be so careful cause i cannot afford to get sick. Dr Karin and Dr Steve have still supressed my immune system so that my new mojo can work. It will be like that for a while yet and boy, do i have to take HEAPS of medicine! ewwww.
At last count, i have around 8 different sorts at night, including a needle that dad gives me in my leg...there is a little butterfly needle in my thigh which can be accessed every night. I have to have that needle to help my cells grow. Its a bit uncomfortable, but dad is pretty good, while mum pins me down..doesnt usually take long, and it just stings a bit. Hopefully we can stop that by the end of this week.
It is soooo way cool being out...when i was released, we jumped in the car and went to sale to see ninny. We didnt want to say much on the blog, but she was diagnosed with pancreatic cancer about 2 weeks before i went to transplant. Mum was especially devastated, cause ninny has always been like a mum to her. It was pretty hard before i went to transplant, coz we had to say goodbye to her. But ninny and mum kept talking while i was in transplant, and ninny said that she would hang on until we got out. She kept her promise, and we got to see her on Tuesday night. Boy was it fun...i played a bit with her glasses, and showed her how i could clap my hands. She was so proud, and was amazed to see that i still loved my mums boobs, and that i was a little porky! I sat in her lap and played with her for a while...she looked very beautiful. Mum said that ninny had been pretty crook, so it was awesome to see her feeling ok.
Unfortunately, ninny passed away this morning. all my family are devastated, but relieved as she fought her battle with so much dignity and is now finally resting. So all my love (and mum and dads) go to our pa and the rest of our family, as we all come to grips with not having our beautiful ninny with us anymore. As mum says, we have an angel watching over us now.
So join us while we smile brightly every day for the next week, as we celebrate our nans life. We will remember ninny, every day.
I have been in and out of hospital a fair bit to get platelets and magnesium transfusions mainly...they take about 7 -8 hours all up so they are long ones. Dad is looking at heading back to work on monday, so wamma is coming over to help mum out when we go to the hospital...hopefully it wont be for too much longer, but i reckon we will be down here for another 6-8 weeks, it all just depends on what my counts are doing. I have to have a big blood test on monday, that will see what my new mojo is doing and how much of it is the new stuff, and how much of my old stuff i still have in my system. the dr's are hoping that the nasty conditioning 'the crappy superman juice' i had cleaned up a lot of it, but we really just have to wait and see. I think we are all just happy to be out of home after 37 days in hospital - and apparently i was one of the lucky ones after being released after 26 days post transplant! Cool huh!
anyhoos, i had better go, nearly feeding time at the zoo.
love to everyone and we will chat again soon.
luv and hugs
eli
xox
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