Hi everyone
Jodes here! Just wanted to give all of you a massive THANKS for reaching that magic $3000 mark...it means that our executive director - fisheries victoria, Peter Appleford is officially a 'nude nut'! He said he would go bald for $3000, and thanks to all of you, we have done it...
we cant wait to see the piccies...'let the locks fall!'
luv and hugs
jodes
Thursday, February 28, 2008
Small update
Hi everyone
I think i told everyone that my white cell count was up a bit from previous weeks. I was asked by Dr steve to have another blood test today, and it confirmed that i was up to around 57 (normal people are usually between 5-15). Since i got out of hospital about amonth ago, i have been hovering around 45.
So, it changes things a little bit...no need for concern though! All it means is that we are going to be in Melbourne on Monday for a few days. Dr Steve rang mum tonight and said that he was keen for us to stay so we can have a chat with Dr Karin - transplant Dr, a tummy dr, of course to see Dr Steve for a general check up, as well as a surgeon who will look after me with a 'central line'...basically a tube that goes straight to the good stuff so they can give me chemo through it as well as take my bloods (yay, no more heel pricks when that goes in). No biggie and fairly standard procedure. the other thing the surgeon may need to do is take my spleen out...but that really is going to be dependent on a few things we will hope to find out about soon. In the words of bart simpson 'chicks dig scars!'
So, i guess next week is going to be pretty full on with stuff and we will do the best we can to keep you all updated. I think alot of it will definitely come down to my cell counts next monday, as well as what Dr Karin thinks. i know we are in the best hands in the world, and while we are all scared, we know that we are being looked after so well. The whole team looking after us are just so awesome.
My mum says try not to worry about the 'what ifs', lets just live with the info we have and take it day by day. (although she is the biggest worry wart and i know she worries about the what ifs all the time)...it will be a good reminder for her too!
on a positive note, being in melbourne is quite exciting from a 5 month old's eyes. i know mum is really keen to head to lygon street for some gelati and good pasta! Yummo (through booby milk of course!)
Anyways, we will keep you posted as best as we can...we all just want to say thank you so much for all your donations to the Leukaemia foundation...we are up over a whopping $7,000.
We also want to thank all of you again for the continued support you are giving us all...im loving all the hugs and kisses being sent my way ( i reckon mums lips are a bit sore too!).
look after yourselves, and thanks again
heaps of love, kisses and sunshine
eli
xox
I think i told everyone that my white cell count was up a bit from previous weeks. I was asked by Dr steve to have another blood test today, and it confirmed that i was up to around 57 (normal people are usually between 5-15). Since i got out of hospital about amonth ago, i have been hovering around 45.
So, it changes things a little bit...no need for concern though! All it means is that we are going to be in Melbourne on Monday for a few days. Dr Steve rang mum tonight and said that he was keen for us to stay so we can have a chat with Dr Karin - transplant Dr, a tummy dr, of course to see Dr Steve for a general check up, as well as a surgeon who will look after me with a 'central line'...basically a tube that goes straight to the good stuff so they can give me chemo through it as well as take my bloods (yay, no more heel pricks when that goes in). No biggie and fairly standard procedure. the other thing the surgeon may need to do is take my spleen out...but that really is going to be dependent on a few things we will hope to find out about soon. In the words of bart simpson 'chicks dig scars!'
So, i guess next week is going to be pretty full on with stuff and we will do the best we can to keep you all updated. I think alot of it will definitely come down to my cell counts next monday, as well as what Dr Karin thinks. i know we are in the best hands in the world, and while we are all scared, we know that we are being looked after so well. The whole team looking after us are just so awesome.
My mum says try not to worry about the 'what ifs', lets just live with the info we have and take it day by day. (although she is the biggest worry wart and i know she worries about the what ifs all the time)...it will be a good reminder for her too!
on a positive note, being in melbourne is quite exciting from a 5 month old's eyes. i know mum is really keen to head to lygon street for some gelati and good pasta! Yummo (through booby milk of course!)
Anyways, we will keep you posted as best as we can...we all just want to say thank you so much for all your donations to the Leukaemia foundation...we are up over a whopping $7,000.
We also want to thank all of you again for the continued support you are giving us all...im loving all the hugs and kisses being sent my way ( i reckon mums lips are a bit sore too!).
look after yourselves, and thanks again
heaps of love, kisses and sunshine
eli
xox
Wednesday, February 27, 2008
My friends Connor and Jared
This is Connor (in green) and Jared (in red).
They are my twin friends who both have
Juvenile Myelmonocytic Leukaemia (JMML) like me.
Tuesday, February 26, 2008
Latest Dr Info
This picture is Me, my dad and pilot Shaun who brought us home from Melbourne
(picture taken 26th feb 2008)
This is me with mum and dads boss Peter Appleford
(picture taken 25th Feb 2008)
Hi guys
we made it home safe and sound thanks to the terrific pilots that are affiliated with Angel Flight...my goodness, they are just simply "AWESOME". Sue and Mary were our 'earth angels' who helped us get to and from the hospital...and a big thanks to the Leukaemia Foundation who put us up for the night in a hotel...Ron's house in the city were packed, and we couldnt get a bed...
Had a big day yesterday...caught up with Dr Steve again. I have had some tummy issues again, and it looks like Dr Steve will try and get me into see a tummy specialist for next weeks visit. We started at the Royal Childrens Hospital yesterday...very busy with so many sick kids...it really puts life into perspective for you...Its nice though...and has a good feel. Lots of new nurses to 'win over' with my cheeky smiles.
i saw my friends connor and jarrod yesterday too..they are identical twins who are 15 months old with the same condition i have...they are so funny, and love to crawl around...hopefully we will see them once a week while we are there.
There is still no further news on transplant, but we are hoping to see Dr Karin who will outline the transplant stuff.
I also saw mum and dads boss - Peter Appleford yesterday. He is really cool. He said he would shave his head if mum and dad raised $3000 through their own sponsership...i reckon he is probably feeling a little nervous, because today, mum and dad are at a grand total of $2725...not far to go!
Anyways...enough now...i didnt sleep so well last night (up three times!!) so im hoping to catch up on a bit of shut eye now...I will try and get some more piccies up for you to see in a little while.
lots of love and cuddles
eli
xox
we made it home safe and sound thanks to the terrific pilots that are affiliated with Angel Flight...my goodness, they are just simply "AWESOME". Sue and Mary were our 'earth angels' who helped us get to and from the hospital...and a big thanks to the Leukaemia Foundation who put us up for the night in a hotel...Ron's house in the city were packed, and we couldnt get a bed...
Had a big day yesterday...caught up with Dr Steve again. I have had some tummy issues again, and it looks like Dr Steve will try and get me into see a tummy specialist for next weeks visit. We started at the Royal Childrens Hospital yesterday...very busy with so many sick kids...it really puts life into perspective for you...Its nice though...and has a good feel. Lots of new nurses to 'win over' with my cheeky smiles.
i saw my friends connor and jarrod yesterday too..they are identical twins who are 15 months old with the same condition i have...they are so funny, and love to crawl around...hopefully we will see them once a week while we are there.
There is still no further news on transplant, but we are hoping to see Dr Karin who will outline the transplant stuff.
I also saw mum and dads boss - Peter Appleford yesterday. He is really cool. He said he would shave his head if mum and dad raised $3000 through their own sponsership...i reckon he is probably feeling a little nervous, because today, mum and dad are at a grand total of $2725...not far to go!
Anyways...enough now...i didnt sleep so well last night (up three times!!) so im hoping to catch up on a bit of shut eye now...I will try and get some more piccies up for you to see in a little while.
lots of love and cuddles
eli
xox
Monday, February 25, 2008
Saturday, February 23, 2008
Wednesday, February 20, 2008
there really are ANGELS!
Hi guys
we went to melbourne yesterday and were very very lucky to get an 'angel flight' so we were up and back on the same day...mum and dad were so happy! Pilot "Tom Courtney" looked after us very well, and did a great job flying us to morrabin airport where we were then met by an 'Earth Angel' who transported us to the monash medical centre. We were in the air by 2pm and got home at 3.30! all we can say is WOW and thank the wonderful people who volunteer their time and planes to help people like us get to the Dr's in Melbourne..they truly do an awesome job.
All is stable from my side of things...my treatment will continue at the Royal Childrens hospital. We will hopefully meet the transplant guru in the next couple of weeks, so we can start talking tactics. at the moment, im on vitamen A which will help mature the leukaemia cells in some patients, so we will have to see if it works with me...its a bit of job getting the medicine out of the capsule in a form i can swallow it, but dad is doing us proud and has a system worked out.
anyhoo, i now have my flying legs, i didnt think i would be so lucky as to have a flight under my belt at four and half months...but im definitely making the most of it!
well, best be off...love to you all
eli
xox
we went to melbourne yesterday and were very very lucky to get an 'angel flight' so we were up and back on the same day...mum and dad were so happy! Pilot "Tom Courtney" looked after us very well, and did a great job flying us to morrabin airport where we were then met by an 'Earth Angel' who transported us to the monash medical centre. We were in the air by 2pm and got home at 3.30! all we can say is WOW and thank the wonderful people who volunteer their time and planes to help people like us get to the Dr's in Melbourne..they truly do an awesome job.
All is stable from my side of things...my treatment will continue at the Royal Childrens hospital. We will hopefully meet the transplant guru in the next couple of weeks, so we can start talking tactics. at the moment, im on vitamen A which will help mature the leukaemia cells in some patients, so we will have to see if it works with me...its a bit of job getting the medicine out of the capsule in a form i can swallow it, but dad is doing us proud and has a system worked out.
anyhoo, i now have my flying legs, i didnt think i would be so lucky as to have a flight under my belt at four and half months...but im definitely making the most of it!
well, best be off...love to you all
eli
xox
Wednesday, February 13, 2008
The big day - Melbourne
hi guys
we went to the hospital to find out the 'final' diagnosis for me. After heaps of testing to exclude a whole heap of other stuff, i have JMML.im ok about it, i think mum and dad are probably feeling a bit worse than i am...im just sick of the needles, and the sad eyes mum and dad give me when they have to hold me while im having them. i heard mum say that 'normal vaccinations now are going to be peice of cake!'
so where to from now? I definitely have to have a bone marrow transplant to save my life. the dr's are really confident they will find a match from either cord blood, or a donor. The hard part is to keep fit and well, and to continue to put on weight. mum reckons i wont have many problems doing that, ive got a 'good appeitite'...Dr Keogh, who is looking after me (and is a Carlton supporter, but dont hold that against him!) reckons if we are lucky, the transplant may take place in the next 3-6 months. it would be good if we could, i want to be well for my first birthday - got a few good looking chicks to chat up! The transplant will depend on a whole heap of things, but we are all feeling positive...i will be like the 'boy in the bubble' once i have the transplant for a while until i get better, i cant afford to get crook as i will have no immune system.
once again, me, mum and dad would like to thank everyone for their love support, thoughts, prayers and stuff. We feel so supported through this difficult time, and i know that mum and dad really appreciate it...and its making their job to look after me much easier knowing that they have all of you gang to call if they are having a crap day.
My colitis has cleared up for now, and im eating well...i was 7060g (just a smidge over 7kg) last week, so im putting on weight again which is good. All my bloods have stabilised, but they are keeping a very close eye on me. i feel like im in the best hands for my condition...it really is as rare as hens teeth, but i know that everyone is looking out for me, and the Dr's, nurses and support team from Monash are awesome...the driving gets a bit tiring, but i try and be on my best behaviour for mum and dad!
Anyways, best go to bed, its getting late (and mum is keen to hit the hay!)
thanks for all the comments and stuff, it really does keep all of us going.
lots of love
ELI
xox
we went to the hospital to find out the 'final' diagnosis for me. After heaps of testing to exclude a whole heap of other stuff, i have JMML.im ok about it, i think mum and dad are probably feeling a bit worse than i am...im just sick of the needles, and the sad eyes mum and dad give me when they have to hold me while im having them. i heard mum say that 'normal vaccinations now are going to be peice of cake!'
so where to from now? I definitely have to have a bone marrow transplant to save my life. the dr's are really confident they will find a match from either cord blood, or a donor. The hard part is to keep fit and well, and to continue to put on weight. mum reckons i wont have many problems doing that, ive got a 'good appeitite'...Dr Keogh, who is looking after me (and is a Carlton supporter, but dont hold that against him!) reckons if we are lucky, the transplant may take place in the next 3-6 months. it would be good if we could, i want to be well for my first birthday - got a few good looking chicks to chat up! The transplant will depend on a whole heap of things, but we are all feeling positive...i will be like the 'boy in the bubble' once i have the transplant for a while until i get better, i cant afford to get crook as i will have no immune system.
once again, me, mum and dad would like to thank everyone for their love support, thoughts, prayers and stuff. We feel so supported through this difficult time, and i know that mum and dad really appreciate it...and its making their job to look after me much easier knowing that they have all of you gang to call if they are having a crap day.
My colitis has cleared up for now, and im eating well...i was 7060g (just a smidge over 7kg) last week, so im putting on weight again which is good. All my bloods have stabilised, but they are keeping a very close eye on me. i feel like im in the best hands for my condition...it really is as rare as hens teeth, but i know that everyone is looking out for me, and the Dr's, nurses and support team from Monash are awesome...the driving gets a bit tiring, but i try and be on my best behaviour for mum and dad!
Anyways, best go to bed, its getting late (and mum is keen to hit the hay!)
thanks for all the comments and stuff, it really does keep all of us going.
lots of love
ELI
xox
Thursday, February 7, 2008
Some more piccies
This is me and mum just hanging out in the garden at bairnsdale! Notice the geelong socks! Go cats
Here i am, happy with the world, at about 3 and a half months of age.Wednesday, February 6, 2008
Shave for a cure - Tally update
A combined total of $7665has been raised as of 2pm, 11 March 2008. Wow
Thankyou guys soooo much for your generous support. This money will be so useful for the Leukaemia foundation!
We have had so much support! just to let you know, WAMMA - Grandma from WA, Aunty Hayley, Aunty Jen from Sale, Matt Bateson - Fisho from Lakes, great mate Belinda Stevens from Fisheries Victoria and Peter Appleford - Executive Director, Fisheries Victoria have also put their gorgeous heads on the line...Matt agreed to shave if tally reached $1250, Aunty Jen agreed to shave if we got to $2000, Belinda Stevens agreed if we reached $2500...and the latest edition - Peter Appleford (our BIG boss!!) agreed if we reached $3000!!!
The tally has now reached over a gobsmacking $7000!!
There is going to be a few good looking 'nude nuts' walking around Gippsland, the big smoke (Melbourne) AND WA!!
We will try and keep you updated on everyones progress to raise money, and will keep their tallies shown here on this blog site. Just remember, every little bit counts, and we are just so thankful for everyones donations to such an awesome cause.
Pete: $3560
Aunty Hayley: $1305
WAMMA: $1800
Aunty Jen: Rallying HARD!!
Belinda Stevens:$1000
You can leave comments on their shave pages if you want...just search for 'Erica Loveless' - Northam, 'Hayley Talbot' - Lake Tyers Beach, 'Jenny White' - Sale, 'Belinda Stevens - Northcote'
"LET THE LOCKS FALL!!"
Thankyou guys soooo much for your generous support. This money will be so useful for the Leukaemia foundation!
We have had so much support! just to let you know, WAMMA - Grandma from WA, Aunty Hayley, Aunty Jen from Sale, Matt Bateson - Fisho from Lakes, great mate Belinda Stevens from Fisheries Victoria and Peter Appleford - Executive Director, Fisheries Victoria have also put their gorgeous heads on the line...Matt agreed to shave if tally reached $1250, Aunty Jen agreed to shave if we got to $2000, Belinda Stevens agreed if we reached $2500...and the latest edition - Peter Appleford (our BIG boss!!) agreed if we reached $3000!!!
The tally has now reached over a gobsmacking $7000!!
There is going to be a few good looking 'nude nuts' walking around Gippsland, the big smoke (Melbourne) AND WA!!
We will try and keep you updated on everyones progress to raise money, and will keep their tallies shown here on this blog site. Just remember, every little bit counts, and we are just so thankful for everyones donations to such an awesome cause.
Pete: $3560
Aunty Hayley: $1305
WAMMA: $1800
Aunty Jen: Rallying HARD!!
Belinda Stevens:$1000
You can leave comments on their shave pages if you want...just search for 'Erica Loveless' - Northam, 'Hayley Talbot' - Lake Tyers Beach, 'Jenny White' - Sale, 'Belinda Stevens - Northcote'
"LET THE LOCKS FALL!!"
Another idea for helping
Hi everyone,
We have another idea for a way all the runners and walkers out there can help. Participate in the Run for the Kids 2008 on March 30th. This is a fundraising event for the Royal Childrens Hospital and ties in with the Good Friday Appeal.
Help by entering the event:
The Herald and Weekly Times has once again given a commitment that a substantial proportion of the entry fee will go directly to The Royal Children's Hospital Good Friday Appeal.
$21 of every $35* entry fee for the 14.14km event
$16 of $30* for the 5.76km event *All entry fees include $4 postage and handling. Entrants also go into the draw to win a Mazda car.
Help by sponsoring a runner/walker:
In the Herald Sun/CityLink Run for the Kids 2008, all participants have the opportunity to be sponsored by family, friends and workmates. All money raised by sponsored runners will go to the Good Friday Royal Children's Hospital Appeal.
For more information: http://www.runforthekids.com.au/r4k/
We have another idea for a way all the runners and walkers out there can help. Participate in the Run for the Kids 2008 on March 30th. This is a fundraising event for the Royal Childrens Hospital and ties in with the Good Friday Appeal.
Help by entering the event:
The Herald and Weekly Times has once again given a commitment that a substantial proportion of the entry fee will go directly to The Royal Children's Hospital Good Friday Appeal.
$21 of every $35* entry fee for the 14.14km event
$16 of $30* for the 5.76km event *All entry fees include $4 postage and handling. Entrants also go into the draw to win a Mazda car.
Help by sponsoring a runner/walker:
In the Herald Sun/CityLink Run for the Kids 2008, all participants have the opportunity to be sponsored by family, friends and workmates. All money raised by sponsored runners will go to the Good Friday Royal Children's Hospital Appeal.
For more information: http://www.runforthekids.com.au/r4k/
The Great Shave update - A handful of people have already sponsored Pete to lose his mop of hair, thanks to everyone for their generous support with this to-date. We're hoping to encourage even more support for this wonderful cause and perhaps exceed our target figure of $500!
Tuesday, February 5, 2008
Just a quick update Hi everybody, I travelled to Melbourne again on Monday evening (4th Feb) with mum and dad, to be there for my appointment on tuesday (5th Feb) at 10am. We stayed at the Ronald Mcdonald house agian for the night. I had some more blood tests done. They are stable, so we were able to travel back home again, after having spent 5hrs having the blood tests done and visiting the Dr.
Dad, mum and I will have to travel to Melbourne weekly for the next 4 weeks to have regular check ups and blood tests done. Looks like we will have the official diagnosis next Tuesday the 12th February.
This is Aunty Hayley's Favourite picture
it was taken in early Janurary 2008.
Monday, February 4, 2008
How people can help and/or support
Alot of people have been asking if there is anything they can do to help and/or support Jodie, Peter and Eli. There are a number of ways that people can help leukaemia sufferers in general, such as:
- Donate blood - About a third of donated blood in Australia is used for cancer patients. Of these, patients with blood cancers such as leukaemias, lymphomas or myeloma require a significant amount of donated blood for life-saving treatment. If you would like to give blood, contact the Australian Red Cross Blood Service on 13 14 95, their national donor information line.
- Support an event such as the World's Greatest Shave - this March Peter Simpson is putting his head next to the clippers on behalf of Eli. Follow this link to sponsor and support Peter:
http://www.worldsgreatestshave.com/profile.php?id=390035 or register yourself to shave your head or legs or colour your hair; check the website for more details - http://www.worldsgreatestshave.com/ - Register as a bone marrow donor - visit the Australian Bone Marrow Donor Registry website for more information - http://www.abmdr.org.au/
- Support McHappy Day - While Ronald McDonald House Charities (RMHC) is an independent charity, McDonald's Australia Limited plays a vital role by covering all administration and management costs ensuring every cent donated to RMHC can be spent on programs helping seriously ill children and their families. The Simpson family have already had a stay at one of the RMHC centres and will probably be staying there when Eli has his regular blood tests in Melbourne.
As things tick along and we find out more about what medical procedures Eli will need to be scheduled in for, there may be further things people can do to help.
Saturday, February 2, 2008
Eli Charlie Simpson
Eli Charlie Simpson was born on the 28th September 2007 at Bairnsdale hospital. His mum (Jodie) and dad (Peter) are totally besotted with him, and the rest of the extended family plus friends also think he's pretty special.
Eli 'was a bit crook' (to use his mum's phrase) in January 2008 (had blood in his poo) and was taken to hospital for an ultrasound and x-ray on the 23rd January. These identified that he has an enlarged spleen. He then had a blood test and later that day the Doctor called Jodes to tell her that he thought Eli had leukaemia. Jodes called Peter (who was up at the block with the cows) and told him the news - both were obviously devastated.
They were asked to take Eli to Melbourne that night to the Monash Medical Centre. So off they went to Melbourne and had a terrible night as they checked in to the hospital around 10.30pm and Eli had different tests done and they were hanging around the hospital for most of the night. This was the beginning of a rough few days at the MMC where Eli had blood taken every day so that the Doctors could understand more about his illness. Eli developed a bit of a high temperature on the friday (25/1/08) so was given antibiotics to help him fight an infection ('cos his white cell count is so high and his body is flat out dealing with the other illness). Eli also had a blood marrow test which was pretty rough on all the family - lucky for dad and mum the staff at the MMC were great.
By Tuesday 29th January we were allowed to go home. The probable diagnosis (90% surety) was then leukaemia but the dr's wanted to do a few more tests to be 100% sure, so we were asked to come back the next week. In the meantime Eli was still having tummy problems so on 1 February off we went to Dr Goss in Sale. There they found that that Eli has colitis (belly bugs are out of kilter), so Eli was given some medicine for that and is feeling a bit better.
Jodes and Pete have been talking about Eli and his illness at length. Its a huge thing to have a bone marrow transplant but it may be that its his only chance of survival. There's also the possibility that he'll need blood transfusions and maybe chemotherapy as well as the weekly blood tests to monitor his illness.
Eli 'was a bit crook' (to use his mum's phrase) in January 2008 (had blood in his poo) and was taken to hospital for an ultrasound and x-ray on the 23rd January. These identified that he has an enlarged spleen. He then had a blood test and later that day the Doctor called Jodes to tell her that he thought Eli had leukaemia. Jodes called Peter (who was up at the block with the cows) and told him the news - both were obviously devastated.
They were asked to take Eli to Melbourne that night to the Monash Medical Centre. So off they went to Melbourne and had a terrible night as they checked in to the hospital around 10.30pm and Eli had different tests done and they were hanging around the hospital for most of the night. This was the beginning of a rough few days at the MMC where Eli had blood taken every day so that the Doctors could understand more about his illness. Eli developed a bit of a high temperature on the friday (25/1/08) so was given antibiotics to help him fight an infection ('cos his white cell count is so high and his body is flat out dealing with the other illness). Eli also had a blood marrow test which was pretty rough on all the family - lucky for dad and mum the staff at the MMC were great.
By Tuesday 29th January we were allowed to go home. The probable diagnosis (90% surety) was then leukaemia but the dr's wanted to do a few more tests to be 100% sure, so we were asked to come back the next week. In the meantime Eli was still having tummy problems so on 1 February off we went to Dr Goss in Sale. There they found that that Eli has colitis (belly bugs are out of kilter), so Eli was given some medicine for that and is feeling a bit better.
Jodes and Pete have been talking about Eli and his illness at length. Its a huge thing to have a bone marrow transplant but it may be that its his only chance of survival. There's also the possibility that he'll need blood transfusions and maybe chemotherapy as well as the weekly blood tests to monitor his illness.
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