G'day from Jay

(pictures: Me relaxing and Snowflake relaxing)

G'DAY all my wonderful friends, this is Jay.
As you read in the last journal yesterday you know that my darlsy mum had her Surgery cancelled. She was suppose to have it today, but the hospital rang yesterday late and cancelled it so I am not very happy with the hospital.

Dalsy said that if she did not laugh about it she would cry or go crazy, so we just have to wait again.

Some better new this morning when the hospital rang again and said that my darlsy surgery is now scheduled for the 15th JUNE, so we have to wait for a few more weeks again and try to organize things again.

I have to go and unpack all my things now that darlsy packed for me and darlsy has to unpack all her things.

I am still waiting for the date for my MIBG SCAN still, so darlsy said that now she is home for another four weeks she will call the Oncology doctor to find out why it is taking so long. As you know I am doing ok, but I need to have the MIBG SCAN to determine the dormant spots on my spine at T-11 and T12, they may be dormant and they could stay dormant for the rest of my life but then again they may not. With Neuroblastoma you just don't know (I describe Neuroblastoma as like having a little PAC MAN nibbling around inside).

I hope you all visited the Neuroblastoma page because I have some of my little Angel friends on there now at the bottom of the page. They are not all there yet but they will be and of course I will be putting up all my NB friends.

CAMP QUALITY is on my schedule this week - yes I have something special I am doing this Thursday with Camp Quality (a day off school) so I will let you know what I was up to with my friends at ( CAMP QUALITY (laughter is the best medicine) when I come to do my journal later that night - I know you all want to know but you will have to wait see.

I hope you all visit the link to CAMP QUALITY (laughter is the best medicine) because they have been a big part of my life in Australia and are part of my family.

I want you to remember my friends especially the ones who have passed away, just because they have became Angels doesn't mean they should be forgotten so if you could visit:

CALEB
sweet NAVADA (NB)
EMILY (NB)
KADIN
TYLER (Leukemia)

I would really appreciate it as it has not been long since they call became ANGELS.

I will put some more of my special friends up in the next few days.

Please remember how lucky you are to be here - don't winge because you have nothing to winge about - don't winge about the most petty things in life because it is not worth the effort - put your efforts into caring about someone who is doing it tough, the sick kids and adults, tell someone you care, tell someone you love them because they could be gone tomorrow. Remember the words of Lance Armstrong: PAIN IS TEMPORARY - QUITTING IS FOREVER, don't ever give up on anything and don't ever say you can't do something because you CAN.

I will be putting up my past journals very soon, I just have not had a chance to do it, but all the journals from my other sites will be on here soon.

MUST GO - BIG BIG BIG KOALA HUGS TO EVERYONE (JAY)

Muddy day (play)

This is Jay's Darlsy mum - as you can see by the photo Jay decided seeing it was muddy and wet he would go and play in the mud (boys will be boys) he thought is was a great joke , he was mud and slush from head to foot.

The other photo is Jay all cleaned up and looking handsome with his dog Snowflake and of course his mate Porka.

Today will be the last post until atleast around the 3rd June as I go into Hospital (The Alfred Hospital - the biggest trauma centre in Melbourne)(Australia) tomorrow morning Monday 29th May to have a major back operation (SPINAL FUSION) which I am not looking forward to one little bit - but if Jay can beat Cancer then this is a piece of cake.

I will be in hospital from Monday 29th May to atleast Friday 2nd June, Jay I am very worried about because I have always taken care of him, no one has ever taken care of him but me so I am a little hesitant in leaving him with someone for a week. Jay doesn't want me to go, but I have to have the surgery because my back is getting worse each day and I am at a stage where I can't walk some days.

I know Jay is a tough boy - boy do I know that and he will make sure he looks after me although it is going to be hard for him and not really fair on an 11 year old to take care of his mother.

Although my recovery is going to be atleast 4 months, I am going to try and get back quicker (yes Jay got that determination and strength from me) no back surgery is going to keep me down (I am to active to be confined to doing nothing).

I want everyone to know that Jay loves having his website back, and as soon as we sort of get back to normal, Jay will be doing his journal. He said to say thank you to everyone who sent him birthday greetings, he had a great birthday.

Please know that if you sign the guestbook you will not see the entry until I come home from hospital.

We wish all our friends especially all the little sick friends lots of strength - courage - determination - hope and inspiration all the trates Jay has for you to all get better and live a wonderful fulfilling life.

REMEMBER:

DON'T TAKE YOU LOVED ONE'S FOR GRANTED
ONCE YOU LOSE THEM
THEY HAVE GONE FOREVER
GIVE THEM ALL A BIG HUG EACH DAY
AND TELL THEM YOU LOVE THEM EACH DAY
TREASURE EVERY MOMENT YOU HAVE
AND LIVE EACH DAY TO THE FULL

"JAY"

5PM SUNDAY NIGHT UPDATE:

MY BACK SURGERY HAS JUST BEEN CANCELLED:

MY Surgery just got cancelled, I just received a phone call telling me I am sorry but we have had to cancel your scheduled surgery due to LACK OF BEDS. Am I fuming , you bet I am, I have been waiting for this surgery for 2 and a half years. I organized for Jay to be taken care of for a week (someone went out of their way to take a week off work to look after him) and now everything has been mucked up. I have not been given a new day or date for my surgery, the only things I got was sorry there are not enough beds. I will have to let you all know what is going on, but can't do that until I know something but really don't know what I will do now because my friend cannot take another week off work. SO Jay and I will be here - we are not going anywhere - I have been put on hold, my bags are all packed and don't know when my surgery is - also Jays bags are all packed and he was finally prepared for me to have my surgery, now that has mucked with his little head now. Well what can I do, I rang the department of health as they were the ones who have been trying to get my surgery done and were angry that I had to wait so long, and when I told her what had just happened she said she will be ringing the hospital first thing in the morning to and give them a piece of her mind and demand an explanation. Department of health and the health minister here in Melbourne are not impressed this has happened and are demanding answers (so am I). So looks like you have to put up with us for the week - we are not going anywhere (lol). If I don't laugh I will cry. Hope to talk to you all during the week and I will let you know what is happening. Also we are waiting Jays MIBG scan still, so hopefully we can also get some answers to when that may be.

TAKE CARE bye for now

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Birthday Kiss for Jay

G'DAY IT'S JAY:
I had a great birthday thank you everyone.

This picture is of me and my Darlsy mum giving me a big kiss for my birthday and there is Snowflake and of course Porka. I have some more pics but they wont upload - maybe I can put them up on the weekend.

I had to stay home from school on Thurdays. On Wednesday night I was not feeling well and had bad headache and still had it when I woke up so Darsly said I could stay home for the day.
Snowflake loves her new home and so do I, I am so glad all the unpacking is done, there was lots of that.

Darlsy got a phone call from Camp Quality today inviting me next week to this fundraiser. There is this man running around Australia he is in his 60's and I have to greet him when he gets of the big boat from Tasmania and there are lots of other things planned, I will let you know when I know some more.

My darlsy has to go into hospital on Monday 29th to have a big back operation (spinal fusion), I have never been away from darsly (well only on camp quality), she will be in hospital for a week and I will miss her. I am going to stay with her on Monday, I am not going to school, I want to be with darlsy.

Darlsy said she will write something on here on Sunday to let you know we wont be around for a week.

It has been great going to visit all my friends again, I have not got to everyone yet, but I will. So many of my friends are doing great but there are a few having a tough time and I send them lots of my strength and courage for them to keep fighting and to never give up.

In life you must treasure everyday, don't take it for granted, you never know what is around the corner, what is going to happen. Tell your loved one's you love them every single day.

When I get some time I will put all my friends to visit up on the journal or on the rest of my site. Sorry it is not finished yet, but it will be soon.

It is my little friend Kaitlyns birthday tomorrow - so Happy birthday Kaitlyn I will come visit you tonight.

I am still waiting to have my MIBG Scan, not sure of the date yet, I will have to wait a bit more now because darlsy will be in hospital, but that's ok, it is my turn to take care of her, she has taken care of me all my life, it is my turn to take care of her now (I am a bit scared - I don't wont her to have surgery) but I know she has to have it.

I must go now, we will be back on Sunday (Australian time) to tell you about my weekend. Darlsy is taking me somewhere on the weekend for my birthday (not sure where) but will let you know on Sunday.

You all take care and remember my friends that you can do anything in life (it may be tough going) but you always CAN, stay positive always and believe in your dreams and treasure every day you have and give someone a HUG a day.

Keep those BIG SMILES ON THE DILES (FACES) ALWAYS.

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JAY'S 11th Birthday - 24th May 2006

"JAY'S (mailbag)

P.O.Box 2075 Fountain Gate 3805

Melbourne - Victoria - Australia

G'day it's JAY

WEDNESDAY 24TH MAY 2006 HAPPY 11TH BIRTHDAY MY VERY SPECIAL BOY JAY

Jay was born on this day - on a WEDNESDAY at 4:25am and what a special day that was. From the day JAY was born I knew he was very special but I did not know how special he would become and how hard he would have to fight to live.

Jay is special in so many ways, he deserves every great thing that comes to him in life because he has achieved so much in his life that doctors said he would not have - yep - they said he would never make it. This is one very determined young man - for him to reach the age of 11 is a milestone and a wonderful achievement for one so young.

I celebrate every birthday with so much joy but his 11th birthday is even more special because he has defied all the odds stacked against him and made it with guts - strength - courage - determination and so much inspiration and Jay and I will celebrate this big achievement.

Before going to bed Jay told me I had to wake him at 4:25am in the morning because that is what time he was born (well I think I will be sleeping) I do remember the time 11 years ago (OUCH) but worth it. I will let you all know how his day went and all about the gifts he got.

One thing I must tell you is that Jay has been chosen to get a Scholarship - he has to sit a test on the weekend for the HIGH ACHIEVERS which will help with his schooling which will be fantastic. The Principal and teachers at his school said that Jay is a fantastic Drawer - Creative Writer and Story teller and is one year above his level along with all his other work which put him in the High Achievers for next year first year in Secondary school and a Scholarship - how great is that. I am so very proud of Jay and what he has had to go through in life, he has had to fight for his life, miss out on a lot in life but still can be 1 year ahead in his schooling (I knew he was smart - but this is great) and I am so very proud of him. Better go - I will be back later and hopefully Jay can get on here and tell you all about his day.

To all our great friends and sick little friends - BELIEVE AND YOU WILL ACHIEVE - so you all keep fighting on and never give up and stay happy always.

UPDATE 24TH MAY 2006
G'day all my friends - wow I woke up this morning (darlsy did not wake me at 4:25am the time I was born) she was aslee and so was I , so I got up at 7am.

It was a beautiful sunny day today - we have not had a sunny day for a few weeks but my birthday all day was a beautiful sunny day.

Dalsy let me have a couple of presents when I woke up this morning and snowflake gave a present as well. You know I love LEGO well I got lot of lego, and the Airport city I wanted which goes with my lego plane - so cool. I got an MP3 player (Popstick) for my music as well and snowflake gave me a little cup with happy birthday on it with a little dog in it.

I had to go to school, I really wanted to stay home but darlsy said I had to go to school and I would be aloud to open my other gifts when I got home.

All my friends at school sung happy birthday to me and my darsly gave everyone lolly bags and then it was time to come home and see what my other gifts are.

I can tell you I got some really fantastic things from some great wonderful friends overseas and it was mostly all NASCAR STUFF.
I have to say thankyou to some very special friends because I could not believe what they sent me for my birthday - I did not expect it at all and when I opened the gifts I got from my friends overseas I could not believe my eyes.

Thankyou James, WOW thank you so very very much
Thankyou Mona and family, the same thank you so much.

Nascar is something I love so very much, something we don't get here in Australia and the gifts from you James are the greatest (NASCAR) Dale Earnhart Jnr and from Mona and family also NASCAR stuff , Jeff Gordon - Thank you thank you thank you so much I love the gifts so much - I can't stop looking at them.

This has been the best birthday I have ever had and I appreciate all my friends who sent me E-CARDS and birthday greetings -

I will write again tomorrow but for now I am going to play with some of my things, I am doing ok - I had a headache at school today but I stayed at school.

Thank you everyone for caring about me, I am glad I can come back to my journal again and do some writing, something I am good at and enjoy very much, and also here to cheer up all my sick little friends, and big friends. Remember to always be happy no matter what, no matter how tough things get and stay positive and strong always, believe in yourself and never give up.

I AM 11 YEARS OLD NOW and I know I will have another 11 years and other 11 after that - what a great birthday, thankyou all my friends for making it a great day for me.

JAY is back - 22nd May 2006

Monday 22nd May 2006:
JAY AND BRON ARE BACK BIGGER AND BETTER THAN EVER.
G'day it's JAY

This is Jay's darlsy mum trying to catch up on a month which is missing.

As most of you know - Jay had another web site which was cruely sabotaged, and also we recieved very cruel, nasty, threatening, harrassing emails for the past 7 months which we could not take anymore and that is why we had to do something and close the other site and try to get another one up and running.

Jay was very destressed over the cruel and nasty things which were being said about him and also about myself and we hope the person who has been doing it are able to live with themselves and know that you did not win - because we are back bigger and better than ever and will continue Jay's cause and that is to get the awareness out there about NEUROBLASTOMA and raise money for trying to find a cure.

Jay's other site had over 98,000 Visitors and over 5 thousands guest book entries from wonderful kind people - all these entries have been kept and when time permits all the Journal entries from the las web site will be put into the ARCHIVE section of this site.
I hope you all enjoy Jay's new site - I am sorry it is not fully completed yet but it wont be long until it is.

You can sign the guestbook but please know that your entry will not appear immediately because I have a security check on all the entries which I go through and decide whether of not the entry is apporiate to allow into Jays guestbook, once the check has been made then you will be able to see you entry as long it is not of a mean, and threatening nature.
We have been off line and away from the computer because of the very nasty things which were happening which affected Jay and myself very much. I would like you all to think before you write comments in the guestbook and remember it is for an 11 year old boy.
Jays new site will be what it has always meant to be and that is full of strength-courage-determination-hope and inspiration to others. Our goals are the same and that is to get the awareness out there about NEUROBLASTOMA and about the horrible cancer it is and also to fight for other children affected by Neuroblastoma.

Jays site is not one for negativity or nasty comments, Jays site will always be uplifting and full of inspirational words from Jay and myself to others who have to go through living with a child with cancer and also to let others know that it is not an easy path to travel - cancer changes your life forever and my life with Jay has certainly changed and will never be the same again.
Jay is one of the lucky one's - I feel very lucky as his mother to have such a wonderful inspirational determined young man who had to fight very hard for his life - but he is a survivor and he will continue to be and with us getting the awareness out there about NEUROBLASTOMA we are hoping all the other little ones will also be survivors.

I have a list of the people who know of this new site - I have only given it to our true friends - people we know who we can trust.
WE HAVE MISSED YOU ALL
It is only 2 days until my very special boy turns a big 11 years old - yes on the 24th May he is 11 - and they said he would never make it - well he did and proved all those doctors wrong.
If you could leave some very kind words for Jay on his birthday in his guestbook it would be very much appreciated as he has had a bad last month with everything which has been going on and some uplifting messages would be fantastic. We have had to move house which we are in and settled into our new home now.
On the 24th April Jay went back to the Royal children's Hospital to get his MRI SCAN result to the brain - the scan came back clear which was a wonderful result - but still have no answers as to the cause of the headaches which he continues to get.
Jay has had many day's off school due to him being sick and very bad headaches. On 3rd May I was called by the school, Jay was very sick and bad headaches so I had to go get him. Thursday 4th he seemed a bit better so I sent him off to school only to get another phone call that he was not well, so had to go get him. Friday 5th May still not well, the headaches the main problem today. In the afternoon he seemed to get better and was playing. Saturday 6th May not a good day at all - a very sick little boy - vomiting - he had 5 headaches during the day - he was very yellow looking a look I did not like because that is what he looked like when he was first diagnosed and he had very high temperatures. I took him down to the local GP, he said maybe just a 24hour bug, I was not convinced of that. I took Jay back home and gave him some medicine and into bed. He continued to vomit and was looking even more yellow. He slept all day and all night - waking only to have a vomit or a headache would wake him. Sunday 7th May, not much better, he wanted get up and play but his little body would not allow him, he really looked sickly and his headaches continued throughout the day. A bit later in the afternoon he was feeling a little better. I rang the doctors to make an appointment for him on Monday to have some blood tests done.

Monday 8th May - 10-45 took Jay down to the doctors to get some blood test done he had: *FBE

*E/LFTS - URINE & CREATININE
*ESR - URINE M/C/S C-REATIVE
*PROTEIN - IRON STUDIES
*WEIGHT: 40kg
*HEIGHT: 154CM
He stayed home for the rest of the day.

Tuesday 9th May he was feeling better and went off to school and lasted the day and the same with Wednesday 10th - only took him out of school for an our to go and get the blood test results. Doctor say's all the blood tests were fine (hard to believe) when he was so yellow, but anyway he said they were all fine.

Today as I said is Monday the 22nd May, only 2 days before Jays 11th birthday and he is very much looking forward to it. Jay went off to school this morning (in the horrible Aussie rain) yes it is getting cold and rainy here down under (we are not cold weather people).
I am still waiting on the date for Jay's MIBG SCAN, the scan of all his body to make sure there is not Neuroblastoma anywhere.

My news is that I have to go into Hospital on 29th May to have my back operation (I have spondylosis - scoliosis and degenerative bone disease) and have been waiting on a back operation for 2 years - I live each day in 24 hour a day pain and received a phone call 3 days ago letting me know my back operation will be on 29th May only one week away. Jay will be taken care of by a carer for 5-6 days whilst I am in hospital, but after that I am not sure what I will do as I will be out of action for 4 months, I am having a spinal fusion.
Jay is looking forward to some fun activities with CAMP QUALITY coming up very soon and I am sure he will let you all know about that.
Well that's it for now - it is great to be back and we have missed all of our friends very much.
Please know that Jay wants you all to still keep those SMILES ON THE DILES stay positive and strong and never give up.

"JAY & DARLSY MUM"