Jay - TourDeCure (Ambassador)

JAY'S mail please send to

P.O. Box 2075

Fountain Gate 3805

Melbourne-Victoria-Australia

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Australian Red Cross Blood Service

Australian Bone Marrow Donor Registry

G'day it's JAY

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My 12th Birthday is on 24th May

and they said I would never make it - look at me now
"YOU DON'T HAVE TO ACHIEVE EXTRAORDINARY THINGS"
"GETTING THROUGH THE DAY IS AN AMAZING FEAT IN IT'S SELF"

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Hi everyone, sorry it has been a few weeks, but a lot has been happening, been busy and also I have not been well the past few days. I have had some wonderful things happen over the past few weeks and I would like to explain to you all about the TOUR DE CURE which I am involved in & I hope everyone out there will get behind and support us on the journey to find a cure. The photo above (is that cool or what) that is my new School photo and the day I had that done I had a big scratch on my chin - oh well - it turned out OK. As I said I have not been very well this past week, had massive headaches and vomiting alot, high temps so I have been home from school. I did go to school one day but was so sick the school had to phone darsly mum to come and get me and then when she came to the school which was on Thursday I could not get up from the sick bay I was vomiting so much. I am still not well but I wanted to get my journal done, I know it has been a few weeks and everyone out there worries about me, but I will try to tell you as much as I can about the things I have been doing.

What is TourDeCure ? It is a wonderful group of people who have got together to raise money to help find a cure to cancer & I was invited to be a part of it. You can find all about the Tour De Cure on their website which is fantastic www.tourdecure.com.au . You will see the progress they are make, you can follow their journey, you can meet the team and you can help by backing a rider or just donating what you can to help find a cure.

"Geoff-JAY-Sam"

The Tour De Cure is a big project, it is a bunch of corporate people who have got together and have decided they want to do a bike ride, but not just a normal bike ride, this is a 4 year journey. I was invited to the Launch of Tour De Cure in Melbourne and it turned out to be the best day of my life. One of the charities they are raising money for is CAMP QUALITY and I was invited a long on behalf of Camp Quality and all the kids out there battling cancer to talk about my illness and to talk about what Camp Quality means to me (I got a bit stage fright) so my darsly mum started to talk then she started to cry - but she made a come back and told all the corporate people standing in front of us what my illness is, how hard it has been and why Camp Quality have made our lives a bit better. Well - everyone was crying after that speech - a good thing I suppose that means more will donate money to the coarse. The above photo is of GEOFF, he was the brains behind the event and wonderful Sam and of course me Jay. Tour De Cure has a wonderful website so please go visit - you can back a rider and pledge a donation or you can just donate to the coarse. There are 4 stages to the journey and the first stage of the ride starts in BRISBANE on 28Th May and I WILL BE THERE.

"Geoff-JAY-Sam - Darlsy mum"

After lots of photo's were taken at the Melbourne launch and meeting lots of the people who are taking part in the ride I was sitting down on the floor packing up my things ready to go home when Sam (the lady in the white shirt) came up to me and started to have a chat. I don't want to give away all the secret yet but "Sam" and all the others have organised for me and Darlsy mum to go to Queensland and to be in Brisbane to start them all off on the first leg of the ride from Brisbane to Sydney. WOW - I was in shock, it is not only going to be seeing them off in Brisbane we will be up there for a week from the 22Nd May to the 28Th May and I will be celebrating my 12Th Birthday up there in Queensland. I want to keep the rest a surprise after I get some cool photos of what I will be doing, but everything has been organised for us to go to Queensland and hang out with the Tour De Cure guys and have lots of fun. I have never been to Queensland before and I am so excited - this is something I was not expecting at all, and when Darlsy mum came over to talk to Sam and me, I told her we are going to Queensland and darsly said No we aren't we can't afford that - I said yes we are, Sam has invited us up to Queensland for a week and everything is taken care of - well darsly was in shock and could not believe it either.

"JAY on Tour De Cure Bike"

The guy in the bike shorts is RICKSTA the only Melbourne rider he is doing the ride and has been out practicing everyday. When the ride comes to Melbourne I am going to be joining in on part of the ride from Melbourne to Adelaide, so I will be doing lots of practice. The people who are giving up their time to raise money for such a great coarse, they are wonderful people and I am going to meet the rest of them when I get to Brisbane. I have had emails from some of them and they sign my guestbook and they are also looking forward to meeting me. There are 5 teams of riders each one has about 5 to their team, but they are all out there for the same reason and that is to raise money to find a cure.

"Quote from Ricksta about how Jay Motivates him to Ride"
Let's Ride!!
It has been easy to forget as too why I'm hoping on the bike 5 times a week, at all hours in the morning, clocking up 400 odd km's? I'm the only Melbourne based rider taking part in the Tour, and unfortunately I haven't had the chance to ride with the group. I have had to find my own motivation along the way and I won't lie, it has been tough. At last Friday's breakfast I was lucky enough to meet a fella whom for the last 8 years has been fighting for his life! Those last 4 words are huge - 'fighting for his life'. Not fighting to climb a hill, not fighting to keep with the bunch, not fighting to take the sprint - but fighting for his life!!12 year old Jay, who bravely stood in front of a bunch of corporates at the Melbourne breakfast with his mum, was able to have his story told - 'I have Neuroblastoma, it doesn't have me' is his phrase. Jay continues on with life, and harnesses every opportunity that comes his way. He competes in triathlons, which just shows the strength of this 12 year old. In this boy, I have found enough motivation to climb any damn hill, keep up with any damn bunch and challenge for any damn sprint that comes my way. Jay, and the thousands of children, men and women like him, are fighting for there lives. I, and 22 others, are some of the lucky one's who are able to give our time to helping raise awareness, and funds for cancer through the Tour de Cure. Let's Ride!!

"Ricksta"

*Team Lexus* - *Team Dencorus* - *Team Vittoria* - *Team Boost Mobile* - *Team Ella Bache* & of course the *Support Team*
Some of the guys and girls doing the ride are: Ricksta - Aunty Sam - Max - (Coombsy which is Geoff) Josh & many other riders

Please everyone - get behind the wonderful people at TOUR DE CURE & me and lets raise enough money so we can find a cure so no more kids like me have to suffer, this is not a small project, there has been alot of work gone into organising this event and now it is up to all you out there to support us and donate as much as you can Every dollar counts.

I'm doing my part in every way I can to raise awareness of my Cancer Neuroblastoma and to also raise as much money as I can to find a cure - but as I have said before, I can't do it on my own and it takes to the wonderful hearts of the big corporate people (the ones who have the money) to help out. Most of these people who were at the launch did not know what it was like to live with cancer, the riders who have given up their time, they don't know what it is like to live with cancer but they wanted to help because there are too many dying from this horrible illness, not only Neuroblastoma but other cancers as well. I am so happy to be a part of the Tour De Cure, I have already inspired a lot of the riders and I hope to inspire them even more when I get to Brisbane. I told them that I NEVER GIVE UP and when their legs are aching and hurting they are to think of me and look at my wristband which says 'NEVER GIVE UP', If I can get through the pain of battling cancer, then they can get through the pain of a bit of hurt in their legs and they must remember what they are doing it for. So Please everyone, I am very excited and can't wait to get to Brisbane - please get onto the website and donate or support a rider so we can find a cure.

"JAY & David"

Shaking hands with "DAVID" - he is the Managing Director of "Choice Hotels" and he a long with Christina and Nick have paid for all my Accomodation when I come to Queensland and also "Choice Hotels" are putting up the Accomodation for the next 4 years for all the TourDeCure Riders & everyone involved (How cool is that) Go David - your a real cool guy

"JAY at Alfred Hospital"

We had to go to the Alfred Hospital on Thursday - it was time for Darsly mum to have another CT SCAN on her back - her back is not very good, she is in a lot of pain and has waited another 3 months to have this scan. Whilst there darsly took some photos of me, this one is out the front, that is the critical care unit and it has the hyperbaric chambers in that building and I got the opportunity to go into that part of the building to have a look because all my mates are the Emergency doctors who are on Medical Emergency which is filmed from the Alfred Hospital.

The TRAUMA helicopter

I got to see the Trauma Helicopter, it was on the helipad when we got to the hospital, it was so cool. We waited for it to take off so we went across the road to the park to watch it go.

Trauma Helicopter

This is where the Trauma Helicopter lands, it is a bridge across the road, it is a bit helipad across the road (it was so cool) it was the first time I had been to the Alfred and the Helicopter was there. It was my lucky day today - I got to meet DR. Fred Morri he is the main Emergency doctor on Medical Emergency, and he talked to me and showed me around the emergency department. Then Phil the director was talking with me and then there was a code blue alert and Phil took me out the front where the code blue was (a code Blue is a medical emergency) and this lady had a fall. Then Sarah one of the training doctors took me into Fast Track to watch a lady get plaster put on her arm, she broke three bones in her wrist, she got hit by a car. I get to do all this because I want to be a Medical Emergency Doctor and also a Trauma Helicopter pilot so all the doctors at the hospital give me lots of info on how to become one.

Trauma Helicopter (Alfred Hospital)

About Darlsy mum, she had her scan and it was not the best news but she has to go back to the Alfred in two weeks time because her surgeon was not there (he was suppose to be there) but a registrar was there who could not give any authority. One of the screws in darsly mums back is misplaced and is probably causing all the pain in her back and also the bone graft has not healed properly and she might have to have another surgery to realign the screws in her back and she is not very happy about that. Darlsy mums Spinal Surgery was a huge operation, it has been very difficult not being able to work and to also take care of me when I am sick, but she is the best darslys mum and she just gets on with things even though it is very painful for her to do. She never complains but I know she is in lots of pain, so I do my best to take care of darsly mum as well - we take care of each other. It is on the 17Th May she has to go back to see the surgeon to see what he says about the screws in here back. With it being such a huge operation you would think they would get it right the first time, it is not fair that Darlsy might have to go through another operation - it is tough enough for us right now, this is going to be real tough if she has to have another spinal operation.

My Health: I have been really sick over the past week, darsly has just been monitoring me at home because she does a great job and knows what to do for me. My headaches are severe, they hurt so much and they have been constant all day each day. I have been vomiting lots and just trying to sleep. I slept most the day yesterday because I was really sick. I got up this morning not feeling the best but I had to do my journal and as soon as I get it done I will be back into bed.Oncology: I have alot of Scans and tests coming up - they are just being organised, I will have MIBG scan like I did last year, MRI scan, Bone Scan, blood tests, Urine Test and a few more which are involved in having Neuroblastoma, but not sure of the date yet, so I will let you all know as soon as I do.

Neuroblastoma it will never get me, I have fought too hard to stay alive - it thinks it is tough but I am tougher and it will never take me down. I am lucky to have been given a second chance, a chance that doesn't come a long that often, but it was through strength-courage-determination- hope and inspiration that I am here today - and of course my darsly mum who has been there every step of the way. My Neuroblastoma invaded my entire body, it thought that it got me, but it didn't, this monster of a cancer was not as tough as it thought it was and I fought on to kick its butt. I still have a spot which sits on my spinal cord, but it doesn't stop me and it wont stop me fighting not only for myself but for others out there who are battling the same illness. When Neuroblastoma decided to change my life, I decided from that day that the word Cancer is just that 'Just a word' it doesn't scare me, it is a word that spells CAN, so with every bit of strength I had although Neurobalstoma was invading my body and trying to take me out, I fought with everything I had. I lost the use of my left arm and my left leg, it was really trying to get me good and to be told that I would never walk again or never get the use of my arm back again made me even more determined to fight this monster and show it who is the boss. I not only walk, I run, I do tryathlons, I jump, I ride bikes, I roller blade, I got the use of my arm and my leg back through cheer guts and determination to NEVER GIVE UP. So I suppose I am saying to all those out there who are fighting Neuroblastoma, just remember that you can WIN the fight, you can beat this monster, you are tougher than Neurobalstoma and with a positive attitude always and lots of strength and determination you can fight this monster and WIN. Remember that GIVING UP IS NOT AN OPTION and you must fight on even though it gets very tough at times the thought of giving up should never enter your mind.

To those who have never had cancer in their lives -Never had any form of illness or disability in their lives (this is to those who have their Health) - If you have something to winge about today, take another look at yourself and think twice about whether is is worth winging about. I have found that people who have never experienced cancer or any form of illness or disability in their lives winge about the most petty things - if only they new what it was like to fight for your life, what it was like to sit in a hospital for months having doctors poking, prodding, sticking needles into you, pumping you with Chemotherapy, and many toxic drugs, to have spinal taps, infusions, scans, to be cut open and have scars the rest of your life, blood transfussions - bone marrow transplants and much much more - these people who winge about the most petty things in life have no idea and I would like to invite anyone who has a winge today about the most petty things to go down to there biggest hospital and visit the CANCER ward and then see what you have to winge about - I am sure it would open your eyes. Us cancer kids do it tough but when you walk through that Cancer ward, you never see us complain or winge, you will see us with SMILES ON OUR DILES (Faces), laughing and having fun even though we have to go through so much crap, we still live life to the full and laugh each and everyday. The reason I put this part in today was because in the past few weeks I have sat and listened to so many people winging about the most petty things - gee I would like to see what they would do if they really had something to winge about - so go take a visit to the CANCER ward and see what you have to winge about. I still have spots which sit on my Spinal cord at T11 -T12, it is like a ticking time bomb, but I don't winge about it, I get on with my life and live each day to the full and I treasure every single moment I have on this earth. I have many, many friends with lots of different illnessess, some have no arms, some have no legs, some are in wheelchairs, and some have cancer like me (Not one of them complain about their disability, they all get on with life and make the most of it and they all do it with a smile on their face. I wrote this the the people out there who have never experienced any form of illness or disability in their lives, those who are fortunate enough to have great health but those who still find something to winge about - it is to those people I challenge to take a walk through the hospital, go volunteer to help a disabled person, go visit the burns unit & the cancer wards and then you will find that your life is not that hard at all. My friend Sophie Delizio is a great example of great courage and for what she has been through (two bad car accidents) burns to her entire body, losing arms and legs but still smiles, and laughs and makes everyone around her laugh (Now that's what I'm talking about) - Think before you have a winge today - is it worth it.

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"JAY"

www.jaysjourney.org

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My morning with Channel 9 (Today Show)

JAY'S MAIL BAG

P.O. Box 2075

Fountain Gate 3805

Melbourne-Victoria-Australia

""My 12th Birthday is 24th May 2007""

The Survivor Movie(Who I am a True Survivor)

G'DAY it's JAY

G'DAY everyone - It is now School holidays here in Melbourne (yep) they came around really quickly and Easter is not far away. I have 2 weeks off school and go back on 16th April. Just before I broke up from school I received 3 Merit Awards - and that was 3 Merit Awards in one day which is really hard to get. I also got a great certificate because I achieved standing up on a Surf Board when I went on my school camp to Lorne with School a couple of weeks ago (how cool). The camp was great and down at one of our famous surf beaches Lorne in Victoria, we went for a week and we surfed everyday (I think I am a natural born surfer) I really enjoyed it.

Channel 9 Today Show

Steve Jacobs - Jay - Cameron Williams

WOW - I was on the TODAY SHOW on Friday 30th April. Steve Jacobs is the weather reporter on the show and is so very funny and a wonderful guy to hang out with (a laugh a minute) and Cameron Williams is the Sports reporter. They were at Federation Square filming all week because the FINA WORLD SWIMMING CHAMPIONSHIPS were in Melbourne and I got to be on the show from 7am to 9am - and so did darsly mum.

The TODAY SHOW (Channel 9)

Darlsy mum - Steve Jacobs - Jay - Cameron Williams

We caught the train into the city very early in the morning - it was a beautiful morning a little cold but we soon warmed up. When we got to Federation Square we chatted to Steve & Cameron and then they had to do a live cross so we sat and watched.

Darlsy mum - Steve Jacobs - Jay

The gave us some cool caps with the TODAY SHOW on it and Steve & Cameron signed my cap for me. During a break from filming Steve sat down with me and chatted for ages, and he showed me how the weather is done and how he gets all the weather information and then the next live cross we were on - we were on every live cross after up until 9am, it was so much fun to do.

TODAY SHOWS - Steve Jacobs & Sound recordist

Steve also showed me all the equipment - the camera man and the sound recordist guys were really cool. We had so much fun with the TODAY show and Steve invited me back in a few weeks time as they will be in Melbourne again. Steve lives in Melbourne but he has such a cool job he travels all around the country and the world (what a great job).

JAY at FINA WORLD SWIMMING CHAMPIONSHIPS MELBOURNE

After we had finished the live crosses with the TODAY SHOW Darlsy and I then went to the FINA WORLD SWIMMING CHAMPIONSHIPS at the Rod Laver Arena in Melbourne. We were lucky enough to be given free tickets to the event (other wise we would not have been able to go). It was strange seeing the Melbourne Tennis Centre turned into a world championship pool - it is one of those pools which can be taken anywhere.

JAY at Fina World Swimming Championships

We got to watch some of the top swimmers in the world. I have never been to the swimming before and I really enjoyed it.

JAY & Fina Mascot Penny

While at the Swimming I got a cap to add to my collection of caps - it has the 2007 Melbourne Fina World Championships on it and also the Mascot for the Champs is the little Penguin Penny.

JAY - and drum Teacher ANDY

I got to see ANDY my drum teacher the other day. Lately I have not been able to have lessons because we can't afford it - but Andy did a lesson for me which was cool. Here I am on the Electronic Drum Kit I learn on with Andy. The Electronic kits is cool because it is not as loud as a real drum kit.

JAY - a little sick

My Health: I was not feeling very well, I had really bad headaches and nose bleeds and to top it off I got bitten by a spider. I am not sure what type of spider it was but darsly mu had to rush me to the doctors because my leg swelled up really quickly and it was hurting bad and I was sweating and shaking. I was riding my bike and I felt a pain in my leg, I flicked off my leg what ever it was, I was so scared and I rode my bike home really quickly. I got home and I was shaking and scared, darsly came running outside because I was screaming something bit me. Darlsy asked if I saw what it was, I said I don't know it had big legs. Darlsy took me down to the doctors straight away and they said it was some sort of spider and I was given medication. When I got home I had to lay down I did not feel very well, I also had bad headache. I'm ok, it wont bring me down. The bite on my leg is still there but I am ok. I sometimes think to myself - what's next? what is the next challenge I will be given and will it always be like this all my life having to fight everything thrown against me - and then I think well, things could be worse, I am not the only one having to fight, there are thousands of you out there and I am just one of those thousands. Neuroblastoma: - It ain't every gonna get me, it is never going to bring me down, I am tougher than it is and i want to pass on my toughness, my strength to all the little ones out there who are battling the same illness - of course it is tough but you always must have a positive mind and have that strength to get through it all. DREAM - BELIEVE - ACHIEVE you will win the fight against this horrible illeness. Although I have a spot which sits on my spinal cord at T11- T12, I believe it will never get me and it will never bring me down (I wont let it) and I just get on with the life I have and try not to think about what might be. I live for the future and although I cant' totally forget my past - I try not to think about what was. My journey I hope will help others, I hope will inspire others to never give up hope, to never give up the will to fight. The word Cancer doesn't scare me - it is just a word - a word that actually spells CAN, so all my little buddies out there, don't ever think you can't achieve something, don't ever think you can't win against Cancer because you CAN. I have to go to my Oncology doctor soon for lots of tests - I will let you all know when that will be. And don't forget Darsly mum, she is still in a lot of pain from here Spinal surgery & she goes to have another CT Scan on 26th April, hopefully the scan will be a better result than the last one. Still my darsly is in lots of pain, she never complains and does so much for me even though it is hard for her.

"LIFE IS MY REWARD"

The medals on my chest are broviacs for meds

Helmets wont' stay on cause no hair is on my head

My weapons of destruction I take very day

I fight the battle within me while I struggle to play

I fight with honor and courage

No marine could do as well

I am a child living in this hell

So bring on the medals the purple hearts of wars

The gold cross the silver star to place upon my scars

For I am a child with Cancer

No one has fought so hard

But every day I struggle on

My LIFE is my REWARD

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Please click onto Jay's Inspirational Journey the people at Georgies Fund (finding a cure for Neuroblastoma) did an article on me and added it to their website - so please go and have a look - but before you go don't forget to SIGN my guest book.

"JAY"

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