Shannon makes the beat go on for Jay

JAY'S (Mail send to)

P.O. Box 2075

Fountain Gate 3805

Melbourne-Victoria-Australia

CANTEEN

"G'Day It's JAY"

My 12th Birthday is on 24th May 2007

CLICK ON THE ARTICLE & YOU CAN READ IT

THE SURVIVOR MOVIE (Who I am - A true Survivor)

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G'day everyone, yep I'm back, silly computer was playing up so sorry about the long wait. I am here now. The top article appeared in the Berwick News (our local paper) on 15th March, which is a follow up the to article below. Sorry if you are unable to read the print but I can't get it any bigger. Click on the ARTICLE and you will be able to read it - maybe that will help in seeing it better. The article is about Shannon Noll again, the second article they have done on me and Shannon. Shannon is such a big support to me as you all know if you read back on previous journal entries you will find out just how special Shannon is to me and how he inspires me to keep going and the biggest way I do that for Shannon is to keep beating on my drums - the drums that Shannon gave to me. All the kids at school still do not believe me that Shannon is my mate, even when the article was in the paper one of them didn't believe that I have a drum kit and that Shannon gave them to me but it will be proved real soon that Shannon is my best mate as he will come visit my school (that should show all the bullies) . Drum lessons: they are on hold as we can't afford the drum lessons, it was hard for darlsy to tell me I can't have drum lessons anymore, but I do understand, we have been doing it tough so the drums lessons will just have to wait. I will still continue to play my drums at home and try to teach myself more things on the drums so Shannon will be proud.

What have I been up to? Well not that much really but I did get to go to the Australian Formula One Grand Prix which was held in Melbourne last weekend. If you look at the top of my journal you will see a banner CANTEEN they are another cancer support group I am with and they invited me to go to the Grand Prix. Darsly drove me into the Canteen office which is across the road from the Royal Childrens hospital where I go to have lots of things done to me. There were only a hand full of kids invited and I was one of the lucky ones. I did not have a formula one shirt so I wore my V8 Supercar shirt, the Craig Lowndes one. We arrived at the Canteen office at 7am in the morning and we were given a VIP medallion to the Formula One which included a Pit walk to see all the formula one cars and the drivers (How cool is that) I have never been up close to a Formula one car before. My favorite Formula one driver is Fernando Alonso .

The Grand Prix - It was great - Thank you CANTEEN for taking me, along with another organisiations you really know how to brighten the life of a child with cancer and you sure did that for me. My favourite Drive Fernando Alonso he came second on race day.

"YOU DON'T HAVE TO ACHIEVE EXTRAORDINARY THINGS""GETTING THROUGH THE DAY IS AN AMAZING FEAT IN IT'S SELF"

My Health - My life - I have been doing ok, although the headaches and the nose bleeds and the bad aching legs still continue to bother me. I have had a few days in the past few weeks since seeing you all last that my headaches have continued, they slowed me down a little, but they did not take me down. I have to lay down when I get my headaches, sometimes it takes longer than other days for the headaches to go away. Sometimes the headaches last for days, and sometimes a headache will just last for a few hours. I am getting on with life as I do believe in living life to the full and having fun. I was thinking the other day about all I have been through in my life, I have been through more than the average kid down the road who has not had to battle a terminal illness, but I am an average kid, I am just the same as all my mates, I just have had a bit of a tougher life than them and have had to really fight for my life. I sometimes think about how much I have been in hospital, how many tests I have had, tests which I have lost count, I have had so many I just can't keep up with it. I sometimes think about the things I did miss out on, but think to myself, hey I might have missed out on a bit, but I am making up for it all and will continue to make up for it. I think about how lucky I am, I do consider myself very lucky person and I hope I can pass that luck on to all my other little sick friends. I sometimes see all my scars on my body and wonder what it would be like without them and wonder what my life would have been like without cancer. But - all I have ever know is a life with Cancer and in a way it has been a life changing experience and made me a very strong, determine, inspirational person (I have to wonder if I would have been that person if I had not had cancer)?

My Darsly mum - I wanted to write something about my great MUM - she is my darsly mum and I would not be here today if it were not for her. I call here Darsly, because she is just that, darsly meaning (darling mum). I know it was not my fault that I got cancer, but sometimes I say to my darsly mum (sorry) for making life so difficult and darsly say's back to me, don't be silly, you have not made my life difficult you have just made it more of a challenge and we always get through those challenges and we always will. I am sure it is the same for other cancer parents, they are just put into the background and never recognised for the love - support - time - devotion - strength they put into kids like me. I believe that all parents of cancer kids should be given a special award, well I believe my darsly mum should, she has given up so much, she has given up so much just to keep me alive and got no recognition for it. I can say thank you but that is not enough, I have been given a second chance at life all because of my darlsy mum and she has done it all on her own which makes her even more special. Even through keeping me alive she was also trying to keep her father and mother alive (but they passed away) and then just last year darsly had to have major Spinal Surgery, but she kept on going, I have never known such a positive, strong person before. Even though times are tough for us, my darsly mum always has a smile and always pushes ahead no matter what. My darsly mum is my inspiration in life, she is my strength, my courage, my determinaton to keep fighting my illness and also to fight to help get the awarness out there about Neuroblastoma and to help other families and let them know you can beat this illness. I love you darsly mum.

"YOU KNOW"

You know your the parent of a kid with cancer when....

Kids with hair look strange to you

You can sleep anywhere & anything that reclines more than 15 degrees looks comfy.

You don't realize the sharps container is on the kitchen table until half way through dinner.

You enjoy the trip to the hospital at 3am because there aren't any cars on the freeway .

You hear a truck backing up & think it's the IV alarm beeping.

Med students ask to borrow your notes.

You wrap presents & packages with surgical tape.

Waiting for an hour doesn't seem a long time anymore compared to the wait at the first doctors appointment.

You have syringes in our cutlery rack in the dishwasher.

Every little thing can make you cry but this list has you rolling on the floor.

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JAYS JOURNEY: It is called that because of the Journey I have had with my illness Neuroblastoma. I set up my web site not for myself, but to try and help others out there. I my aim is to get the word out there about Neuroblastoma and to let other parents of kids with NB know that it is not a death sentence. Of course being diagnosed with such a rare cancer is frightening, and doctors to like to give the worst case senarios - but they are not always right. I don't look at the percentages doctors seem to give in my opinion that is giving up before you even start. If you go in with a positive attitude, a strong will, courage and determination then you can achieve anything in life (Dream - Believe - Achieve). When first diagnosed with cancer - yes it was scary and yes it changes your life for ever, but it dosn't all have to be doom and gloom. I have had many wonderful times during my journey with cancer, and staying positive always with a smile on my dile (face) always gets me through those tough times. For those out there who are just starting the journey with Neuroblastoma and just learning about what Neuroblastoma is, please know that you can beat this illness. I am one of the very lucky one's who has been given a second chance at life and I believe I have been given that chance for a reason and that reason is to help others and to let them know there is HOPE. Giving up is never an option, so you kids out there, don't you ever listen to any negative thoughts from your parents, they must always stay and think positive, they are our strength and we need them. Us kids are the sick ones but we seem to be always looking after our parents and helping them to not be sad, and helping them keep a smile on the dile (face) weird hey, but true. When you walk through the kids cancer ward, you never see a kid sad, they always have a smile, they are always laughing - we may be sick and bald but we are sick on the inside not on the outside and we are still kids and we can still have fun whilst we are sick. So all you parents out there, take something from us sick kids, put a smile on your dile - stay positive and have fun with us, don't mope around feeling sorry for yourself because us kids we don't feel sorry for ourselves at all. We have been given a challenge - a big challenge and we need you parents to help us get through it. CANCER dosn't mean a death sentence - it doesn't have to be - so when you are diagnosed with cancer it takes you back for a moment - but from that moment you must have the strength to carry on and stay focussed and positive because that is what gets you through. My site is here also to raise Awareness of Neuroblastoma and to help raise money for Neuroblastoma Research, something I can't do on my own but I try to do as much as I can. At the moment I am trying to organise something special, hopefully something which will happen towards the end of the year, just takes a bit of organising but I am positive it will happen. My wrist bands and T-Shirts are selling well and all you AUSSIES out there, write to my mailing address at the top of this journal and order some wristbands please - money going to Neuroblastoma Research. NEW improved site is coming soon guys - yes when you log on to my site one day soon you will see lots of changes, it is not ready yet but is not far away.

My friend NAVADA: Please click Angel Navada my wonderful brave little Neuroblastoma friend who lost her battle with NB in 2006. It is the 1st Anniversary of Navada going to heaven on Easter Sunday, so please could every one out there visit Navada's site and leave a message of support to her wonderful mum Lori. Very soon angel Navada will be getting a little sister, a little sister she will never get to know, but I am sure Lori will let the new little baby know all about her big sister Navada and how very brave and special she was. I miss you Navada and will never forget you.

"JAY"

WWW.JAYSJOURNEY.ORG

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