The week I lost two Great Mates
JAY'S (SMILE MAIL)
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MY WEEK
This past week has been the worst week of my life - I lost not ONE but TWO of my MATES my all time HERO'S who took the time to care about me and my illness and below I will talk about my Mate Peter Brock - V8 Supercar Driver who was my mate and now gone. Australia is mourning TWO great HERO'S - Steve Irwin and Peter Brock . Although I have been very sad this week, I must get on with my life the best I can. Peter Brock told me to enjoy life and that is what I aways say to everyone out there. Enjoy your life, live you life to the full now because you just don't know when it will end. Living with my illness Neuroblastoma has been a challenge, a challenge I battled, conquered and hopefully won, I how hard it is to try and survive and how close many times I came to losing my life. That is why now, I make the most of my life and do everything kids love to do and also get the opportunity to do things other kids don't get the chance to do because of my illness. Meeting my hero's, hanging out with my hero's is an opportunity I don't think I would have got it I did not have cancer - which is a shame, but true. I got to not only meet Peter Brock, he became my mate and was always there for me and he did a lot for kids with cancer. Losing my mates this week has been very hard, I sometimes say to darlsy, no it's a joke, they didn't really die did they - but then I do know that it is true, my mates will never come back. This week has been the worst for Australia and Australians. I am not doing a big journal today, I am going to wait and do a big journal sometime next week.
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JAY - NEUROBLASTOMA - DARLSY MUM (SPINAL SURGERY)
I have been doing ok - but still get a lot of headaches which have been annoying me all week. I stayed at school and did not come home even though my headaches were killing me I wanted to stay at school because I had a lot of things to do. My headaches, my leg pain are the worst but still we have not been able to find the coarse of them. As you know I was unable to go to the Neurologist appointment I had waited for - for over 8 months because we did not know we had to pay a fee and darsly did not have the money and now we have been told I have to wait another year before I can see the Neurologist. After tackling so much in my life, I think I can put up with the headaches and try to get on with things the best I can, but it would be nice to know why I get them.They have already ruled out Migraine, and say I don't have symptoms of migraine but was never given a reason as to why I get them so severe. With my Neuroblastoma, I have been a real lucky one, but it was not easy battling Neroblastoma and there are no guarantees that things will always be ok. I do have the spot which sits on my spinal cord at T-11 - T12, it is like a time bomb sitting there, it could sit there, it could explode. If it could be removed it would be a great then I would not have to worry and darsly would not have to worry, but where it sits it is inoperable and has to stay there and we hope it sits there until I am 80. Neuroblastoma is unpredictable and can come back at anytime - it is aggressive and it is a monster and that is why I continuously try to ge the message out there about NEUROBLASTOMA - I want to get the AWARENESS out there about NEUROBLASTOMA, a horrible cancer which no one knows about and which has no CURE. I can talk about lots of difference cancers to people, and they know what I am talking about but when people ask what type of cancer do you have and I say NEUROBLASTOMA - they look stupid and say WHAT the hell is that - never heard of it - well in my opinion that is not good enough and people need to know that NEUROBLASTOMA is a silent killer which people need to know about and this cancer is killing too many innocent lives. If you can give to NEUROBLATOMA RESEARCH please do so, you will be helping to find a CURE. Go to my NEUROBLASTOMA page and there are details of how you can help find a CURE. Oh my CHIN - it healed pretty good and I had the stitches out last week, but my SHOULDER is still very sore after my great bike crash. Darlsy has not been doing that good this week, her back is giving her a lot of pain. Her spinal surgery was a big major operation and the healing process takes a very long time. Darlsy is doing things she should not be doing and the pain she has is really bad. She is unable to go back to work for atleast another 5 months which makes things very difficult for us. Darlsy wants to go back to work, but she may not be able to go back to work at all if her back doesn't heal properly. Darlsy is pushing herself to get fit again but she is hurting herself more by doing it. I try to help darsly when I can, we have to help each other because we only have each other. Darlsy is a Personal Trainer/Fitness Instructor but may not be able to go back to doing that type of work so she is trying to figure out what else she might be able to do because the range of movement darlsy has at the moment is not good.
My Stethoscope of the Future - I got third place, which I am happy with, but I did think that my project was a bit better the one's that won but it doesn't matter, I got third and a certificate and my project was recommended to the local paper for patent, also was acknowledge for out standing work and the judges all said it was an INGENIOUS IDEA. I am glad the project is all over and done with - it took me 2 months to complete. There is only one week left of school - yep that's right , on the 15th September that is the last day of term three and we get two weeks holiday and I can't wait because I am going on Camp Quality for the first week of my holidays and I am looking forward to the break away with my companion.
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The above picture is me JAY with some of the things Steve Irwin gave to me -it was so funny getting all these creatures - these are just some of them sitting on me - but that is what Steve was he was a man who loves all creatures big and small. The picture of his family which is signed by Steve will be treasured. Thanks Steve for taking the time to care about me and I will miss you mate.
My mate Peter Brock - I will miss you so much mate. Peter Brock died on Friday 8th September doing what he loved. Peter was a legend V8 Supercar Driver and Hero to thousands of Australians. Peter was driving in the Taga Ralley in Western Australia when he lots control and slammed into a tree which killed my HERO my MATE instantly. I was lucky enough to say that Peter Brock was my mate. Peter did a lot for kids with illness, and other causes and he took the time to always visit me in and out of hospital not only during difficult times in my life but also at any time of my life. The above photo's are very precious to me. Peter took me for a ride in a LOTUS around Melbourne, just him and me and each time we stopped at traffic lights people would be looking at us becaue they new it was the famous Peter Brock and I had the biggest smile on my face because I knew how lucky I was to be sitting in a car with Peter Brock. The photo above of Peter Holding me - he was just like a dad. The best thing was that Peter remained friends, he remained my mate and never ever forgot about me, he would always call or email and check up on me and when I was in hospital he would take the time to come see me. I have lots of memories of Peter and on all the things he signed for me he would always write - ENJOY LIFE - and I made sure I always did, not matter how hard my life was, I always enjoy life because that is what Peter told me to do. Peter was a very SPIRITUAL man only those who new him knew this, and Peter always had time for me - always. Peter enjoyed life right to the end. It is ironic, this week I lost TWO of my Hero's and they died four days apart from each other, and their birthdays are four days apart from each other but on different years. Peter is going to have a STATE funeral next week and I will be there with my darsly to say goodbye. Thanks for the great times mate - I will miss you MATE .%20008.0.jpg)
When I was at the V8 SUPERCARS last week, I caught up with my CAMP QUALITY companion JEFF. He is a Coach driver and had to drive a load of school kids down the the V8's. Jeff and I had lots of fun just like we do on Camp. Above is the little Four Wheeler which the V8 Drivers ride around in. Darlsy said, quick you two jump on the Four Wheeler and I will take a photo, so Jeff and I jumped on (Such a cool photo). Jeff is a wonderful man, he takes care of me when I go on Camp Quality, all the companions are volunteers and do it out of the goodness of their heart. JEFF and I have so much fun together and it is only one week to go and I get to go on CAMP QUALITY with JEFF. We leave for Camp on the 17th September and I will have so much to tell after I get back.
ME 'JAY" In the simulator
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Last week at the V8 Supercars, they had these Simulators where you can play V8 Supercars three which is a playstation game. It is just like driving the V8 Supercar around the track - it is so cool. I had lots' of goes on it and would love to have one but they cost over $3,000. I did really well on it and did not want to get out - I was having so much fun. %20008.0.jpg)
Now this is one COOL truck, this is the V8 SUPERCARS AUSTRALIA truck, this is the truck which has all the media people inside. It is all set up inside with computers everywhere whatever happens it is all recorded straight away on the V8 Supercars website. This is the truck which my mate COLE the boss man hangs out in and lets me look inside and Cole is the one who makes everything possible for me.
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MY WONDERFUL FRIENDS
Please know that I think of each and everyone of you daily - I can't always come to visit each day, but I do get around to some of you when I can. If I have not been around to visit you lately, don't worry I will get there and cheer you all up. I want to thank all the people who have sent me SMILE MAIL, it is so cool to receive mail from overseas. Some of you would have got a POST CARD from me as I did send a few out a few weeks ago, I still have a list of people I have to send POST CARDS to and hopefully I will get those out this week some time, so please check your mail boxes. REMEMBER my little sick friends and families, you must NEVER GIVE UP, and as I do, not matter how hard things get you must try to live life to the full and enjoy what you have today and make the most of it and treasure everymoment. Life is unpredictable and we never know when our time is up, so instead of winging and griping about the most petty things in life - get off your butts and enjoy what you have today because it could be gone tomorrow. Us cancer kids tackle and battle a lot, but we never complain, we have a mission in life and that is to live - as we fight for our life we never complain. REMEMBER - PAIN is TEMPORARY - QUITTING is FOREVER as tough as it gets you must fight on and LIVE STRONG - cancer can be beaten. PARENTS please stay strong, stay positive, never give up on your kids because us cancer kids are tough, tougher than cancer and we are tougher than you may think we are. Please keep BIG SMILES ON YOUR DILES and I will be around to visit you all very soon.
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posted by *JAY* @ 2:30 pm
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