Canteen Camp/New Idea Magazine/Flying

Australian Bone Marrow Donor Registry

Australian Red Cross Blood Service

JAY'S mail bag

P.O.Box 2075

Fountain Gate 3805

Melbourne - Victoria - Australia

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"G'DAY it's Jay"

G'day all my friends and supporters, WOW it's been a few weeks since I did a journal (I'M STILL ALIVE) so don't worry, just had a lot of things on and it is school holidays here in Australia. I hope all my little friends have been kicking cancers butt & I will be around to visit you all soon. So what's been happening you ask: Well the first week of my school holidays I got to go on Camp with my wonderful friends at CANTEEN they are another organisation I have just become a member with who look after kids with cancer. This was my very first camp with them because I have only just become the right age, and I made so many new great friends and had a great time. I will write all about my time at camp after I tell you about the "New Idea Magazine Article".

Above is the article in the "New Idea Magazine" - if you zoom in out you should be able to read it. This article was done when I was in Queensland with the Tour De Cure . The photo was taken at Movie World on the Gold Coast with Shrek (there were Lot's of photo's taken) but they used this one above. I was interviewed by the editor of the magazine, she asked me lots of questions, I told her about my journey with Neuroblastoma and lots of other things. It is hard to write a 12 year journey in such a tiny article, but my aim was to just raise awareness of Neuroblastoma, and get it out there that this illness is nasty and people need to know about it and help to raise money to find a cure. And to let parents know that just because your child might seem to just show symptoms of a little cold - it might not be (just like me) I was told I had a little cold, but there was a monster growing inside me - so to all the parents out there, always question doctors if you don't think they are correct, because they are not always correct and I nearly died, but it was only because of my wonderful darsly mum who new that I did not have a cold, it was only because she kept pushing to find the answers that I am here today. I will continue to get the word out there about Neuroblastoma, I will continue to raise awareness, I will continue to raise money to find a cure, I will continue to help other families who are going through the same thing battling Neuroblastoma. To know I have done something to help makes me feel good inside. I want nothing, all I want is to know I have help another family, another child. I might not be able to save a life, but I can help in letting parents know that you can win the battle and doctors are not always right even when they say there is nothing more we can do, I don't believe that, there is always something you can do and you NEVER GIVE UP - you keep on fighting all the way.

"ROYAL CHILDREN'S HOSPITAL MELBOURNE"

Now - back to the week I had at camp. The photo above is the Royal Children's Hospital Melbourne and the hospital I go to sometimes when I have to have some special thing's done. Lots of kids go to the Royal Children's, but we also have others hospitals connected to this one and that is Monash Medical Centre where I go to the Children's Cancer Centre there & they also have Ronald McDonald House - we go back and forward between both these hospitals. Anyway, CANTEEN their office is across the road from the Children's hospital.

On day 1 of my camp away with CANTEEN, we met at the Melbourne Zoo we loaded our luggage into the coach then we all entered the ZOO for the Amazing race. Yep we did the Amazing race around the Zoo, we had checkpoints to find and at each checkpoint was an activity, it was so much fun and we spent all day there (as well as looking at all the animals). We then left on the coach to our camp which was Healesville and we stayed at Ferngully Lodge, we unpacked all our luggage, settled in and then were explained the rules and an explanation of CANgregation which is where you bring up issues that might need to be talked about. Then we all signed up for ARTY FARTY DAY (so funny) that is where we got to do - Pottery - Tattoo making - Illustrating which I did.

Day 2 We made a puzzle about our CANCER - then we made a MOVIE and I did Austin Powers and I was Basil. After we made the movie, later that night we had the ACADEMY AWARDS night where we got dressed up and the awards were announced for best actor, movie and more.

Day 3 We went to Warburton and we got to do Marshal Arts and we had Peace Groups where we got to know others and to explain about the cancer we have and then we had the Peace Olympics where I had to make a sculpture out of balloons and our group did the South Pole because we were from the Antarctica. Then we did a WEETBIX race, there were 2 people in a team, there was me and Alex against the rest, we had to run and eat the Weetbix and do it in the quickest time (dry old Weetbix).Then we had a Hockey match, there were 2 newspapers rolled up which were the hockey sticks and a mini Happy Sack and we had to get it into the Chair goals, overall we came third.

Day 4 ARTY FARTY Thursday - I did Illustrating, there was this dude who was an illustrator who taught us how to draw - it was really cool. Other people did pottery and tattoo making. That night we had a PEACE FESTIVAL, we had drum people come and taught us how to play the drums and do lots of different beats and a TRIBAL DANCE. Then a Circus came and we were taught the circus tricks and also one person breathed FIRE (I was not going to do that), that night I ate 4 bags of fairy floss, 3 bags of popcorn and had Tattoos put on me (not real one's) .

Day 5 This was our last day, getting all our luggage together, cleaning up, that took a few hours and then we left for Melbourne, but before we got there we had a stop. We went to the NEIGHBOURS set to Ramsay Street where we got to meet the Neighbours stars, they told us all about Neighbours, took us around to have a look it was really cool, then we had to leave to get back to the CANTEEN office where our parents were waiting for us. There were lots of photo's taken on camp, sorry I don't have any to put up at the moment because I did not have a camera, it was the Canteen people who took the photo's so I have to try and get hold of some from Canteen and I will put them up on the next journal. We got back to Canteen at about 4.30pm where Darlsy mum was waiting to pick me up. I had to say good bye to all my new friends, but I have their phone numbers and email's so we will be in contact. It was the best Camp ever, I had so much fun and made lots of great friends. I was really tired when we finally got home, so I went to bed and that is where I stayed while darsly mum unpacked all my smelly luggage (lol).

ABOVE: Is my really COOL Oncology doctor (DR. Peter Downie), he saved my life and he does lots for cancer research. He not only saves kids lives and spends many hours doing it, he also makes time to get out there and join in on Charity events (that is what all doctors should do). Peter deserves more than a medal for what he does, but I suppose for him saving a child's life is reward enough.

"JAY" Flying High

ABOVE: is me JAY sitting in a very big PLANE (can't say what it is) but I got to do this on the way home from Queensland (this is at night time), as you know I want to be a PILOT and I know a lot about planes and I am working my way through school to become a PILOT. It is a dream as it is very expensive to become a Pilot, but I am hoping my dream will come true and hopefully I can get some kind of scholarship so it doesn't cost darlsy mum so much.

ABOVE: This is actually me JAY flying a plane for real - I got to go on another great day with CANTEEN, knowing I loved planes, I got to fly one, I flew it all the way from Moorabbin airport to Tyabb Airport and all around Melbourne. This shot is of me flying back to Tyabb.

ABOVE: The top photo is of me Landing at TYABB airport, this one with me looking around is just about to land (pretty cool hey).

I'm on the Left hand side Flying the plane

ABOVE: Is me landing the AIR COUPE' this is a 2 seater and I got to fly this one from Morrabbin to Tyabb and around Port Phillip Bay, it took about 1 hour. It was a beautiful day for flying over Melbourne and to be able to do it all on my own was amazing.

Me in the Helicopter Air Ambulance

When we landed at Tyabb, there was lots for us to do, including the AIR AMBULANCE HELICOPTER which I got to sit in. This is an amazing air service and the guys who are a part of it save kids like me. Lots of kids get air lifted in this Air Ambulance and I have been one of them.

This is me in the cock pit (cant' mention name of plane) going up to Queensland - an opportunity to do something I really love and to see it all up close is even more amazing to sit in the seat and see all the instruments. I live and breath planes, I am very smart and I know a lot about all planes and I will become the pilot I want to be someday and maybe one day all of you out there will have me as your Pilot - that would be cool.

Me again in the cock pit of the plane going up to Queensland. I got to do some really cool stuff and also will be getting to do something even more cool soon (to do with planes) I will keep that a secret.

MY HEALTH:
My health has not been too bad, compared to what it has been like I suppose you could say 'IM DOING OK". I continue to have the really severe HEADACHES & NOSEBLEEDS, but I was lucky on camp not to have any (except when I accidentally got punched in the nose) my nose started to bleed. When I got back from camp I had had a nose bleed in the car on the way home.
My tests: All my tests are coming up on the 7th AUGUST I suppose you could say I am anxious, excited as well as a little scared. I will be having MRI SCAN - MIBG - CATECHOLAMINE which is a special urine test which shows up positive or negative to Neuroblastoma - FULL BLOOD TESTS - LUNG FUNCTION TEST - and more which they are sorting out still regarding my Headaches and Nosebleeds. I know I am a survivor, and I will continue to be a survivor so I can help others out there just like me. When I have my tests I will tell you all about the results as soon as I get them (I know they will be great results). Still I have the spot which sits at T11-T12 of my spinal cord, lets hope it is still just sitting there and it has not grown in size.
Below: I have left some links for families of NB kids to have a look at, for those who are new to Neuroblastoma they are good links to know about, especially when you have just been told your child has Neuroblastoma and you have no idea as to what it is and then doctors pound you with all these test names you have never heard of before .
myc gene
Catecholamine test
MIBG
MRI SCAN
Neuroblastoma survival rates
New approaches to Neuroblastoma
Neuroblastoma info
Genes hold clue to cancer cure (Neuroblastoma)
About 3F8 Monoclonal Antibody Therapy

My Darlsy mum: I can't forget about my wonderful darsly mum. As you know she is a tower of strength to me, even though she has her own problems with her back she is always there for me no matter what. As you know she had Major Spinal Surgery, it has been very painful for her and has not been able to work, which has made things very difficult for us, but she always soldiers on. Darsly will probably have to have another Spinal Surgery very soon. She goes to her Specialist on the 9th August to have more CT SCANS, yes that is a busy week for us, me at the hospital on the 7th and Darlsy on the 9th. This next scan for darsly determins what the surgeon is going to do. Because of all the Titanium in my darlsy mums back it is causing a lot of pain because my mum is only very small and the titanium has nothing to cusion against so it is causing pain and it will have to be taken out and also the bone graft has not healed properly so she will have to have another bone graft, but we are both very tough and we help each other out and we will both get through just like we always do.
To all my NB friends & parents: When the going get's tough the tough get going and I know you will all fight in your own special ways. I can not give guarantees but I can give HOPE to all of you that you can win the fight. When a doctor say's to you - There is nothing more we can do - I think that is just so wrong for a doctor to say that, because there is always hope, and you never give up on a child. So - if a doctor say's that to you, don't you give up, you go searching for better answers, because I know for FACT that a friend of mine was told that there was nothing more we can do take him home and let him die and that was when he was 10 - he is now 17years old, because his mother did not listen to that and searched for answers which she found. Neuroblastoma may be a tough cancer, but us NB kids are just so much more tougher and more resiliant. No - not all kids respond to treatment in the same way, and there is no way any parent can tell another parent that this will work for you, but seeking advice from another NB parent is somtimes comforting but in the end it is up to the actual parent as to what is best for their child. I do hope that I help in some small way. I am living proof you can beat it, so me and darsly must be doing something right.
I must go now, please don't forget about my WRISTBANDS, take a look at the last journal and you will see them, I raise money for Neuroblastoma Research and if you buy one then you know that you have done a small part in saving a childs life.
I go back to school on Monday 16th July, but this weekend I am doing something exciting which I will tell you about on the next journal with lots of photo's.

Take care everyone

Remember that Pain is Temporary Quitting is forever

Never Give up - because giving up is NOT an option

"JAY"

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