Jay's Snow trip & Flight Simulator

Australian Bone Marrow Donor Registry
Australian Red Cross Blood Service
"JAY'S mailbag"

P.O. Box 2075

Fountain Gate 3805

Melbourne - Victoria - Australia

The Survivor Movie Who I am a True Survivor)

"G'day it's JAY"

G'day everyone - WHAT A BLAST it was going to the Snow. I have never been to the snow before and for those of you who are not from Australia - it is CHRISTMAS in JULY in AUSTRALIA and the snow is falling - the best season we have had in years. This trip to the snow was made possible by the wonderful people at "CAMP QUALITY" and lots of families got to experience the same. Yep it was a family camp meaning Darsly mum could come along on this one and we had so much fun. We went to Mount Baw Baw Alpine Resort & Village which is a 2 hour drive from where we live, and a very easy, spectacular drive through the mountains. As you can see I am standing at the entrance wall of Mt Baw Baw with lots of snow surrounding me. I had never seen snow (I've seen it on TV and it was the best) and not cold at all. Darlsy and I left for our journey up the Mountain, half way we had to stop to pick up chains for the car (we never needed them) but you are not aloud on the mountain with out chains. As we were picking up our chains a few more families we knew arrived to pick up theirs and we all stopped for a drink then headed up the mountain. It was all winding - narrow road and scary at times when other cars were coming around the bend from the other direction. We finally made it to Baw Baw and parked the car in all the snow and walked up to the lodge where the camp quality crew were waiting for everyone. We then had to go and get our gear (Jackets - pants - boots and darsly and I selected to do SNOW BOARDING), it took while to get all the gear but after getting all that sorted we then went down to our Cabin we were staying in for the next 3 days and we unloaded our luggage (it was exhausting) but fun. Our cabin was wonderful, it was two story, it had a lounge, kitchen and open fire place it was wonderful.

Darlsy mum & Jay (snuggled in the snow)

After getting all our gear into the cabin, darsly and I got all our snow gear on and we went out to all the snow and rolled around and made snow angels - this photo was taken just out side our cabin (cool hey) - the snow flakes were coming down and the entire weekend it snowed everyday.

JAY (Beautiful Mt.Baw Baw)

I was all excited to get out there and Snow board (I had never done it before) - it was great, the camp quality crew had organised for us all to have a 2 hour lesson. I picked it up really quickly (darsly was struggling because of her back). But is was easy, just like riding a bike and I became an expert in just 2 hours. It was funny watching Darlsy mum having a go - she did it eventually but she was very hesitant, she did not want to fall on her back (but good on her) she had a go and we had lots of fun. This photo was taken on a smaller hill, we decided to have a go at but then I wanted to go up the big mountain behind me.

Ready to have fun

This photo is of me and my snowboard - snow much snow and so much fun - it is the best thing I have ever done, I love snowboarding.

JAY & Darsly mum

On this day the snow was really coming down - darsly and opened our mouths and the snow flakes were dropping in our mouths. We had just had a big day of snow boarding and we were going to have some lunch back at Ed Ski cabin. Camp Quality provided all the meals and of course the wonderful chefs at Mt Baw Baw who cooked our Breakfasts, Lunch and Dinner. We also had lots of games provided by camp quality when it was night time - we could play pool, watch DVD's, play lots of games, it was great. We all stayed up very late each night.

Darsly mum & Jay (Just resting)

This photo is amazing - behind us is a really steep ski run - but the day before it was clear and you could see across the mountain with the sun beaming down - it was magnificent - but it was all frosted over on this day and the snow was falling. The table we a sitting on is covered.

JAY - Just about to snow board down the mountain

Darlsy mum & Jay (Ready with our snow boards)
Darsly mum & Jay (Snow angels)

Darlsy mum & Jay (rolling in snow)
The SNOW GANG

Go JAY

This is me coming down the highest mountain at Mt Baw Baw - I did not believe how easy snow boarding was. I went up on the T Bar lift to the top of the mountain (darsly stayed at the half way point) and I snow boarded down like I had done it for ever - it was so cool - I came down the mountain fast - it felt so good. I got to the bottom and I went straight back up again, and again and again.

Darsly mum & Jay (On the super tube)

This was cool - they had these big TUBES called the super tubes - you sit in the tube and get pulled up the mountain and then they let you go and you go around like this snow race track, you spin around heaps of times. Darlsy had a go and she loved it, so we kept going back on it.

JAY (yippeeeee)

BEN & JAY

Who's this you ask - well this is my good friend BEN - Ben is one of the actors in Neighbours and a good mate - we had lots of fun at the snow. Ben comes on the camps with us, he is a really great guy - funny - nice and great to hang out with.

Darlsy mum (Snow boarding)

Darlsy mum had a go, she was not going to let her back stop her from having a go. She did not go up as high as we did, but she had lots' of fun and she made it down the mountain without falling. She did find a good way of snow boarding - she sat on it and came screaming down the mountain, that was so funny.

JAY & Mate Alex

JAY & Darsly mum
JAY (Just having a breather)

PeekaBoo - it's JAY

This is me trying to get up the mountain - I decided not to take the lift - and walked it - it was exhausting, darsly mum was already at the top and captured me as I just poked my head over.
I have so many photos of our time in the snow (can't put them all up) but hope you enjoyed looking at these one's. We had a wonderful weekend at Mt Baw Baw and it was sad to have to pack up and leave. On our last morning we go up early, darsly packed all the car and go all the snow off the car and then we went back up the mountain for one last Snow board. It was another beautiful day, it was snowing and I made the most of my last time in the snow (for this year at least). After our last bit of fun we had to get all the gear back to the hire place. We said good bye to the Mountain and to everyone and we headed back down the mountain for home. We did not need the chains, we have a 4xwheel drive and that was all we needed to get back down the mountain. I was feeling a little sick on the way back down, all the winding roads were making me feel a little sick. We got back down to where we had to hand back the chains and we got something to eat and a drink and then headed on our way back home. It was sad to leave the snow, I just wanted to stay, but it was nice to get back home. I was very tired when we got back home so I went off to bed and had a sleep. Thank - you CAMP QUALITY for the fun time a the snow cant wait to do it again.

"QANTAS FLIGHT SIMULATOR MELBOURNE"

As you all know - becoming a PILOT is my dream - a dream I know I will eventually achieve, well something really great happened this week, something that usually only training pilots get to do. My darsly mum already knew the secret & did not tell me in case it did not happen. The wonderful Pilot on our trip home from Queensland (STUART) he asked darsly mum if it would be OK to organise for me to go in the "Qantas Flight Simulator", the only one of it's kind in the world, where all pilots from around the world come to train in. My darsly mum knew that I would love to, so Stuart and darsly mum kept it a secret from me until I got a phone call from "John" a pilot of 32 years and the manager of the Melbourne Flight Simulator. He rang to say there is a spot on the simulator this week and would I like to have a go (of course I said yes - I was so excited). So on Wednesday I had a day off school, and darsly mum drove me to Melbourne where the huge flight simulator centre is situated - we pass it all the time going to the Airport, but I have never been in it (this is a dream come true) I can't believe I am going in the flight simulator.

"JAY" - in front of Flight Simulator

I got to go inside this one I am standing in front of (this is the big one) this is the Qantas Boeing 737-800 I could not fly this one because it was booked for flying by training pilots - but I got to sit in the pilot seat.
WOW - how cool is this. This is me sitting in the pilot seat of the one I explained above, this is the real deal, it is just like being in the actual plane. There are so many buttons, so many destinations you can chose to fly to. This was set already for the training pilots to fly to Hong Kong, you can't see in this photo - but out the windows was Hong Kong Airport and sourrounding me were lots of huge planes, it all looked so real. There was a Singapore Airlines plane on the left of me and a Cathay Pacific Airline on the right side of me, we were sitting at the Hong Kong Terminal waiting for passengers to board. Whilst sitting in this one, Cain, another pilot he programed it for other Airports around the world and scanned around them for me and then set it back to Hong Kong Airport (So cool).
Above is me JAY with Cain (Pilot - middle) & John (Pilot for 32 years on right) in front of the Qantas 737 which is the Simulator I got to fly.

JAY & John

Above is me and John we are about to fly out of Melbourne Airport, it is night time, the city lights are glowing bright, the weather is fine - I am about to do my first flight in a 737, and my first take off from a big International Airport (Melbourne). WOW this is so real, the simulator feels just like the real thing, the terbulance, the sound, everything. Cain was in the back ground telling me what the diles had to go on, and John was my co - pilot and was letting me know if I needed to lift the nose of the plane, and how to keep it level (It was really easy and John was suprised at how I could fly the plane so well).

TOP photo - Flying out of Melbourne - and I did a perfect take off - and perfect landing. John then challenged me to land on my own without Auto Pilot - I had never done a landing on my own before. We approached Melbourne Airport, the run way I had lined up perfectly, the plane was steady, I was gradully taking down the spead and decending - then Touch Down - reverse thrust and to a stop (perfect landing). John kept on challengeing me - he then challenged me to fly under the West Gate Bridge (A big bridge in Melbourne) - funny though, John went first and he hit the bridge, I then had my go and guess what - I flew under the bridge frist shot. Then John said, do you want to do another landing, of course I just wanted to keep flying , I did not want this to end. I did three more landings and John was very impressed, I did not crash, I flew the plane like a real pilot and landed the plane with ease. WOW I can't wait to be a pilot - I just hope that I can get some sort of scholarship to help towards me becoming one because being a pilot is not cheap and darsly can't afford it and it worries her that she might not be able to give me the career I would like. Planes make me happy, I love planes, I love to fly and I will no matter what become a great pilot one day.

After my wonderful flight, John then showed me & darsly mum around the Flight Simulator building, where they do all the training for all staff on flights - this including the air stuards. The top photo is of the Rescue Slide which incase of an emergency (plane crash) you slide down and get all the passengers out. The other photo - that looks like a real plane doesn't it? well it's not, it is a training simulator for the flight crew, this is where they learn escape hatches, how to open the doors and do all the other training inside here. So that was my great surprise - might not be very exciting to you all out there - but very exciting to me - I did not want it to end.

I want to say THANK YOU to - STUART for organising it. JOHN for allowing me to fly your Flight Simulator and to CAIN for all the great directions whilst flying.

My Thoughts on having Cancer: "EVERY SECOND COUNTS" - I live today - because I can & so can you. People & my friends who have never experienced CANCER in their lives, don't really understand when I say 'Cancer' has made my life better. This is because my friends have never been close to death & when death looks you in the face, it makes you look at life and the world in a different way (I believe that is a HUGE adavantage).

**I can't imagine not being able to fly a plane - flying & being a pilot is the reason I am hear today - I live to Fly, and I live to do all things in life.

**What makes me proud of surviving cancer is that I can get up in the morning & look at myself, and my darsly mum can look at me too - that's life - that's all that matters (I'm here).

**If you ever get a second chance at life, you go for it - you live it to the full - you go all the way BECAUSE YOU CAN.

**People look and say - WOW Jay, you get to do so many great things, you are so lucky. I say, NO I'm not lucky - I get to do some great things because I have had to battle cancer and as a cancer kid I may never get the chance, so I take on every opportunity thrown at me and by getting out and living life to the full is something I thought I would never get to do because I was told I would die, and as a cancer kid - all cancer kids deserve all that they are giving because some kids just never get the chance to do anything because their lives have been cut short - and that is why I always say to everyone, to every parent, to always stay positive and strong and the diagnosis of cancer is not always doom and gloom, you keep a smile on the dile (face) and you still live life to the full - you get out there and you do what ever you want in life, your life is not over, you are still living, so LIVE IT TO THE FULL and treasure every moment - that is what I do and what I will continue to do not matter what.

My Health: Doing ok, the headaches continue to plague me, they are annoying but I try not to let them get me down. My tests are all coming up on the 7th August which is not that far away (I am a little nervous) but I will be ok. Have to have MRI Scan - MIBG - Lung Fuction Test -Urine Test - Blood Tests and lots more which as soon as I have the results will let you all know. Remember my darsly mum as well - she has another Spinal Scan on 9th August she is in a lot of pain with her back and we do know that she will have to have another spinal operation, but we will not know when that will be until she has the appointment. My darsly mum is just like me, not matter what pain we may have we still get out there and we have fun and we live life - I was proud of darsly mum snowboarding with me in the snow even though she was in lots of pain with her back, she still got out there and had a go.

Must go now - I hope you enjoyed my photo's and to all my friends, I will be around to visit you all soon, I have not forgotten you, I have just been busy at school with lots of homework to do and getting time to get on the computer has been difficult - but I willl get around to you all sometime this week. Take care everyone - Keep smiling, stay strong and positive always.

"JAY"

WWW.JAYSJOURNEY.ORG

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Canteen Camp/New Idea Magazine/Flying

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Fountain Gate 3805

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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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