JAY'S JOURNEY (NEUROBLASTOMA)

G'DAY MY NAME IS " JAY " I'M 13 YEARS OLD & LIVE IN AUSTRALIA WITH MY DARSLY MUM,DOG SNOWFLAKE & MY MATE PORKA. "I HAVE NEUROBLASTOMA - IT DOSNT HAVE ME" I WANT TO RAISE AWARENESS OF NEUROBLASTOMA SO WE CAN FIND A CURE SO NO OTHER CHILDREN LIKE ME HAVE TO SUFFER I HOPE I CAN INSPIRE EVERYONE TO HELP ME FIND A CURE & SPRED THE WORD ABOUT "NEUROBLASTOMA & ME". STRENGTH - COURAGE - DETERMINATION - HOPE & INSPIRATION CANCER IS NOT KILLING ME - IT IS PUSHING ME TO LIVE.

Tuesday, June 03, 2008

Jay's milestone 13th Birthday

G'day it's JAY

"CANCER IS NOT KILLING ME"
"IT IS PUSHING ME TO LIVE"
To my very Special Jay you have just celebrated your
13th Birthday and I am so very proud of you
You are now a teenager & those doctors said you would never make it
You are a true inspiration to not only yourself but to me your mum
and to many all around the world - you have so much
Strength - Courage and Determination and it is because of that you have defied the odds.

Lots of Love & Hugs Always

DARLSY MUM
**********
G'day everyone - this is Jay's Darsly mum doing this very special journal for Jay this time as I know Jay would not say the things about himself which I would like to say and have everyone know about.

JAY'S SPECIAL 13TH BIRTHDAY

What a milestone for my wonderful inspirational son - he just turned 13 years old, that is probably not that special to the normal person, but for me and Jay this is the biggest milestone ever, because he as defied all the odds stacked against him and he has fought and was never going to give in to what the doctors said to him. To be told you would never make it, that is a big statement, and when told that, Jay from that day forward was not going to take it, he gained strength and courage and was determined to say to the doctors one day "I TOLD YOU SO" I told you I would make it. And he did, it is nice to be able to say to a doctor, they were wrong.

People who never experience living with cancer, really don't know what it is like, how it affects your life forever, how it changes your life forever, how you lose and have to give up things in your life for your loved one who battles cancer, as much as that has been our life, and it has been a struggle and still is, giving up things to keep a loved one alive is all worth it and there is not an option. I gave up so much in my life so I could keep my son alive but I would not change anything for the world. Jay did not ask to have cancer, it is not his fault, it is just something that came into our life and you find a way to deal with it. As much as the word cancer seems to scare alot of people, just remember it is just a word, and as bad as it is having a child diagnosed with cancer, it alot of ways cancer has been a good thing in our life. Jay still has a mass which sits on his spinal cord at T10-11-12, as mentioned it is like a ticking time bomb, but Jay lives with it, knows it is there but still gets on with life and lives it to the full and below I will explain to you what we did for his 13th Birthday, something which was an easy challenge compared to all the other challenges which have consumed his life.

My 13th Birthday on top of the Sydney Harbour Bridge with Darlsy mum

Jay and I decided to go to Sydney for Jay's special 13th Birthday, and what do you do when you get to Sydney on your 13th Birthday??? you climb to the top of the Sydney Harbour Bridge at twilight and you sing Happy Birthday at the top hanging onto the Australian Flag. This is Jay and me darlsy mum at the top of the harbour bridge looking over the Sydney Oprah House, it was the most beautiful night, not a breath of wind.

Jay & Darsly mum (at the top of the Sydney Harbour Bridge)

When we reached the top of the harbour bridge, Jay said - is that is, can't we go any further, that was so funny, as we were at the top, there was no more steps. Jay loved it, he could have just kept on climbing. This photo was taken on the West side of the bridge, showing the city in the back ground.

The Gang we climbed with for 3 hours

All up the climb took 3 half hours, by the time you put all the gear on, which there is a lot of. You have the sexy out fit as you can see, you have clips and lines which attach to the bridge, nothing can be free, you can't take anything with you, all the items you have are supplies and clipped to the out fit. You have a radio transmitter and head peace so you can hear the guide in front. You have gloves, beany, jacket, night light which are all attached by clips. We were lucky, we had a small group with us and we were the last climb of the day. The guide was in front, Jay was behind the guide, I was behind Jay, Michael from Nevada in America was behind me then we had the family behind Michael. It was a great group to be with. Michael from Nevada was a very nice person, he was going back home the next day after being away for 16days and decided the last thing he do in Australia was the bridge climb. The family they were celebrating their 29th Wedding anniversary with their children and Jay and I we were celebrating Jays 13th Birthday. As soon as we reached the top everyone gathered around and sang Happy birthday to Jay, it was wonderful, and Jay had the biggest smile on his face. He had just conquered something in his life, just another hurdle he wanted to get over and he did it and I am so very proud of him.

Jay in is sexy Sydney Harbour Bridge Outfit

This is the wonderful outfit you have to wear before you climb the bridge. This is the outfit without all the attachments.

Jay on the Harbour

Jay - Taylor (Friend) & Sydney Oprah House

Before Jay and I did the bride climb, we went into Circular Quay and walked around looking at to what Sydney had to offer. Lots of boats on the harbour, it was a beautiful day and Jay was enjoying his birthday with his mate Taylor.

Jay on the steps of Sydney Oprah House

Sydney City in the back ground
Just relaxing with the Oprah House in the background

The Oprah House is made of millions of little tiles
A great view as we make our way to the Bridge


Even I got to be in a photo (lol)

This view above and all below are from the River Cat we caught from Parramatta. Jay and I jumped on the River Cat which is like a huge catamaran and takes you down the river into the harbour and into Circular Quay - on a good day it is great to stand up the front out side - but on the way back late in the afternoon it is freezing so we went inside and sat down.


Check out the Hair doo - a bit wind blown
Jay flying again

As you know, Jay loves planes and wants to be a pilot, and any opportunity is taken when he gets the chance to fly a plane. A good friend called up who owns a plane and asked if Jay would like to come fly - of course the answer is YES. The biggest smile comes across Jay's face when he is near or in a plane.

The view Jay got whilst flying the plane
WHAT a view - Jay was flying the plane over Melbourne - and took this photo of St.Kilda and Luna Park which is an amusement park - it is a great photo - the day was a little foggy but he enjoyed himself.
The Smile SAY'S it all


This is the plane he got to fly - I did not go up because I rather a bigger plane - alot bigger in fact, I feel very enclosed in these little planes and I don't feel safe, but doesn't matter what plane for Jay, he will fly any type of plane even though he wants to be a pilot for Qantas.

Jay's Health News

Jay as usual gets on with life, he doesn't let anything get him down at all. Life for us is not always rosy and people out there see this great side of doing these little things in life but they don't see the other side. EVERY day JAY walks around with a ticking time bomb inside him - although it play's on my mind every day as to what is going to happen, I try very hard as Jay's mum to stay strong and positve for him because Jay is my rock and he worries about nothing. On Jay's spinal cord at T10-11-12 is a mass which sits there - not growing and not shrinking but things could change, we don't know - if things could be predicted then life would be alot easier, but because we can't predict as to what is going to happen, we try to fit in as much in life as possible. We are not a rich family, it is a real struggle every single day - I work 6 days a week, it is hard just to pay the bills and more difficult trying to keep a roof over our head - we don't have any luxuries in life, we can't afford to do that much. The only reason we got to go to SYDNEY was because of the generousity of a great friend of ours in America. Our friend JAMES, gave Jay the opportunity to go to Sydney, if it were not for James, Jay would have had a boring 13th Birthday at home doing nothing as I could not afford such a trip. James you are an amazing person and a great friend and what you did for Jay was very muc appreciated. Jay has scans coming up, blood tests and other tests, not sure of the dates yet, but I am very anxious and in a way very scared because when these test come up you just don't know what to expect (even though I am positive) it is still always very scary. Well that is it for now, Jay will be back for the next journal update, and I know that will also be a special one in the next week or two. He is doing something very exciting this weekend, something he looks forward to each year.

Thank you to all Jay's supporters out there and sorry we have not been able to get around to say hi to all our little friends lately but our computer crashed and the internet went off for weeks and it is only in the past week we have had it all back on again. Those who had our email address, I will get in contact with you soon, as that email address has changed.

Please remember to go and sign Jay's GUESTBOOK as he loves to get the nice messages, it really makes him happy.

JAY & DARSLY MUM