JAY'S JOURNEY (NEUROBLASTOMA): Graduation Camp 2006 (Jay sick)

JAY'S (Smile Mail)

P.O. BOX 2075

Fountain Gate 3805

Melbourne - Victoria - Australia

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G'DAY it's JAY

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

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MY HEALTH

Update 25th October - I am sorry we have not done an update, but time spent at the computer is time away from JAY and he needs my time right now. He is not well - severe headaches - vomiting - leg pain - and at a stage of I don't know where else to go to - a barrage of tests do not give the answers - a little boy doesn't vomit day after day and have severe headaches for no reason. The answers I am after - the answer I will find - just keep going to doctor after doctor until I am given an answer instead of being shoved under the carpet all the time (frustrating). If any AUSTRALIAN doctor out there can give me a straight answer as to what is going on then feel free to put a private message in guestbook - have not found one doctor yet who can give me an answer. He doesn't have migrains so WHAT IS CAUSING THE SEVERE HEAD PAIN???? The vomiting - if any one can tell me please let me know - this has been going on for far too long now and I am getting really frustrated that doctors palm me off just like they did when Jay was first diagnosed and who was right then I WAS.I am sorry for venting but I am not happy - day after day Jay is home from school, I am struggling enough not being able to work and can't go out to work anyway because I have a continuously sick child. Anyway - I will leave it at that - I will attempt to do a JOURNAL for Jay on Friday - I thank everyone of our wonderful friends for caring about Jay and worrying about Jay, please keep him in your thoughts and help him get better. (DARSLY MUM)

Living my life to the full - that is what I am doing. Although I have health issues which always plague me - and probably will for the rest of my life, I am getting on with life and getting on with the second chance I have been given. Being diagnosed with not one but two Cancers - NEUROBLASTOMA and GANGLIONEUROBLASTOMA - GANGLIONEUROMA (I will explain them in my next journal) Neuroblastoma being the worst and most aggressive and deadly of them and is something you never wish upon any other child, but I defied the odds stacked against me and I am still here and I am very grateful to be given a second chance at life. My next journal I am going to write something about my illness so I can get more awareness out there about it - the more people who know about NEUROBLASTOMA the better. We are all aware of many common cancers, but Neuroblastoma is not a cancer people know about - I say I have Neuroblastoma and people say WHAT - I would like people to say - oh yes we know about that horrible cancer - but unfortunately they don't know about it because there is not enough awareness about it. So in my next journal or the one after when I get time I will be doing a big write up about what I have had to go through, about what I still go through, all about my illness and what can be done and what people can do to help find a cure. Finding a Cure is my goal, helping to stop this cancer is my goal, helping other parents to see there is HOPE when it comes to beating Neuroblatoma is my goal, to find that CURE so no more children have to suffer is my goal. I will keep on fighting for the rest of my life to stomp out this horrible monster of a cancer. The spot which sits on T11 - T12 of my spine - it will not get me - it cannot be removed it is inoperable but it will not get me, it will not stop me from living . My headaches and my leg pain are all effects of the cancer but they will not stop me either. With any illness in life, you must always be positive - being diagnosed with a terminal illness doesn't mean it is always the end. The word Cancer doesn't scare me, why be afraid of it, cancer doesn't always mean your life is over. Stay strong and positive and always believe you will win over cancer (I DID). All who are touched by Neuroblastoma should know that we do go through the same things and we should all support one another, we are all on the same mission in life and that is to keep us NB kids well and to beat Neuroblastoma, I know lots of kids with NB, I can't visit everyone but I have a list and long list of NB kids, not just me and we should all support one another on the journey we have been given - if I can give hope to just one child, give encouragement to another, give strength to more then I know I have done something - it may not seem a lot but each message I get from people really puts a smile on my dile (face) and makes me that more determined in life not to let NB get me again. My day's are not all good days, there are day's I don't talk about, there are day's people never get to see, people see the happy smiling Jay and that is who i want people to see (the behind the scenes stuff) well I am sure only the cancer families know what I am talking about). Cancer will always be a part of my life no matter what - through the good, the bad, the great, the horric times me and all my cancer friends will fight on 'Wouldn't it be great to be able to just eliminate cancer for good' lets not dream it, lets get out there and do it (donate to Neuroblastoma Research & other cancer so it can be eliminated for good). Sorry I go on and on, and sometimes around in circles, but i write what comes to my head at the time and I don't have a headache today so I am just writing and writing. (LOL)

MY PA

MONDAY 16th October - Today is the anniversary of the day my wonderful PA died - he is my darsly mums father and we miss him lots. My pa battled Cancer - he had Mesithelioma which is asbestos poisoning. Pa was a great Pa and it was not fair that he died from this horrible cancer. Pa is buried in the country where he use to live and we will be going up there soon because darsly wants to go clean up his grave. Losing my PA was hard, it made me more determined to fight my cancer NEUROBLASTOMA - I did not want to die like my Pa. My Pa was a healthy man, no one new anything was wrong with him until one day he complained of a sore arm - then he was diagnosed with cancer and he was gone in 6 months. I miss you lots PA and always think of you. My darsly mum said I look like PA and I am very much like PA.

THE WEEKEND

SATURDAY 14th October - It was a quiet weekend this weekend, we stayed home and had fun with my darsly mum seeing I had not seen her for a week. My mate Mick was aloud to stay the night and we had lots of fun and did not go to bed until 2am in the morning.

SUNDAY 15th October - Mick and I got up early then darsly got up and made us PANCAKES (yum), Mick was aloud to stay for the day and we went for rides on our bikes. I had one HEADACHE on the weekend but it went away quickly and I could still have fun playing. Mick had to go home about 5.30pm because Monday is a school day.

GRADUATION CAMP 2006 to

Phillip Island Adventure Resort

Wow - what a week it was on my graduation camp for 2006 - it was not only lots of fun, but also very very HOT here - we had temperatures in the high 30's (HOT HOT HOT) but we all made sure we had a wonderful time and here is what I did. Only a couple of headaches and no nose bleeds.

MONDAY 9th October - Darlsy took me to school where we all assembled outside the gym at 8.40am. We all had a briefing with all the teachers first and then the Coaches arrived and we loaded up the Coach with all our luggage. I was very excited because I had not been on a school camp - I had only ever been away with CAMP QUALITY so to do away with my school friends I was really looking forward to it. The Coaches were all loaded up and we had just a few minutes to say good bye. I gave Darsly a big hug and kiss and we departed for our Adventure to PHILLIP ISLAND ADVENTURE RESORT. Phillip Island where we have the little fairy penguins and is a tourist spot - just click on Phillip Island Adventure Resort and you will see the beautiful place I went to. We all waved goodbye and off we went. We stopped on the way for morning tea had feeding time with the PELICANS. After morning tea it was then on to the RESORT. We unpacked our luggage, was allocated a cabin and I was in the cabin with my mate Mick. We were given a welcome lunch (which was real yummy) and then we assembled for Orientation of the campsite and rules. After that we had an activity session before early dinner which included - HIGH ROPES - TEAM RESCUE - LOW ROPES - BOULDER WALL - TWIN FLYING FOX - RAFT MAKING and CANOEING. We were exhausted but that was not the end yet of day one, still more to come. We had early dinner because we had to get on the Coach to go to the PENGUIN Parade (jus click on to PENGUINS PARADE (Phillip Island) and you will see the Penguins - night time viewing and explore the display areas. It is so great - the little Fairy Penguins each night make their way up the beach to their burrows after a big day out catching fish - we sat in the grand stands which were built to view the penguins and they woddled their way up the beach to their burrows. We got back to camp late but were allowed to watch a DVD and then bed time.

TUESDAY 10th October - It was up early for breakfast - we had to fuel up so we could get through todays activities. In the morning after breakfast we had two sessions of activities which included the GIANT SWING and ARCHERY. After lunch we had MINI OLYMPICS (so funny) and in the evening after dinner we did a NIGHT WALK to SMITHS BEACH - it was a beautiful hot night and so nice on the beach and night time (we all got a bit wet and splashed each other) but it didn't matter it was a hot night.

WEDNESDAY 11th October - Another big day of activites and a day which hit 36 degress celcius (very hot and hot northerly winds) was the hottest October day in 100 years. We had breakfast and then had four sessions of different activities. In the evening after dinner we did a thing called AMAZE "N" THINGS (This was a fun fun outdoor amusment place where I got to play mini golf - they have an upside down house - yea true) and a maze and lots more and later in the night we did a night walk to see creatures of the night with our torches.

THURSDAY 12th October - We were in for another very hot day - hotter than yesterday and the winds were blowing a very hot northerly - the temperature reached 35 degrees celsius and we got to swim today. In the morning we walked to SMITHS BEACH - we did ROCKPOOLING with a PARK RANGER - he explained all the creatures in the sea and the rock pools - we palyed beach games and made these HUGE sandcastles. In the afternoon we did two rotations of activities - one of them a FREE CHOICE. During this time the pool was open and of course I was going swimming (in this heat where else do you want to be). We were of course supervised by a qualified instructor. After dinner we had a DISCO - it went on all night (well real late anyway) .

FRIDAY 13th October - OH it's the day we come home. In the morning we all had to pack up our belongings and tidy the cabins. We all had a great breakfast and then departed for the NOBBIES BOARDWALK (so cool). After that it was lunch time and we stopped at COWES main beach and had a wonderful lunch. Then it was time to say goodbye to PHILLIP ISLAND and the Coaches headed off to our school. We arrived home about 3.15pm where Darsly was there waiting for me.I got home and it all caught up with me and I fell asleep on the couch (darsly said I was asleep for hours) and seeing my little dog Snowflake was great, darsly had given her a wash and put a bandana around her neck to make her look beautiful, and she did, and when I walked in the door she gave me lots of kissed (she missed me lots and I missed her) she is my best medicine.

Laughter - is - the - best - medicine