What a Headache

JAY'S (Smile Mail)

P.O. BOX 2075

FOUNTAIN GATE 3805

MELBOURNE - VICTORIA - AUSTRALIA

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"G'DAY MATES it's JAY"

Sorry it took me so long to get a journal done - but I have had a few headaches all week and it has been hard to sit at the computer - I can't think properly when I have headaches. - I think I wrote all over the place this time - oh well at least I got it done.

LUCKIEST KID ALIVE

As you all know, my cancer I have battled is NEUROBLASTOMA, and I believe I am the Lukiest kid Alive - because I see so many little kids who just don't make it - I sometimes wonder about if that could be me - it could have been me, but for some reason I was given a second chance at life, not many people get a second chance at life and that is why I feel so lucky. LUCKIEST KID ALIVE - I'M STILL TICKIN - I'M STILL KICKIN and I am so thankful for that. If ever you get the chance to be given a second chance at life - make the most of it, that type of opportunity dosn't come knockin very often. While I am gone, I have asked darsly mum to write a few things about my journey with Neuroblastoma, she has a lot of good memories and not so good memories to tell, but in my case I guess the good memories out weigh the bad because I am here to tell my story. Not many NB kids get the chance to tell their stories because unfortunately the majority of the kids with NB do not survive, this is not because they gave up, NB kids never give up, it is only because their little bodies have just had enough and each NB child although we have the same illness, we all tackle NB differently. I am hoping that I can give hope to others who have kids with NB, hopefully by letting others know you can survive NB will give them the hope to continue the fight and never give up, the main thing is to always be positive, ask questions don't be afraid, if you don't get an answer get another opinion, and stay strong for your child. Darlsy stood up for me, darsly fought for me, she always asked for the truth, she knew if doctors lied to her and she would go in fighting for me day after day - a list of questions she would have and she would not leave the doctors office until she had ticked off each question and made sure it had a truthful answer beside it, if she was not happy with an answer she would go higher and get another opinion. Fight for your kids, don't give up on them and believe that there is hope in beating and surviving NEUROBLASTOMA.

HEALTH

I am doing ok - and lots better than a lot of other sick kids but I still have my problems and worries about my illness. The headaches are the worst, I just wish they would go away for good, they have been going on far too long and still the doctors don't know why I get them - but as I said further down the page darsly has her suspicions as to why and believes it is the spot on my spine at T-11 - T12 pushing on a nerve which is giving me the headaches (maybe darsly should be a doctor). This question was asked to a doctor not long back and we were told it is not possible - well we know other wise it is possible, and very much so possible. My tests still show the spot sitting on T-11 T12 of my spinal cord and it is a worry and if it is causing other problems such as my headaches and leg pain then darsly wants some answers but we are not getting them because we have to wait so long to see a specialist, why do we have to wait so long, that is just the way it is here. Anyway , darsly is still pushing to have the cause of these headaches known and the leg pain as well as the nose bleeds, WHEN a child has a medical history and one of battlin cancer and not just a little cancer but a very aggressive cancer NEUROBLASTOMA you would think the doctors would have concerns and would do their utmost to find the cause of others problems, but they don't - and it is frustrating, and more so for me because I am the one who has to put up with the pain - the head pain, the nosebleeds, the leg pain. Is it going to go away, is it going to get worse - well it aint going away and it has been getting worse so I think it is time we got some answers.

WHAT'S COMING UP

Lots of things are coming up - lot's of CAMP QUALITY fun - many Christmas parties with all the Cancer support places I am with - this year non of them clash so I will be able to go to all of them which is great, each year I can usually only go to one because they they have then on the same day, but I get to go to three this year (WHAT FUN). I also have some Triathlons coming up, of course I do those to raise money for NEUROBLASTOMA RESEARCH and also raise money for CAMP QUALITY, so I have been trying to put in a bit of training for those. I do what I can, when I can during the year to raise as much money as I can in any way I can because I want to find a CURE for NEUROBLASTOMA and also I like to give back to the cancer charities who do so much for me - so I have lots on my schedule seeing the weather here in Australia is getting warmer the Triathlon season has started so you will be hearing lots about the events I will be participating in and also the runs I will be doing.

THIS WEEK GONE ON GRADUATION CAMP

Monday 9th to Friday 13th - I am going on my GRADUATION CAMP with School. All the year 6 students are heading off to Phillip Island for a week of fun and it looks like the weather is going to be great during the week for us. All packed and ready to go - I have a niggly pain in my head but it is not going to stop me from going on camp so off to school darsly took me as the buses leave at 8.30 am this morning - so I will see you all when I return and let you all know about my week away after I get home. When I get home hopefully I will have some photo's to show you (that is if I remember to take some photo's - we have lots of activities during the week. I know I am going to miss darsly mum a lot - wow this is the second week away in just a fortnight - I want to go on the camp but it is a long time not seeing darlsy mum again and I know she misses me heaps when I got away and she worries a lot. Hopefully the week will go really quickly and I will be home in no time.Darlsy will take a photo of me getting on the bus and put it up. (I am not letting this niggly headache going to wreck my camp). Well must go guys - gotta go catch the BUS - COACH which is taking us to camp - please pray I don't get any headaches or nosebleeds because last week was a real bad week for those headaches. See you all when I get home on Friday.

THE WEEKEND

Sunday 8th October - Today is the BIG RACE - as you know I just love V8 Supercars and BATHURST is the biggest V8 Supercar race in Australia. I have never been to Bathurst because is is a long way from us but hopefully one day I will get to go. It is a very special race this weekend, in memory of PETER BROCK the race driver who died in a bad race crash a few weeks ago and my mate. Peter was called the king of the mountain because he won Bathurst 9 times and no one has ever done that before. A special memorial trophy was made for today's race to be presented to the winner at the end of the day. The race is 161 laps around Bathust and that is a very long way and it takes all day. The race was finally won (after lots of big accidents) and was won by my FAV V8 driver CRAIG LOWNDES. News Flash The V8 driver who had a terrible crash at the track yesterday died tonight - he had terrible injuries (another special V8 driver gone). 7pm I started to get a real bad headache, they just come on for no reason, I was just sitting on the couch and this pain starts in my head - I was not feeling very well at all. I hope it goes away because I don't' want to miss my big camp away tomorrow. Darlsy said I should go to bed and lay down and get a good nights sleep and hopefully it will be gone by the morning.

Me with Craig Lowndes (Winner of Bathurst)

Saturday 7th October - It was a beautiful day, darsly let me go down to the indoor pool for a swim, I stayed there for a few hours. Then Darsly took me to the Music store - I want to learn to play the DRUMS, I really love the drums and would love a set of DRUMS. This big music store has a big section for learning instruments. The guys at the store were great and they let me have a go at the drums (so cool), see the BLUE drums they are the one's I would like to have, darsly said maybe Santa might bring them for Christmas (I really do hope so) I know they are expensive and hope that I might be lucky enough to get the DRUM KIT. One of the guys showed me a few things and they said I could could come back any time and have a go on the drums. Darsly booked me in for some drums lessons and not just with a normal person who plays drums - my lessons are with one of the top drummers in Australia - he is the drummer for one of our top bands here in Australia (how cool is that) I will tell you more about that band another time. I have to wait one week to have my first lesson because I am going away on camp for a week, but when I come back my lesson will be on a Thursday night at 6pm (I can't wait) I am so excited about learning the drums, I have wanted to learn the drums for a long time. I did not want to leave the music store but we had to go. 1pm We have the biggest V8 Supercar race here in Australia this weekend, it is BATHURST 1000 and it is a huge race and I watched it on the tv today, it was just the qualifying for Sunday but very exciting. (Two drivers) had a really bad accident and they are in hospital in a critical condition with bad head injuries and other injuries (it was an horrific accident) and I hope the drivers will pull through but their injuries are life threatening. 3pm I went for a ride on my bike and my tire popped, so that was it for my ride. Darsly will get the tire fixed during the week, I think I ran over something because there is a split in the tire. 4pm My mate Mick came around and he had his bike and I had to use my scooter and we went to the park for a while then came home and played in my toy room and then had go on the playstation which I don't use that much but darsly said we could have go for a little while. 6pm Mick had to go home and I went up to the school with him and we got bullied by some kids up there - one of them punched Mick in his back and I called Darsly because I had my phone with me and of course Darsly stormed up to the school and the bully kids just ran as soon as they saw darsly. They are kids from school and they always bully us but I am not afraid of they. Mick was ok, he did not get hurt but darsly rang his mum a let her know that Mick was hit by these kids. I came back home with darsly and the rest of the night was just spent relaxing and getting some stuff together for my camp.

JAY and the DRUMS (he dreams of having)

THE WEEK JUST PAST

Monday 2nd October - My first day back at School after two weeks of holiday. We are getting great hot weather here in Australia now so that means we now have to wear our hats at School. We are not aloud out to play if we do not have our hat's (that's the rule). The first day of School was ok, and we have lots of things planned for the last term of the year. It was great to see my mates (the one's I did not get to see over the holidays). All we did today at School was go over our schedule for this term - and the rules. Because we are all Graduating we have strict rules to follow it is hard to explain but we have to sign a contract regarding behavior and if we are given warnings or time outs or re -thinks and we accumulate 3 of them during the term then we are not aloud to go on any of the graducation excusions and things. It is not good that school comes to the point where you have to sign a contract and it is all because of the BULLIES in the school and the one's who always miss behave. It was a long day and I came home with bad headaches, it started earlier in the day and did not go away.

Tuesday 3rd October - It was Fitness day at school, well the whole term is Fitness theme and today I played GOLF, I love playing golf, I have my own golf clubs but we used the ones at School. We also got to do other sports such as JUMP ROPE, ball games. During day a got a real bad HEADACHE, I sat down for a while, it sought of eased up and I stayed at school. We talked about our up and coming School Graduation Camp which is next week - I go away for one week (that will be lots of fun). I gave up my lunch time (as I do most day's) to help the teachers and the Principal with things around the school - I sometimes rather do things for the teacher than be out in the hot sun - because my head hurts more being out in the sun. After school my mate MICK came around for a little while to play but I got another real bad headache and I could not play any more so he went home. I tried to do some of my homework but I was not feeling the best and my head was hurting a lot so I went and lay down. Darsly gave me some medicine to help with my headache. Darlsy mums back is still very sore - sometimes she says I wonder if it was a good idea having the SPINAL surgery because I don't feel any better, my back is in so much pain all the time. I hope Darsly 's back get better, she is not aloud to go to work and it is making life very hard because she is not aloud to go to work and she worries a lot. Darsly is still waiting on the when the next APPOINTMENT with the Surgeon is but she has not got it in the mail yet - it is suppose to be around November but not sure what date, so she has to wait until then to have another scan - and find out what the Surgeon says about her back and of course she is going to push him to say yes you can go to work, but she dosn't think he will say those words.

Wednesday 4th October - HOT DAY TODAY - YIPPPPPPPEEEE 30 Degrees Celsius today and it is a Total Fire Ban in Victoria today - because we have had the driest Winter all the land is very Dry and Fire can start at any time - Fires are bad here down under. I got up early and got ready for School - the headache had gone and hopefully I wont get one today. Best I stay indoors today seeing it is going to be so hot. 3.30pm I made it through the day , it was a very hot day at school but it was not headache free. I got home and just wanted to lay down - blasted headaches, I was not feeling good at all when I got home from school. Darlsy is fed up the headaches aswell and has put her foot down with the doctors - surely they can find out why I get the headaches - if they are not migrain then wheat are they - the doctors say I don't have migrain, then there has to be a reason - you don't just get headaches for no reason. Darlsy is going to go get my eyes checked, but I do have good eye site so we don't think it is that. Darlsy has her own thoughts on what it might be and I bet she is right, lets see if any doctors can figure it out.

Thursday 5th October - Not feeling that good today so I stayed home. Can't concentrate at school when I have a headache, and all the noise of kids yelling and screaming and loud teachers don't make it any better, so Darlsy let me stay home today. I stayed in bed and had a big sleep, that makes my head feel a bit better, it was not a good day out side anyway - not like yesterday's big hot day, can you believe it rained today. Darlsy's back is very sore today, she said she feels really stiff and it is hard to bend to do things and it huts a lot, so both of us are no use to each other (lol) me with my continual headaches and darsly with her bad back.

JAY (not well - bad headaches)

Friday 6th October - I wanted to go to school today because we have the inter school sports away at another school and did not want to let my team down. I was feeling a bit better so I said to Darlsy I am going to school. We left on the bus at 9am to the Berwick School which is about a 15 minute drive, we had lots of different sports we doing and I was in the VOLLEYBALL team, there was also, football and soccer and netball. 12 noon WE won - we all did well in all the events and beat the other school, we came back to school very excited - and NO headache today which I was very glad about. 3.30pm My teacher is not a very nice teacher and have had lots of problems during the year, all the kids in my class have - to cut it short - she should not be teaching kids, she yells a lot, she is nasty, mean, she locks us in the room she puts paper over the windows so we can't see and lots more. Anyway my darsly has been to the principal about her many times this year so has many of the other parents and today was the last straw - I can't go into details but my darsly was mad and my teacher was crazy and my darsly let her know that and went to the principal and demanded I go into another teachers class the the last term, I feel sorry for all the kids in my class because she treats us all so badly. Darlsy would not leave the principals office until the principal did something. He agreed with darsly that the teacher did something she should not have done and will be reprimanded for it. I have never had a bad teacher ever at the school I go to but this teacher is the worst and none of us kids in the class like her. She is so mean and nasty and should not be near kids.

My dog Snowflake - She deserves a mention today - she is my little mate and we do everything together. She is such a sweet little dog and she is my best medicine. I don't know what I would do with out my little Snowflake, when I am sick she knows I am sick and she sits on my bed next to me waiting for me to get better, she will not leave until I get better (what a great little dog). If you don't have a dog and you have a sick child I recommend you get a little dog because they are better medicine than what doctors like to hand out. I feel so much happier when I have my little Snowflake around me. When I am in the hospital not having Snowflake is sad, but as soon as I get home I always feel lots better because Snowflake is there to greet me and be with me. Snowflake is my mate for life and has had a lot to do with me staying out of hospital (NATURAL MEDICINE) a best friend.

MY DOG SNOWFLAKE

MY FRIENDS

Sorry I will not be around this week to visit you all - but I have asked my darsly mum to drop in on you all (well - as many as she can). I think of you all even though I have not been around to visit lately. I have not forgotten any of you - you are all in my thoughts each and every day and I have a huge list of friends to visit. To my little mate Zac here in Australia, good on you mate - Zac had a brain surgery on the 7th October to remove a tumor, the little trooper not only pulled through ok, but he was wide eyed and talking away straight after his surgery and he can see better than when he went into srugery - they got all the tumor how good is that. Zac had trouble seeing out of one eye, but he can see better than he ever has, that is such a great news story - good on you Zac. My other little friend who is an NB friend I have known for a very long time, her name is Megan and she had spinal surgery on 6th October, you see the Neuroblastoma left her in a wheel chair and a bit of trouble with her spine so she needed an operation and she has pulled through the surgery and is doing ok, but in a lot of pain - darsly knows all about pain with spinal surgery and we really know that it must be hard for little Megan, but you know what, Megan is so strong and so tough and we know she will fight on just like she did to beat Neuroblastoma.

I just want to say a big G'day to some friends before I go off to camp: Colette - Lenzie - Patty - Zac - Karen - Kira - Julianne - Brenda - Heather - Stacy - Alex - Riley - Kassidy - Critter - Nic - Zoie - Ian - Summer - there are so many of my friends and sorry if I missed you off today but I do think of you all. Remember to always stay strong and positive no matter how tough things get and keep a Big Smile on the DIle (Face) always.

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