JAY'S (Smile Mail)P.O. BOX 2075
Fountain Gate 3805
Melbourne - Victoria - Australia
(I love receiving nice mail - thank you everyone for caring)
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G'DAY IT'S JAY
"LEARN FROM YESTERDAY" - LIVE FOR TODAY" -"HOPE FOR TOMORROW"
Belinda Emmett dies in Sydney
11th Day of November Belinda Emmett passed away after her long battle with breast cancer diagnosed in 1998 at the age of 24 and then diagnosed with secondary bone cancer - Belinda was a very well know Actor here in Australia and was married to the very funny comedian Rove McManus who has his own night time show on TV here in Australia. Belinda was a beautiful person inside and out and even in battling her own cancer took the time to visit sick cancer kids like me. Taken too young in life age only 32 you will be missed Belinda, you were the love of Roves life and he must be shattered - you put up one of the bravest battles ever - you are now the most beautiful ^ANGEL^ and we will miss you. Please click the heading above to read the full story.
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G'day everyone - all my wonderful supporters and great friends, I am so excited about winning an AWARD, I have never won anything before and this is such a special honor and a very special award. I did not know I had won it until my darsly mum told me and I could not believe it - I am no one special I said, I just do what I do because I want to and I can there is nothing special about that. Darsly said - you are more special than you will ever know sweet boy. Being recognized for helping others, for raising awareness of Neuroblastoma and for battling cancer is wonderful and more so knowing it was Australians who judged me to be the winner of the award. Wish I could tell you more about it - but I do not receive the award until Wednesday 22nd November in Sydney. How exciting I get to go on a plane to Sydney, I have never been to Sydney before and I am so excited about it. The award is announced on the 22nd November so that is why I can't really tell (I want to). I will let you all know what it is the day before I leave for Sydney. On Saturday the 4th November I did a photo shoot for a magazine, this coincides with the Award ceremony and it comes out on the 22nd November and then another story out the week after the ceremony. I will be making sure I get the word across about Neuroblastoma here in Australia and making sure the people who should be listening will be listening - the more we speak up about Neuroblastoma the more people will take notice. I am very grateful for the Award I am going to receive, but I still say I am not that special, I have been given a second chance at life to make a difference in other peoples lives so that's all I am doing trying to make a difference in the world of Neuroblastoma and doing my part in trying to raise awareness and raising money for research (not a hard thing to do) any one can do it.
**Going to Sydney**
**Depart Melbourne 21st November - get picked up at Sydney Airport
**2 nights accommodation at Medina Grand Harbourside Hotel Apartments in Sydney
**Sydney Attractions passes -
**Sydney Aquarium - Sydney Wildlife World - Sydney Tower - Oz Trek
**Private guided tour of Sydney Aquarium
**Darling Harbour attractions
**And lots more
**Return home Thursday 23rd November
So I am very excited and can't wait for the days to count down.
The big race: - On Tuesday 7th November it was a holiday for the nation of Aussies because it was the running of the MELBOURNE CUP - that is a horse race which stops our nation so we all have a holiday - the horse that won was: DELTA BLUES - POP ROCK was second and MATBE BETTER was third - it was a bit of a chilly day here in Melbourne today but everyone had a great day off work and school.
Me - My bucket - My headaches make me sick
How have I been you all ask - I have not been that good as you all know the past few weeks, but this past week was not too bad I suppose compared the previous weeks. The headaches have been real bad, I try not to let them get to me but they are getting worse and really starting to annoy me big time. Darsly took me to have a special scan and hopefully this doctor will be able to help me get rid of the headaches. The specialist was really nice and he really wants to help and really cares (not like some other doctors) who have just not tried to find the cause of my headaches. The scan did not hurt - it scans my spine and comes up on a computer and it tells where the problems are - because of my Neuroblastoma the results are going to be discussed with a Neurological Specialist to see what treatment is involed in getting on top of these headaches. I go for an appointment on Wednesday 8th November. Darsly said hopefully we can get some answers and it looks like this doctor really cares about finding a cause and not just treating the symptoms and the pain. Finding the cause is what needs to be done - most doctors just say OH take this medicine and that pain will go away, but taking medicine doesn't find the cause of the problem - so lets hope now we find why I am getting the headaches so we can stomped on them good and proper just like the Neuroblastoma. I have also bad leg pains and have had lots of stomach aches this week - of course darsly looks after me and she hates it when I am not well (she worries a lot) but I am use to all the ups and downs in my life with illness and I know darsly does everything she can to make sure I am well. Sometimes I do say why am I always sick, I am sick of being sick, but then I give myself a nudge and say - there are worse off than me and I try not to complain. My wish is to never see a hospital or a doctor again in my life - but that is a very big wish and I really don't think that is going to happen, but I am going to wish for a better year in 2007 because 2006 has not been a very good one at all - me sick - darsly sick with her back surgery, it has been a very difficult year.
Below are some photo's I put together - not all (I have millions) but some.
Let me tell you about Neuroblastoma
"NEUROBLASTOMA" it is a form of cancer that occurs in infants and young children (well - that's what they say) - it is rarely found in children older that 10years (again that is what they say but not entirely true). The cells of this cancer usually resemble very primitive developing nerve cells found in an embryo or fetus. The term NEURO indicates NERVES, while BLASTOMA refers to a cancer that affects immature or developing cells. Anything with the the word OMA on the end of it means TUMOR. Neurons (nerve cells) are the main component of the brain and spinal cord and of the nerves that connect them to the rest of the body. These cells are essential for thinking, sensation, and movement. There is a part of the nervous system that we are rarely aware of called the autonomic nervous system which controls involuntary body functions such as heart rate, blood pressure, and digestion. The sympathetic nervous system is a part of the autonomic nervous system and it includes:
*Nerve fibers that run alongside the spinal cord
*Clusters of nerve cells called ganglia at certain points along the path of the nerve fibers
*Nerve like cells found in the medulla of the adrenal glands. The adrenal are triangular shaped - glands located above the kidneys. The hormone adrenaline comes from the cells in the adrenal - gland.
Most Neuroblastomas (about two thirds) start in the abdomen. About one third of Neuroblastomas start in the adrenal glands and another third begin in the sympathetic nervous system ganglia of the abdomen. The rest start in sympathetic ganglia of thechest or neck or in the pelvis. Some can start in the spinal cord. (My Neuroblastoma they say started in my chest although it was hard to find exactly where it started due to it invading my entire body and wrapping itself around my spinal cord many times. It is although very rare that Neuroblastoma has spread so extensibely by the time it is found that doctors are unable to determine exactly where it started. There is a benign tumor called ganglioneuroma which is composed of mature ganglion and nerve sheaths that do not continue to grow and there are Ganglioneuroblastoma which is a tumor that has both malignant and benign parts, it contains neruoblasts (immature nerve cells) that can grow and spread abnormally, as well as areas of benign tissue that are similar to ganglioneuroma. I had all of these (Neuroblastoma - Ganglioneuroblastoma and Ganglioneuroma) so I consider myself a very lucky boy to be alive. Ganglioneuromas are usually removed by surgery and carefully examined under a microscope to be certain they do not have areas of ganglioneuroblastoma. If the final diagnosis is ganlioneuroma no additional treatment is needed. In contrast ganglioneuroblastomas are treated the same as neuroblastomas - so I got the full treatment of very aggressive chemotherapy. I was riddled with Neuroblastoma, not as much ganglioneuroblastoma as the Neuroblastoma.
Neuroblastoma is a unique cancer in many ways. It is one of the few cancers in children that release hormones that can cause strange changes in the body such as constant diarrhea. It can also cause changes in functions of the brain, such as opsoclonus (rotary movements of the eye) and myoclonus (spastic jerks of the muscles). These changes are called paraneoplastic syndromes. The tumor itself can behave strangely. Sometimes the cells die without any cause and the tumor disappears. This is part of a normal process known as programmed cell death (apoptosis) the normal process that occurs when cells die. This tumor disappearance is much more common in very young infants than in older children. Another behavior that is unusual for childhood tumors is that the cells sometimes mature spontaneiously to normal ganglion cells and stop dividing. This causes the tumor to become a ganglioneuroma which is benign.
I had it all - but the worst being Neuroblastoma the big bad monster - having all three that is why it was so hard to give me a diagnosis a the time but eventually was diagnosed Neuroblastoma - by this time it had invaded my entire body and started growing out of my back, the ony reason I was eventually diagnosed was because my darsly mum kept demanding someone look at the bump on my back. Neuroblastoma doesn't usually show itself - it is a silent killer but in my case and very rare case only because my tumor had no where else to go in my body it started to come out of my back and growing very quickly out of my back. One day the little bump on my back was only the size of an infants little finger nail but within ony an hour that bump had grown 5 times the size and kept growing but still no one would look at it. It took my darsly to screen down the hospital to finally have someone do a biopsy otherwise if it was not for darsly I would have died. Darsly always says to people - you know your won child the best and if you think something is not right then you must keep pushing and if you don't get an answer then go elsewhere until you do. I would not be here today if my darsly had of listened to all the doctors saying she was a neurotic mother and saying I just had a little cold. Darsly new I did not have a little cold and if she had not have kept of pushing and demanding then I would not be here today to tell my story and to help other families and children battling Neuroblastoma.
Diagnosis of Neuroblastoma can be complicated. It has been called the Great Masquerader because its symptoms mimic so many other diseases. Even a pathological study (biopsy) might reveal cells that can resemble other small round blue tumor cells, like lymphomas and rhabdomyosarcomas. Only a pathologist familiar with neuroblastoma can distinguish the difference (and Neuroblastoma is rare). Other characteristics of the suspected neuroblastoma cells can be studied by immunohistochemistry and electron micropscopy. In about 90% of cases of neuroblastoma elevated levels of catecholomines or its metabolites are found in the urine or blood. Catecholoamines and its metabolites include dopamine, homovanillic acid (HVA) and or vanillylmandelic acid (VMA). Another way to detect Neuroblastoma is the MIBG scan but it doesn't diagnose the disease in 100% of the cases. My levels of catecholomines were very high elevated - so this was another indicator to my final diagnosis, but was not the only test, I had many and when I say many tests I am sure only Neuroblastoma families understand what I am talking about. From the time of diagnosis life as it was changes for ever and it is never the same again - living in the world of cancer can be a good thing though - look what it has done for me - it has given me the chance to help others - if I had not been diagnosed with cancer I don't know where my life would have taken me but that is then and this is now and I am here and have been given another chance at life so I can help others and give them hope that you can survive neuroblastoma no matter what stage you have.
NEUROBASTOMA is an aggressive cancer - it grows very quickly and is a silent killer so if you think at all there is something no quite right with your child, don't push it aside, don't let the doctors tell you there is nothing wrong, your instincts as a parent is usually right. I hate to think that if darsly had listened to those doctors - basically I would not be here, I was on deaths door and still doctors were saying there was nothing wrong with me - so please follow your instincts, you know your child the best, if you don't like something a doctor says, go to another and another until you get the answers. I don't want Neuroblastoma to take away any more of my friends - we need to all pull together and support each other and do our best to get a cure as soon as possible. Come on Neuroblastoma families we are all in the same boat here, we all go through the same thing, we all need to support one another (unfortunately darsly and I never got much support) but it doesn't mean we can't support others and that is what we do - we want to get the message out there to all the high authories about Neuroblastoma and what it is doing to our kids - I was left on this earth for a reason, I have a second chance, a chance not many Neuroblastoma kids get, I am doing my best to get the message out there, but I can't do it on my own. There are becoming more and more kids in Australia being diagnosed with this horrible monster - it should not be - we need to stomp on this monster now and the only way we can do that is by donating to Neuroblastoma Research, byeing my T-Shirts and wristbands, all proceeds go to finding a cure for Neuroblastoma. If you want any information about my T - Shirts and wristbands please place a private message in my guestbook and I will send you details. I thank all the people who have bought my T-Shirts and Wristbands, the more I sell the more money that goes to Neuroblastoma Research and to saving a child's life just like me.
I have so much more to tell about Neuroblastoma, maybe each journal I will tell a few more things about it. In telling about Neuroblatoma it may save a life, the sooner you can diagnose neuroblastoma the better - I don't want people to go through what my darsly had to go through to get me diagnosed, if doctors had of listened to my darsly from the beginning then my tumor would not have grown massively through out my body, if she had been listened to from the beginning I may not have had to go through what I have over the years. So I am hoping by telling my story, by letting you know what Neuroblastoma is it may help save a child today from going through the hell of living with Neuroblstoma.
I share my story - my life with everyone around the world in hope it helps others - sharing a story of hope is what everyone should do - it is not a competion to who has the best story or who can get the most visitors - my site is not about that - my site is about giving hope to others and sharing what has been a very difficult life - a life I don't wish on anyone - we should all be sticking together out there - my site is about Neuroblastoma and helping others - I can't help everyone but I sure do support everyone and do everything I can to get the awarness out there - if I only help save one life then I know I have done a good thing.
Down at the yacht club at Mornington On one day last week when I felt a little better we went out - I had not been out of the house for a while and neither had darsly and we both just wanted to get out. We went for a drive down to Mornington which is about a 45 minute drive for us from our house. It is right on the beach and we walked along to the yacht club and there were some really big yachts waiting to go out for a race. The day was not the hottest day, it was very cold but we had a good time. I had my scooter that is why I have my helmet on. We got some lunch and an ice cream, it was a good day out.
At my drum lessons (love the drums)
My drum lessons are going really great - my teacher says I pick it up real quick and he is very proud of me. Even when I have had the worse headache I have gone to drum lessons, I don't want to miss a lesson. These are the drums in the music studio I go to for my lessons and Andy my teacher gives me homework to do. I don't have any drums at home so I have to practice on four pillows. I am hoping to get a drum kit for Christmas, but I know it has been a hard darsly not being able to work and we are doing it very tough right now - I do understand if darsly can't get me one but I really do hope and wish I will get a drum kit.
My wonderful teacher Mr. Gouge
School has been good, this is my new teacher (oh yes) this is the teacher I wanted at the beginning of the year. My other teacher was mean so my darsly had me transferred to Mr. Gouge and I am much happier, he is such a nice teacher and easy to talk to. At school we are making a scrap book of all the years we have been at school this is for our graduation which is coming up real soon. Darsly went through all the boxes to get out things for my scap book from Prep to year 6, it is fun putting it together and looking over all the things we did at Maramba where I go. I will miss Maramba, I go to High School in 2007, but I will still see Maramba because I will pass it on my way to my new school which is only a 5 minute walk away. Maramba has been the best school ever and I can't believe it is nearly all over and I graduate in just a few weeks time.
I have NB so do lots of my friends
*Colette* - *Megan* - *Tyler* - *Olivier* - *Tanner* - *Angela* - *Thane* - *Kassidy* - *Lenzie* - *Ryan* - *Morgan* - *McKenzie* - *Cole* - *Preston* - *Grace* - *Weston* I could go on and on (this is wrong that so many kids have NB) these are just a few of my wonderful friends who are battling NB - I do my best to visit each and every one of them and cheer them on and let them know that there is hope, you can beat Neuroblastoma. What disturbs me more is that here in Australia there are becoming more and more kids being diagnosed with Neuroblastoma - I have some very special wonderful little friends here in Australia fighting the fight - I have been doing what I can to cheer up the family and giving them hope that everything will be ok - I would love it if you would visit my two very special NB friends here in Australia and send them a little message - I know that when I get messages they really cheer me up so much. Please don't forget to visit my guestbook first and leave me a message then got visit my special friends who are dear to me, my special little mate Tyler is a fighter and his family have been wonderful to me, I visit him everyday and will catch up with you all when I come to SYDNEY which will be great, we are all on a mission and that is to find a cure for Neuroblatoma. My other special Aussie friend is Olivia . Don't' forget we may live way down under in the land called Australia but doesn't matter where in world you live we all have something in common - I can get to know my wonderful Aussie friends and meet up with them, it is wonderful to be able to do that, but I can't meet up with my American NB friends which is sometimes very frustrating because all I can do from here is give them messages of hope and courage and cheer them on -we may be worlds apart but Neuroblastoma has bonded us all together as one big family and we need to support one another - some are doing it a bit tougher but that doesn't mean you leave out the ones who are feeling a bit better, we all have our good and bad days - I certainly do, I have been battling this monster and I love to get messages when I am not feeling the best but also love it when I get messages when I feel a bit better and most of all I love all the messages I get to thank me - people from all over the world, families of other NB kids thank me for helping them - all I can say is it doesn't take much at all to send an encouraging message and to let people know you care. THANK YOU everyone for caring about me, it not only makes me feel good, it cheers up darsly aswell - going through something like Neuroblastoma on our own has been difficult but it has been rewarding knowing I have done a good thing in helping others. If we all took just a little moment out of our lives to show someone you care that is rewarding in itself. Well I must go - please don't forget to sign my guestbook please - lots of people just pass by - it doesn't take much to leave a message and it shows me that you have taken the time to visit - THANK YOU. I go on and on and don't know when to stop sometimes - I just have so much to say all the time (LOL)
Remember to keep BIG SMILES ON THE DILES (faces) and NEVER GIVE UP
JAY
www.jaysjourney.org
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First I would love to thank my wonderful Darsly mum - without her I would not be here today, she has been my strength and has fought when others would not - she did it all on her own - we both did it on our own, we stuck together through the good and the bad times and we came out of that tunnel winners, without my darsly mum I don't think I would be the person I am today. Thank you darsly mum "I love you so very much", things are tough for us but we have the gift of love that pulls us through each time. You are the best mum in the world, you have never left my side and you have always stuck up for what you believe is right and that was to keep me alive. 
Tuesday 21st We arrived in Sydney after a very long wait in Melbourne to catch the plane. There was a delay of one half hours so we arrived in Sydney later that expected. We were met at the airport by a Limo driver and he took us to our Motel on Darling Harbour (wow how beautiful it was). We were tired but anxious to get out and see some sights seeing we had some free time. It was very hot in Sydney (and I mean hot). Darlsy mum and I walked along Darling Harbour looking at all the wonderful sights - so many people around and so much to see. The sights of Sydney were wonderful and of course we took lots of photos. At 6pm we had to meet down in the restaurant with the Marketing manager of Take 5 magazine to go over details of Wednesday Award ceremony and that is when I was told the best thing ever. I was told that SHANNON NOLL my all time hero - role model - idol was going to be my BUDDY for the enrire day. Shannon Noll is the one who sings the song on my website and I could not believe he was going to be my buddy for the day. Last week Shannon Signed my guestbook, we did not know if it was really him who did it but when I met Shannon he assured me that he did sign my guestbook and I was so happy. To know Shannon was going to be my buddy for the day it was very hard to sleep, I was just thinking of it so much and could not believe he wanted to spend the day with me.
Wednesday continued: Also at the awards Ceremony were other celebrities and they were TV funniest Home Video Host Toni Pearen and Lara Bingle and Michael O'Laughlin form the Sydney Swans and Bianca Dye from NOVA which is a radio station in Sydney..jpg)
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