Jay crashed his bike

Jay's mail bag

P.O. Box 2075

Fountain Gate 3805

Melbourne-Victoria-Australia

G'DAY it's JAY
JAY & MARCOS ABROSE (V8 Supercar driver)
JAY & RUSSEL INGALL (V8 Supercar Driver)
JAY (Go-Kart)
JAY (His fav Car)
JAY (Stupid)

G'DAY it's JAY & DARLSY MUM*****THE SURVIVOR MOVIE (Who I am - A true Survivor) *****"STEVE IRWIN" 1962 - 20064TH SEPT : NEWS FLASH - VERY SAD NEWS IN AUSTRALIA TODAY (THE CROCODILE HUNTER) STEVE IRWIN - DIED TODAY - HE WAS SPEARED IN THE HEART BY A DEADLY STINGRAY - A WONDERFUL AUSTRALIAN - A WONDERFUL MAN GONE - OUR THOUGHTS ARE WITH HIS BEAUTIFUL CHILDREN AND WIFE. Jay is devistated - we both are and will miss you MATE

JAY CRASHED

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This is Jay's darsly mum updating you on what the little man did to himself on Monday 28th. Bike crashes are very familiar to me with Jay. Jay dosn't just crash he always seems to crash and burn and damage himself badly. Monday about 5pm he went off riding with his mate Mick at the school, then Mick had to go home and Jay was on his way home but luckily still in the school grounds. He was just riding along when the brakes and steering locked up and a spoke broke and threw him over the handle bars face first into the conrete. Lucky Jay had his helmet on because he bashed his head into the conrete (I dread the thought) of what could have happened if he had not had the helmet on. Jay never does things by halves he smashed himself up pretty bad, blood everywhere and crying but the trooper and determined kid he is he managed somehow to drag the bike home and it is a very heavy bike - instead of calling me on his mobile phone he dragged the bike home which is normally about a 3 minute walk from our house and then a knock at the door, I open the door and there he stands with blood pouring from his chin, a smashed shoulder and a destroyed $500 bike. I put up a photo of Jay with the patch on his chin and you may see the scar on his right eye - well that is from the previous bike crash which landed him unconscious, nearly lost his eye, 17 stitches and nearly brain damage. This time he had 8 stiches in the chin and hopefully the shoulder has no permanent damage BOYS WILL BE BOYS. Jay is very sore and has yet another scar to add to all the rest - but he is alive and I am so happy it was not a car which run him over. I have taken Jays bike back to the place we bought it and told them what happened and they have admitted it is a manufacturing fault - I said OH MY GOD, my son could have been killed - if he was riding on the road and the bile locked up as it did and he flew over the bars as he did, he could have been run over and killed by a car - they were very apologetic and I told them I was not paying for the bike to be repaired. Jay is a tough strong boy and he will bounce back just as he always does.

TUESDAY 29th AUGUST

- Jay was suppose to have his Athletics Carnival today but he had to pull out because of the injuries to his arm and chin, so it was a day at home because he was not feeling well at all. He bashed his head very hard on the ground, even though he had the helmet on it caused him to have servere headache.

WEDNESDAY 30TH AUGUST

Jay is home again today, not feeling the best and feeling a bit sad, sore and upset about his injuries and his bike . I would rather him stay home and recover properly than send him off to school and get teased and bullied by other kids who saw him crash and did not help him, they just stood there and laughed at him. So he is home for the rest of the week because we have a very busy week indeed.

THE REST OF THE WEEK FOR JAY

Well something very EXCITING is instore for Jay on THURSDAY 31st AUGUST in the afternoon, which we will give you a hint and that is why he put up the photo's of the V8 SUPERCAR DRIVERS. Well............OK we will tell. The V8 SUPERCAR DRIVERS INVITED JAY AS SPECIAL VIP GUEST to a special function on Thursday and also invited him as VIP GUEST this weekend to the BIG RACE - YEP the V8 Supercars are in our home town this weekend 1st to the 3rd September and we live just 10 minutes from the track and JAY has been waiting for this weekend fo a year. So you will not be hearing from us from Thursday because JAY will be hanging out with the V8 SUPERCAR DRIVERS ALL WEEKEND - it was good timing, it might cheer Jay up and he will forget about his BIKE CRASH.

23rd to 27th BEFORE THE CRASH

WEDNESDAY 23rd AUGUST

What a day - a tiring day - Jay had bad HEADACHES all night, I had to stay up all night with him, I gave him medicine to ease the pain and finally I got some sleep, but them my ALARM went off at 7am and time to get up for another big day for Jay at school. He had rehearsals all day for CHARLIE AND THE CHOCOLATE FACTORY Also had CROSS COUNTRY training and his legs were aching bad all day .Because he had Cross Country training he missed one of the rehearsals 3.30pm the teachers gave the kids a song they are suppose to learn by 6.30pm. Jay came home and just sang and sang around the house until he new it. 6.15pm I took Jay back to school to perform his first production LIVE. 9.30pm I go to pick Jay up - he said that's one down and two to go

NEWS DAY

- today was the day his friend from the V8 Supercars contacted us and invited Jay and myself to be special VIP guests with all the V8 Supercar drivers on THursday 31st August. Jay is so excited, he gets to meet up with all is V8 Supercar mates and we were also given VIP passes to the big race (so COOL) Jay said. Jay absolutely loves the V8 SUPERCARS in Australia and of course the NASCARS in America - he said to me atleast I get to go to the V8 SUPERCARS because I will never get to go and see a NASCAR race.

THURSDAY 24th AUGUST

UP time after a very late night and another 12 hour day for Jay at school. Tonight is the night I get to see Jay perform and I am looking forward to it. Unfortunately we are not aloud to take photo's because the school they are recording the production and once they have put it together we then have to buy a DVD of the show.

It is time to go and watch the performance and Jay is very excited I am coming along to see him but he is also a bit nervous. The production went for two and a half hours and Jay did a brillian job - what a great reporter he is and he said all his words to perfection. It was another long night and we did not get home until 10.30pm - we were both really hungry and got something to eat and then Jay went off to bed to try and get some good sleep before he has to get up for another 12 hour day.

FRIDAY 25TH AUGUST

Up for school again and another big big day. Jay had more rehearsals and also had Athletics training. NOT A GOOD DAY - Jay was PUNCHED IN THE FACE in the cheek and it was very

swollen and bruised - yep he got puched by that rotter BULLY again - of course I was not happy and stormed into the Principals office (I cannot tell you the words which came out of my mounth but I was mad). Jay came home for a quick dinner then it was back to school for the last performance. It went well but all the kids were totally EXHAUSTED . Jay got through the front door and straight into bed because his legs were hurting a lot, and had been hurting all day, so I gave him some medicine and he fell straight to sleep.

SAT 26th to SUN 27th AUGUST

We just wanted to relax this weekend and do absolutely nothing - and that is exactly what we did NOTHING it was great doing nothing, because the last couple of weekends have been very exhausting and also the week for Jay was exhausting, so we just stayed home and veged out because we have a HUGE week as of Thursday 31st August.

MONDAY 28th AUGUST

Graduation Photo's were taken at school today - all the year 6 students who are graduating at the end of the year - of course JAY looked great and how lucky it was the photo's were today because after school he CRASHED the bike and I am sure the look would not have been as glamorous.

SCHEDULE

THURSDAY 31st AUGUST 10.30AM

We first have to go to the ALFRED HOSPITAL from my CT SCAN of my back - my back the past 2 weeks has been very sore and I still have a numb hip and numb leg so hopefully the scan on Thursday will explain the reason why.

THURSDAY 31st August 5PM

Jay gets to meet all his V8 SUPERCAR mates as special VIP guest of the V8 Supercar Drivers.

FRIDAY 1st SEPTEMBER

Jay and I will be REVING it up at the V8 SUPERCARS all day , Jay is very excited and can't wait.

SATURDAY 2nd SEPTEMBER

Where are we ?? Where else we are still REVING it up at the V8 SUPERCARS.

SUNDAY 3rd SEPTEMBER

Where are we now??? THE V8 SUPERCARS, the big RACE DAY and we wil not be home until late. Also on Sunday it is "Fathers Day" in Australia - that is hard on JAY as he has no father to celebrate it with - so the V8 Supercars is a great distractions and the V8 Drivers are like a family to JAY.

WE WILL SEE YOU

We will see you all sometime next week, and I am sorry you had to put up with Darlsy mums journal today, I am not as good as writing as Jay is. I know Jay will be back next week and will be anxious to tell you all about the V8 SUPERCARS.

PHOTO'S

Jay's displayed photo's today are - of course JAY and his injured chin - his V8 Supercar mates Marcos Ambrose and Russell Ingall - JAY in a go - kart - Jay standing next to his FAV FORD CAR which was sitting outside our house so he said please take a photo - and the one at the bottom - well what can I say - that is JAY being JAY being an IDIOT with stupid glasses on.

JAY'S SAY

Jay would like me to mention a big THANKYOU to the people who take the time to send him SMILE MAIL - it makes a difference it really does. For a child who has no relatives but me his Darlsy mum, it means a lot for him to receive mail from people who care, so a BIG BIG THANK YOU.

JAY'S FRIENDS

Jay also wants me to tell all his FRIENDS out there that he hopes you are all KICKIN BUTT, fighting the fight and staying strong and positive always. He wants you all to NEVER GIVE UP and keep a BIG BIG SMILE ON THE DILE. He will be around to visit you all soon. He also wants me to remind everyone about why Jay is here, and that is because he wants to do all he can to find a cure for NEUROBLASTOMA, with all the STRENGTH - C0URAGE - DETERMINATION - HOPE and INSPIRATION he has which he passes on to everyone else I know he will achieve his goals in life and with the help of al you people out there, please remember just what you are doing when you donate to NEUROBLASTOMA RESEARCH, you are helping to FIND a CURE for this horrible illness so other little one's do not have to suffer the same as JAY and many others.

Please make sure you scroll to the bottom of the page to read previous Journal entries and please don't forget to visit the GUEST BOOK and leave Jay a message, he loves to know you have visited - we have noticed so many people visit but they do not bother to sign - so please take the time to SIGN THE GUEST BOOK - - Thank you.

"JAY"

WWW.JAYSJOURNEY.ORG

Carn the Kids & Camp Quality

G'DAY all my Mates - it's JAY

JAY'S (SMILE MAIL)

P.O. BOX 2075

FOUNTAIN GATE 3805

Melbourne - Victoria - Australia

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

Please consider being a BONE MARROW donor - it means a lot to kids like me with Cancer - donate Bone Marrow you could save a life just like mine Australian Bone Marrow Donor Registry

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"CARN THE KIDS" - WOW - sorry for the delay, the computer decided it didn't want to do anything and I could not do my Journal - but YIPPPPPEEEEE I WON over the computer and finally got my journal done.

WHERE DO I START: - Way back last week I did a wonderful thing with all my wonderful friends at CAMP QUALITY (laughter is the best medicine) and it was because of the kind generosity of the "AFL" (Australian Football League) and the "BULLDOGS" Western BulldogsFooty guys.

"CARN THE KIDS" - This is a slang term for (Come On) we say "CARN THE BULLDOGS" and the AFL invited the CAMP QUALITY (laughter is the best medicine) kids along to a fun packed FREE day at the FOOTY. I don't barrack for the BULLDOGS but it didn't matter because I think by the end of the game well barracked for them - it was the game between the "ADELAIDE CROWS" and the "WESTERN BULLDOGS" and what a game it was - so close - but guess who WON - YEP the good old BULLDOGS. It was a beautiful sunny Winters day and we had so much fun - it was at the MCG in MELBOURNE, that is the big stadium where Melbourne had the Commonwealth games earlier this year.

THE PHOTO'S :- I will start with the BOTTOM picture and go up to the TOP: **Picture at the bottom is of me JAY standing next to the CARN THE KIDS black Rav 4 Car. Darlsy said she would not mid taking that car home because it was really nice. **The next picture - well WHO'S THAT - it is me JAY and the BULLDOG mascot, isn't he COOL and he was funny. **The next picture is me JAY and my Darsly mum - this was just before the game started. **The next picture is me JAY eating a good old AUSSIE MEAT PIE - see the players on the field, they are the Adelaide Crows - check out all the people in the crowd. **The next picture, now who's this - well that is me JAY and BRUCE who is one of the fantastic Volunteer Companions with CAMP QUALITY who look after kids like me with Cancer when we go on Camp, Bruce is funny and so much fun. **The next picture, now that is me JAY just concentrating on the game sitting in the crown (Darlsy was going silly taking photo's)(LOL). The TOP photo is me JAY and Darlsy mum with our CARN THE KIDS T-Shirts on - we make a great team me and darsly mum.

IT WAS THE BEST DAY: - I had only ever been to the footy once ever and I was so excited about going. Darlsy and I caught the TRAIN because it stops outside the MCG and I love going on the train. During half time at the footy some players came up into the crowd and signed Autographs. After the match, Darlsy and I walked back to the station and caught the train home, I had a great day - THANKS CARN THE KIDS - BULLDOGS AND CAMP QUALITY (laughter is the best medicine)

WHAT'S COMING UP: - OH - something really great is coming up which is only one week away - I will keep you guessing as to what it might be. I will give you a hint - it is something I love - something I collect and something I got to do last September which has come around again and I CAN'T WAIT?????????????????

LAST WEEK: - At School we did a lot of rehearsals for the School production of CHARLIE AND THE CHOCOLATE FACTORY. I had one day off School because I was not well with headaches. I am also doing real good on my INVENTION PROJECT and it is nearly complete.

NEXT WEEK: - On Monday 28th August, I have my GRADUATION PHOTO'S to be taken. On Tuesday 29th August is my ATHLETICS CARNIVAL - I will be competing in the 100m - 800m - Hurdles - Long Jump and High Jump, they are the events I qualified for, so that is going to be a long - big - tiring day and I hope my legs don't ache and I hope I do not get headaches. Darlsy is going to come and watch me compete.

THIS WEEK AT SCHOOL: - More rehearsals of CHARLIE AND THE CHOCOLATE FACTORY, there is only one day to go and I have to do my performance. It will be tiring as we have to perform it three nights in a row and the performance goes for 2 and half hours. Darlsy will be coming to see my performance on Thursday night 24th august. We are not allowed to take photo's because it is filmed by the school and it is copy right but Darlsy is going to ask Mr. Davies on of my cool teachers if he would give us on of the photo's from the production. I am up to the advertising part of my INVENTION.

DARLSY MUM: - She is still waiting for her CT SCAN. It will be on 31st August at the Alfred Hospital. Darlsy is doing a lot better but her back does hurt still and her legs are still numb. Darlsy is great, she is still very sore and hurts a lot but she still does everything for me and takes me places. DON'T FORGET it is Darlsy mums BIRTHDAY on 29th September and I am very proud of her and proud she is my DARLSY. I am going to tell how old she is because I think she looks fantastic for her age and no one ever believes her when they ask her age they say NO WAY you are not that old. My darsly mum will be turning "44" - yep that's right, she always say's you are only as old as you feel and she say's she is a 20year old stuck in a 44 year olds body - I love my Darlsy and she is so pretty.

ME "JAY" :- I have still been getting lots of bad HEADACHES and NOSE BLEEDS and also this week I have not felt the best and have had a runny nose and cough, but I have been going to school. I don't like the HEADACHES - but there is worse off people than me and I wil never complain. The Time Bomb inside me - is still there and sitting on T11-T12 of my spine - although the rest of my MIBG SCAN was good - still I have this dormant spot - but I believe it will stay there and sit there for the rest of my 80years still left to live and it will not get me. It is inoperable so it has to stay there, I will get on with my life, live life and keep giving hope to other little fighters out there. All I can say is that you NEVER GIVE UP, there is always HOPE. I believed and I achieved and beat the odds - so can anyone. Think of the good things in life - not the bad things - think of what you can do - not what you can't do. Doctors are not always right, so please always question them or get another opinion, just don't give up because you are told the worst news. I t happened to me many times, but NO WAY was Darlsy going to give up on me and I was not going to give up on myself, I defied everything thrown at me - so YES IT CAN BE BEATEN - I will always fight, I will always believe I will grow OLD, I wil always do what I want because I CAN and no one will ever tell me I can't. Although I have things I have to tackle still, I will not complain - even today I had so much pain in my legs (my legs get real sore and they ache and the pain is horrible) but I stayed at school and fought the pain, I came home from school and still had the bad pain in my legs so I jumped into a hot bath to help them ease. I am not sure yet when I will be able to see a doctor (Darlsy was very angry) that I was not able to see the Neurologist on the 8th Auguest because we did not have the money and now she is not sure what to do because we were told I would no be able to see him until JULY 2007 - my darsly mum could not believe it, but then she said OH YES I CAN because all your life Jay I have had to fight to get you to see Specialists, Doctors and waiting is just something we have to do and it will never change. We did wait for 8 months but were not told about the money darlsy had to pay, so looks like now we have to wait another year.

FROM ME "JAY" : - I have been sending POST CARDS to friends, I have not got to everyone because I don't have everyone's address but I did send out 7 post cards this week, so just watch your post box you might be one of the one's to receive something from me. I wil try to get around to sending some more this week. THANK YOU to the people who have sent me SMILE MAIL, I love recieving it and it puts a SMILE ON MY DILE - if it puts a smile on my dile imagine what it would do for other kids. I have never had so many people care about me and darlsy before THANK YOU.

NEUROBLASTOMA: - This is what I am all about (NEUROBLASTOMA) and I need to remind people about why I am passionate about raising AWARENESS of NEUROBLASTOMA. Because I know what a journey it is to fight NEUROBLASTOMA, I have the need to let people kknow about this horrible NB MONSTER. I have had a hard fight, it has not been easy, but I have been a lucky one and a SURVIVOR so far. There are kids out there who don't get the opportunity to tell you about their fight because the NB MONSTER has taken their life - I want to make a difference, I want people to know the name NEUROBLASTOMA - instead of people say to me "what do you have" and I tell them and they say "WHAT" what is that - they have never heard of NEUROBLASTOMA, they have heard of every other type of cancer, but not NEUROBLASTOMA, so it is time people new that this cance is a SILENT KILLER and is the most AGGRESSIVE and worst cancer in the world and is taking too many kids lives. I want to raise awareness so we can find a CURE so no more kids have to suffer. SO PLEASE go to my HELP JAY page and if you have the means to make a difference, if you have the means to save a life then please give to NEUROBLASTOMA RESEARCH so a cure can be found. I have SHIRTS and WRISTBANDS which I sell to raise money, so if you would like one please let me know in a PRIVATE guestbook entry, and I will try to get back to you. You must leave a FULL name and ADDRESS and proper email address or we cannot reply. We place an order but we cannot send any orders until we receive payment as it costs us to order the shirts and bands. You can see my shirts on previous Journal entries. SO PLEASE GET THE AWARENESS OUT THERE ABOUT NEUROBLASTOMA AND SUPPORT ME JAY @ www.jaysjourney.org and lets find a CURE.

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"REMEMBER THE DEAD" - "FIGHT FOR THE LIVING"

FRIDAY 25th August in Victoria Australia is DAFFODIL DAY The Cancer Council Victoria (Daffodil Day) - for the Cancer Council of Victoria. (Daffodils are a Symbol of Hope) and I was the face of Daffodil day a few years back. All you do is buy a Daffodil, or a pin, or a bear or other products and it provides HOPE to thousands of sick Australians Battling Cancer. There are 51,000 Australians undergoing treatment for Cancer so your support would make a difference. www.cancervic.org.au

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I HAVE ONE LAST THING MY POEM:

SMILING IS INFECTIOUS - YOU CATCH IT LIKE THE FLU - WHEN SOMEONE SMILED AT ME TODAY - I STARTED SMILING TOO - I PASSED AROUND THE CORNER - SOMEONE SAW ME AND THEY GRINNED - WHEN HE SMILED I REALIZED SOMETHING - I HAD PASSED IT ON TO HIM - I THOUGHT ABOUT THE SMILE - AND I REALIZED IT'S WORTH - A SIMPLE SMILE JUST LIKE MINE - COULD TRAVEL AROUND THE EARTH - SO IF YOU FEEL A SMILE BEGIN - DON'T LEAVE IT UNDETECTED - LETS START AN EPIDEMIC QUICK - AND GET THE ENTIRE WORLD INFECTED.

For every dream that I have and every wish that I make you can be part of it too --- for every secret I have and every whisper I hear I want to share it with you --- I want to share everything with you --- share my dreams and my wishes too --- Share fun and laughter too --- Every game that I play --- All the laughter and the joy --- You can be part of it with me --- All the love that I have --- My love I give to you ---- I want to share my whole world with you.

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Make sure you all have a BIG SMILE ON THE DILE (face) always and treasure every moment you have.

Please sign my GUESTBOOK - I love to read your messages thank you.

Jay & Darlsy Adventure Weekend

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G'DAY my mates it's JAY

JAY'S (Smile Mail)

P.O. BOX 2075

Fountain Gate 3805

Melbourne - Victoria - Australia

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Bone Marrow transplants are a very important to kids like me with cancer - if you ever thought of bone marrow donation here is the link to the Australian Bone Marrow Registry; Australian Bone Marrow Donor Registry

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PLEASE take a moment to look at the movie of who I am - I am a TRUE SURVIVOR: The Survivor Movie

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WEDNESDAY 16th a little update from Darlsy mum: Our phone rang this morning at 8.30am, I picked it up and it was a caring friend from America, I was so shocked but so thrilled that a person we have never met took the time to call Jay and myself to see how we were - thank you Siobhan for the wonderful conversation and Jay was so excited to talk to you. Thank you for taking the time to care it really mean a lot to us.

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I HAVE A SECRET: It is my darsly mum's Birthday on the 29th September and I am hoping to do something nice for her because she never celebrates her birthday and never does anything for herself.( I better not tell how old she is).

OUR HEALTH: Thank you so much for caring - we are feeling a bit better than what we were, but not back to full health yet - both of us still have this bad cough which will not go away and it is very annoying. We are a lot better this week and were able to venture out even though darsly mum was still sick and her back was bad. I have had a bad headaches since Thursday, a couple of bad one's whilst I was at school, but I lay down in the sick bay for while and then was able to go back and do my work. Friday night I had a real severe headache after school and I came home and lay down in bed and darsly gave me some medicine. I don't know now when I will get to see a Neurologist darsly is working on that. Darsly still has to wait until 31st August to have her CT SCAN, so as usual it is the waiting game. So this Bronchitis is still lingering around us, just as we think we feel ok, it attacks again. Although we were not 100% we wanted to go have a good weekend.Today which is Tuesday (down under) I had pain in my chest at school - it was not a stitch, it was pain in the left side of my chest and I got the pain again when I was walking home from school - I told darsly as soon as I got in the front door (I don't know why I have it).

THANK YOU : Thank you to all our wonderful friends - the past few months have been really difficult with darsly having spinal surgery and me being sick and it is really difficult for darsly trying hard to do everything for me. We don't have much but we have each other and that is what gets us through and the caring support we have from people we have never met.

JAY AND DARSLY'S ADVENTURE WEEKEND: (SATURDAY 12th AUGUST) - Darlsy always keeps her promises, and she promised we would do something this weekend and we did (we were not feeling 100% but we could not stand another weekend in doors and it was going to be a beautiful Sunny Winters Weekend, one to make the most of. It may not be exciting to others but it was exciting and fun for me and I got to finally spend a great time with my darsly mum instead of being stuck at home being sick and looking after darlsy or darsly looking after me. We live right at the BOTTOM of AUSTRALIA on the right side of the map near a Bay which is called PORT PHILLIP BAY - well we drove down the Coast as far as you can go to PORTSEA this is where you see DOLPHINS and SEALS playing in the water and we saw lots of them, they were floating in the water getting the sun on themselves. I ran along the beach and climbed through rocks - even though Darsly mums back was hurting, she still walked with me (see the photo's) we got a person walking by to take them for us. The one of Darsly and me with open rock face hole with water coming in was scary, the water was coming in real quick and hearly swept us off the rocks. I love to walk on the beach, I was playing cat and mouse with the waves and one got me and I got real wet, the water was freezing but it was beautiful day and the sun was shining. We were getting real hungry so we got some FISH N CHIPS and we sat at PortSea right on the waters edge and ate them, as I was eating my chips a little baby magpie came down from the tree and landed on the table and he ate right out of my hand - I have a photo of it but can't get it up on the page. We had a wonder day darsly and me driving along the coast stopping at different beaches, but it was getting late so it was time to drive home and we arrived home about 6pm. (SUNDAY 13th AUGUST) - I did not know darsly was going to take me somewhere today - but she did. Darsly would not tell me where we were going - we headed out at 10am and drove 45-50 minutes into the YARRA VALLEY which is WINE country where all the Australian wines are made, but that's not where we are going, up and down hills, winding roads we made it to a place a little country town called HEALSVILLE (I said "I know where we are going") .We arrived at the HEALSVILLE SANCTUARY - it is like a Zoo but a place where the animals are all Australian and they all rome free - I have never been here before and have always wanted to go. We saw every single AUSTRALIAN animal - KOALA'S - WOMBAT'S - EMU - BOOMERS (KANGAROO) - WALLABY - BIRDS OF PREY - ECHIDNA'S - PLATYPUS - and lots more and we got to see the Birds of Prey display where the keeper comes out and shows you what they can do - he came out with a HUGE WEDGE TAIL EAGLE and an owl and they do lots of cool stuff - they fly over the top of your head and they catch food. It was a big place and we walked all over, I wanted to see the ECHIDNA'S and they were out roaming around, there was a little baby one with it's mother and father and darsly took a photo (I love Echidna's). Then as you can see by the photo's I patted a WALLABY, yep that is a little Wallaby not a Kangaroo, he just came up to me and licked my finger, they are so friendly. And the SNAKE, how cool is that, I was so lucky, the keeper put the PYTHON around my neck, he was so soft and gentle. We then walked on to where the WOMBATS were and this BIG FAT WOMBAT loved getting his back rubbed, I scratched his back and he kept coming back for more. Then we walked on to the big animal hospital, they have at the Santuary for the sick animals and they were performing an operation on a MONITOR LIZARD, you could view it all, they have a viewing area where you can watch everything they do, it is a beautiful hospital and in there were two little ECHIDNA'S which had been run over and some baby KANGAROO. We were getting hungry so we got some luch - I had BIG FAT WOMBAT (which is nuggets and chips), darsly wanted scones and cream. It was such a great day, we had seen all the animals, I got a souvenier, darlsy bought me an ECHIDNA (not a real one - I wish) then it was time to start heading home. Darsly and I had a great weekend together, that is the first time we have been able to go anywhere since well before darsly had her spinal surgery, although darsly was still sick and had lots of pain in her back she still took me out to have a fun weekend. THANK YOU DARSLY MUM - I LOVE YOU. We arrived back home about 5.30pm and we were both very tired it had been a very long busy weekend involving lots of driving which I know was hard on darsly's back. We got in the front door, had some dinner and then relaxed and watched CROCODILE DUNDEE 1 and 2, then it was time for bed and sleep. I want to put up some more photo's of our weekend, I will do that during the week, I hope you enjoy the photo's of darsly and me which I put up today. If you would like to visit the places Darsly and I did on the weekend just click these following links : HEALESVILLE SANCTUARY (Melbourne) or WALK ABOUT - PORTSEA these are the magnificent places we went to. PortSea is for the RICH, oh yes, only the multi millionaires are able to live there, some of the places are HUGE and some very famous Australians live there.

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LIVE LIFE: Life is for Living, no matter if you are sick, disabled, or have no illness at all - LIFE IS FOR LIVING and you should LIVE EACH DAY TO THE FULL - as darsly and I were walking along the beach there were a group of mentally disabled older kids - there disability did not matter - they were living their life - they were having fun throwing a ball, playing in the sand, their disability was something just others saw but it is not a handicap, they can do anything they want to - just as anyone can - just as I can that is what LIFE is all about - I may have had to fight hard for my life, but I am alive, I am here and my illness will never bring me down, it will never take away me wanting to be a kid and living life to the full. Sometimes yes it is hard - to other parents, you watch your child going through the difficult times of treatment but it dosn't mean they have to miss out on living life - make the most of what you CAN do, don't um and ha about what you might be able to do, don't be a GUNNA, gunna do it one day - that day my never come - DO IT TODAY, each day is worth living, each day is a memory, each day is to be treasured. Just what darsly and I did on the weekend was the BEST, we did it together on our own, I had fun and I was FREE and ALIVE and the past few hard weeks were just left behind. So please, don't just say your GUNNA do it one day - DO IT TODAY. I might only just have my darsly mum, the only family I have but we love each other, we take care of each other and we do everything together, it might not be much but we do it together and we treasure every moment. The SIMPLE things in life are FREE and that is what darsly and I did on the weekend, it cost us nothing to walk along the beach, it costs nothing to give a HUG, it costs nothing to tell someone you LOVE THEM, it is all free so give it a go TODAY.

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PAIN IS TEMPORARY - QUITTING IS FOR EVER and that is something I will never do - I will never QUIT - NEVER GIVE UP on anything because I beleive not matter what obsticles are in the way I have the Strength - Courage - Determination- Hope and Inspiration to over come anything thrown at me - I believe in always being positive - stay strong and FIGHT LIKE HELL.

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WHAT'S HAPPENING AT SCHOOL: I am doing great with my INVENTION project - I invented a new Stethoscope and it is just in the process of being made- darsly is helping me make it - it is a proto type because there is no way I will be able to get it to work unless I had an expert help me - so as soon as I finish my stethoscope I will show you. Also I have one more week left and I have to perform CHARLIE AND THE CHOCOLATE FACTORY - I know all my lines, I am the reporter and I get to wear a suit (so cool) I never wear a suit. Darlsy is coming to see me perform on the night of 24th August - I think I will be a bit nervous but I will not let down my mates. We have school holidays coming up but that is not until 15th September and that's when I get to go on CAMP QUALITY can't wait. So this is nearly the end of third term, and then one term to go and that goes until 22nd December and I graduate from Primary School. The Bully at school, the one who always picks on me and kicks me and calls me bad things and makes fun of me, and the one who nearly choked me well he got suspended, he is not aloud at the school anymore but problem is he lives around the corner from me and he always threatens me - I lost my mobile phone so I am not aloud to go riding my bike around on my own until darsly get's me a new phone - well I think I lost it because we can't find it anywhere, I think it fell off my pants when I was riding my bike.

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MY SPECIAL FRIEND: I would like you to go and visit my Special Friend, but just before you do - think to yourself (what did you winge about today which was so petty), did you have a bad day? - well my little friend she has so many obstacles in life but she never winges and she always has a smile - so please visit my friend PATTY KIMBRO you will fall in love with her, she is a big 8 years old, but she is so very tiny and loves life.

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PLEASE VISIT MY (NEUROBLASTOMA) FRIENDS:

RYAN MALARKEY (NB) - ADI VARGA (NB) - WESTIN DIETZ (NB) - JOSEPH THOMPSON (NB) -

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PLEASE DON'T FORGET TO SIGN MY GUEST BOOK - LOTS OF PEOPLE VISIT BUT THEY LEAVE BEFORE SIGNING - I LOVE TO READ YOUR MESSAGES AND KNOW THAT YOU HAVE STOPPED BY.

Please scroll to the bottom of page to view previous Journal Entries - on the right hand side of the page.

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G'day it's Jay - Feeling a little better

JAY'S (SMILE MAIL)

P.O. BOX 2075

FOUNTAIN GATE 3805

MELBOURNE - VICTORIA - AUSTRAIA

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THANK YOU TO: JAMES (you know why)

SMILE MAIL THANKS TO: Shelly and Susan and Lori

PLEASE take a moment to look at the movie below - this is what I am - I am a TRUE SURVIVOR: The Survivor Movie

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"G'DAY ITS JAY"

I wanted to come back tonight and write - I have been really sick and darsly mum has been taking care of me, it has been hard for her because her back still hurts a lot and she still can't do a lot of things, but she took care of me no matter what. I have been away from school for a week and a half and I have missed school and I was feeling a little better this morning and I asked darsly if I could go to school - she said it was up to me, she said if I felt like I could go then she would allow me to go. I don't like being sick, I was vomiting a lot and I had very high temps, the headaches were the worst I have ever had before, they were like someone was putting a drill into my head and they would not go away, and the coughing, it was deep in my chest, then the blood noses started again, I have not had a blood nose since around April after I had seen Mr. Bucchanan but they started again. Darsly took care of me night and day, and I was in the hospital for a little while but they sent me home and I got worse, but darsly just wanted to take care of me which she did while she was in a lot of pain with her back. Then darsly got sick as well, she is still really sick and has a really bad cough deep in her chest, but as sick as she was of course she kept taking care of me. We were both really sick on Sunday and we went back to the doctor, they gave darsly some medicine but they did not give me any they said I would fight it off. Well today I suppose was the best day for me, I still feel a little sick but I wanted to go to school because I am in the school production of Charlie and the Chocolate Factory and I play the REPORTER and I feel I have been letting down my mates because I have been away from school. I know all of my lines, but I wanted to go and practice with everyone because I have three live performances, one on the 23rd August - one on 24th August and one on 25th August and I don't want to let everyone down, I have to do it in front of all the parents, teachers and kids. It was great to feel a bit better although I still have the cough and headaches, so I put on my school uniform and got ready for school. Darlsy kept asking me are you sure you want to go to school, and I said yes, I will be fine, I want to go - darsly had a big smile and she said I love you and I am glad you are feeling better because I hate to see you so sick. At school, well my big project it is called the Invention Convention and I have to invest something - I invented I knew Stethoscope with a heap of new ideas attached to it. I have to explain what materials I would use to make it and how I would make it and then I have to make it - that is the part I am up to before I got sick - so darsly as sick as she is took me to the shop to get the materials for my invention. Once it is made we then go to an Invention Convention and I have to do an oral presentation on my invention. I did get a bad headache today, I lay down in the sick bay for a while, I did not want to disturb darlsy so I stayed at school - it was a really cold day today, freezing and pouring rain but I kepts warm with my school Jacket on. I want to say thank you to the people who care about me out there, but there are a lot of others who are sicker than I am - I have only had Bronchial pneumonia and headaches and I am tough, I have got over worse than that before, I know you all care about me and darsly but as darsly says - I always bounce back. I don't think I am deserving of all the help people want to give to me because there are so many kids out there who are doing it real tough and are real sick. Darsly and I appreciate what people are trying to do for us - darsly never asks for help, she is the type of person who tries so hard to take care of me and she always has taken great care of me but she will never ask for help. Please don't worry about me, I am feeling lots better and I proved that today by going to school.

DARSLY'S APPOINTMENT

Darsly got her appointment in the mail today, she has to have a CT SCAN of her back on Thursday 31st August, so she has to wait another 3 weeks. Darsly has a numb leg, they said last week when we were at the hospital that she would have an appointment in 2 weeks from date we were there well its 4 weeks from that time so she has to put up with her numb leg for another 3 weeks. Darsly says she has nerve damage that is why her leg is numb, but we have to wait will the 31st to find out.

I JUST WANTED EVERYONE TO KNOW THAT I AM FEELING A LOT BETTER AND I THANK YOU ALL FOR CARING ABOUT ME - IT WAS DARSLY WHO TOOK CARE OF ME AND GOT ME THROUGH YET ANOTHER ILLNESS - BUT I GAVE IT TO DARSLY AND I WANT HER TO GET BETTER AS WELL.

I hope you like the photo of me and darsly and porka.

Darsly said to say a big thank you as well to the people we have never met who have gone out of their way to help me try find out why I get the headaches. Darlsy and I have never been helped before and it is a little bit over wealming that out of all the people in the world to help they want to help me - we have never had people care before or want to help we have always just got by on our own and had to fight for everything - I am alive today because of my darsly mum, she is the one who kept me alive and fought every single day for me, she had no help, no support, she did it all on her own so for people to want to help is very over wealming. Darsly said that she dosn't think any doctor will ever tell her why I get my bad headaches, she had taken me to all the doctors here and they have not given a reason. I was suppose to have that other Neurologist appointment the other day but we could not afford to go to it. Darsly said she really dosn't know what any other doctor can do - but we do appreciate that people care so much for me that they would go out of their way to help.

MY FRIENDS:
I am hoping to get around to visit you all very soon, I am sorry I have been away, but I have thought of you all everyday. I know some of you are really sick and I know some of you are just KICKIN BUTT. I promise to come visit you all real soon. Until then you all KEEP STRONG - STAY POSITIVE ALWAYS -NEVER GIVE UP- GIVING UP IS NOT AN OPTION- ALWAYS KEEP A BIG SMILE ON THE DILE-LIVE EACH DAY TO THE FULL AND TREASURE EVERY MOMENT.

G'day to:
Colette - Angel Emily's family - Angel Navada's family - Lenzie - Sweet little Patty - Summer - Angel Skylers family - Julianne - Karen - Kira - Zoie - Morgan Rose - Megan - Riley and Alex - Little Philip - Yashar - Angel Kaitlyn's family - Brenda - Stacy - Grace - Mia - Josh - Westin
Sorry if I missed someone, I think of everyone and I send you all lots of my strengh - courage - determination - hope and inspiration and heaps of my BIG BIG BIG BIG BIG KOALA HUGS.

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*GOALS ARE DREAMS WITH DEADLINES* *When we seek to discover the best in others, we somehow bring out the best in ourselves* *Enjoy the little things, for one day you may look back and realize they were the big things* *Keep your fears to yourself, but share your courage* *You never know when you making a memory* *Too much of a good thing is wonderful* *The moment may be temporary but the memory is forever* *Change starts when someone sees the next step*

Living Life to the full the best we can

JAY'S (Smile Mail)

P.O. BOX 2075

FOUNTAIN GATE 3805

MELBOURNE - VICTORIA - AUSTRALIA

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

G'DAY to all JAY'S Friends

This is Jay's darlsy mum again, I will make it a little shorter today as we really are not feeling well.

First I wanted to thank AMY & JAY KOLO - for the thoughtful note they wrote, it is only because of them Jay has a website and I thank them from the bottom of my heart for what you want to do for Jay. We expect nothing, and we don't want to ask for anything, I have always just struggled on but I give in to the fact it is really difficult for us right now - it is hard trying to do it all on your own with no help especially financially. I gave up everything as anyone would do for their child and I did not think this cancer journey would take up Jay's life - I new it would change our life but did not know what it would do to us financially - I suppose and I did think I would be able to manage, but in the end it has taken everything I have. I am a single mother to Jay, and have been all Jay's life, I have always worked, I even tried working whilst he was real sick but I had to give in to that - of course my heart is with keeping my son healthy but on this journey I did not expect to have three terminally ill people in my life and that's what really made times real tough - I had no chose but to give up work for my mother - my father and for my son - anyone with a heart would do that, I never thought of myself, I was thinking of my ill family. I am proud to say I did it all on my own with no help, how I got through I don't know, I think that is why I am so tough because I had to be. Now I am unable to work because of my Spinal Surgery - I have wondered what next in our life, but it has got to a point where I can't even afford basic health care for my son. Seeing Jay sick is not what I want, I am doing my best to keep him well and yesterday when the hospital rang about his Neurologist appointment I was in shock as to why money was more important than seeing my son, I could not pay the amount they wanted so I had to cancel Jay's appointment and they did not seem to care one bit, all they cared about was the fee they wanted. Sorry you don't pay the fee your son cannot be seen, that is appalling in my opinion - money more important than the patients. Anyway, I thank everyone who cares, all I want is for Jay to get better. It is harder on a parent who has a a child who has battle cancer because when they get sick it is very scary and when a doctor sends his home from the hospital with high temps, severe headaches, nosebleeds, low white cell counts, low leukocytes and low lymphocytes, vomiting and sent home with no medication then you wonder why I worry - I go to the doctor for help but get none. After Jay being released from the hospital he became worse and I nursed him home from school for over a week and I am not well at all myself so it has really taken it's toll on me. There is only one thing I myself wish for and that is for something great to happen for Jay and for him to get well because I can tell you he has had his fair share of a real tough life. As I said, I want to thank AMY and JAY KOLO again for their kindness, I am not holding my breath for anything good to happen but I do wish it would.

DIFFERENT FACES OF JAY (MY HERO)(MY INSPIRATION TO KEEP GOING)
I have thousands of photos of Jay and his Journey, the reason I put the above ones up was just to show the different faces, the one of him laying in the hospital bed is not how I like to see him but that is how he has been for over a week now. I love to see that BIG SMILE, I love to see the healthy Jay so I guess I put the different faces of Jay because that is how his life's journey has been, it has been a roller coaster of Great - Good - Not so Good - Bad and Very bad through out his life, just when you think you are on top of things, something happens and he goes back down in a pile again, then he bounces back, I am sure other Cancer parents can relate to what I am talking about, you have good days, bad days and it just goes on and on like this and in Jays case this has been the story of his life. I want people to know as well that just because a cancer child goes off treatment and you see hair on the head dosn't mean they are in the clear, as I have always said, I really hate it when people come up and say OH HE DOSN'T LOOK SICK - bla - I always say back now - WHAT IS SICK SUPPOSE TO LOOK LIKE and walk away because I can't be bothered with ignorant people. I want to put some more photo's up and I will do that, as I said I have thousands but until I get the Photo Gallery up and running I will just have to continue to put them on the journal.

HOW IS JAY TODAY and me
I will be honest and say we are not doing to great at all. BRONCHITIS and PNEUMONIA really takes it's toll on a little body and it's taken it's toll on me. When we both went back to the doctor (I vomited in the doctors office. I was more concerned about Jay (I was dumbfounded at what he said) No use giving him any ANTIBIOTICS they wont work - let his system just fight it.Jay's head hurts, legs hurt, throat hurts, chest hurts & nose bleeds. Atleast today I am getting food into Jay, I worry about that because he is a very fussy eater and he is skinny like me and he loses weight very quickly when he dosn't eat. I have not weighed him but I know he has lost quite a bit over the past week and so have I - we are from a skinny family, tall and skinny so we really can't afford to lose weight but I must admit I have lost a lot of weight since my Spinal Surgery and now being sick I have lost more and I can't afford to lose weight I have no weight to lose neither can Jay he is skin and bone so to get some food into him and see him eat made me real happy. Jay was saying that he wants to go to school because he misses all his friends, I told him I would see how he is in the morning and if he is not coughing as much I would see if he could last just the morning at school - it is a big year for Jay at school being his last year in Primary School he has his graduation this year, so for him to miss so much school is not good but we are trying to keep up with homework which I got from the teacher. I am hoping he can go to school for a little while tomorrow to see his friends, I know he is determined to go even though he is quite sick.

THANK YOU EVERYONE FOR CARING - I MEAN THAT FROM THE BOTTOM OF MY HEART - I CAN ONLY DO WHAT I CAN DO AND I AM DOING MY BEST AND I ALWAYS HAVE - I WOULD GIVE UP MY LIFE FOR JAY - HE IS MY WORLD AND I WOULD LOVE TO GIVE HIM THE WORLD BUT THAT JUST NEVER WILL BE - I GIVE HIM LOVE AND HE GIVES ME LOVE BACK - WE STRUGGLE TO SURVIVE BUT OUR LOVE GETS US THROUGH AND ALL THE PEOPLE WHO TAKE THE TIME TIME TO CARE - THANK YOU AND I HOPE JAY CAN GET BACK TO DOING HIS JOURNAL AGAIN REAL SOON.

Please don't forget you can send JAY some smile mail, he loves to get mail and he got a post card from VANCOUVER CANADA today from Susan, someone we don't know, but this person took the time to think of Jay and send him a postcard - that really means a lot - thank you Susan.
PLEASE DON'T FOR GET TO SIGN JAY'S GUESTBOOK
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REMEMBER: DON'T TAKE YOUR LOVED ONE'S FOR GRANTED - ONCE YOU LOSE THEM THEY HAVE GONE FOREVER - GIVE THEM ALL A BIG HUG EACH DAY AND TELL THEM YOU LOVE THEM EACH DAY - TREASURE EVERY MOMENT YOU HAVE AND LIVE EACH DAY TO THE FULL - ("JAY")
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ABOUT MY SHIRTS (US DOLLARS ARE INCLUDED) ADULT T-SHIRTS size S M L XL XXL XXXL: USA dollars $18-00 Australian dollars $20.00 KIDS T-SHIRTS size 8 - 10 - 12 : USA dollars $13-00 Australian dollars $15.00 WRISTBANDS : USA dollars $4-00 Australian dollars $5-00 PLUS POSTAGE:USA dollars $5-00 Australian dollars $6-70 Cheque/Money order payable to "JAY BULL"including postage along with your name address and order to: P.O. BOX 2075 FOUNTAIN GATE 3805 MELBOURNE-VICTORIA-AUSTRALIA
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Jay still not very well

JAY'S (Smile Mail)

P.O. BOX 2075

FOUNTAIN GATE 3805

MELBOURNE - VICTORIA - AUSTRALIA

G'DAY to all JAY'S wonderful supporters

UPDATE: MONDAY 7th AUGUST:- Not any better - both still pretty sick - the day spent in bed trying to get each other better. Also - remember the appointment Jay was waiting on with the Neurologist at HIS hospital I kept it as a back up incase his headaches were continuting - well that appointment is Tomorrow the 8th and the hospital rang and advised me that I have to pay an up front fee which is a rediculous amount I don't have. I asked do I have to pay it there and then - they said you must or else the Neurologist will not see him -I said well you may as well say the Neurologist will not be seeing him because I don't have the money to pay it - so there goes an appointment we have waited for - for over 6 months - If I had the money of course he would go but I am not rich - I am not working so no money coming in because I have had my spinal surgery so medical exspenses I just can't afford and not fair that no one will see you if you don't have money - basically that's it - if you don't have the money you don't get seen. And they charged me a fee because I could not attend the appointment. Even as sick as we are right now I would have taken him but I was not told about the upfront fee's. Bad to worse.

UPDATE: SUNDAY 6th AUGUST:- Not a good time in this house hold right now. We (JAY and myself) are very sick. I never get sick and this has really got us both good. Crawled out of bed the both of us this morning and went down to the doctor - I have the worst case of "BRONCHITIS" and also Jay has "BRONCHITIS" the problem being both of ours is turning into "PNUEMONIA" which is the worst case senario. Just to get on here and type this has been a real effort but I wanted to keep you up to date. When I cough it really hurts my back badly - trying get over the SPINAL SURGERY and now this happens, it is very very painful when i cough causing the pain in my back to be worse and JAY - poor little man - he has not been this sick in a long time either. Jay has still continual headaches, my head is not much better, and we are both throwing up - so this house hold is a real sick zone. Got some medicine and we both walked through the front door and collapsed into our bed. I am a little concerned more about Jay than myself because he is very skinny (long and skinny) and he has not eaten much at all during the past week - mainly trying to get fluids into him. It is hard trying to look after him when I am feeling so sick myself, but I have always coped, I have always found a way. Thank you so much to every one for all your kind words, they really mean a lot to know that people care (people we have never met and will never meet). As a single mother just getting by, it is nice to know that people do care about Jay - thank you. Thats it - I have to go back to bed - Jay is in bed trying to sleep but it is difficult with the constant coughing.

UPDATE: SATURDAY 5th AUGUST: - Well what can I say - it is very misserable in this house hold at the moment - we are both very sick with this Virus thing and Jay is still not good - headaches and blood noses I just can't get control of - so I will have to try get some answers once again from doctors why these continual headaches and nosebleeds - I have a headache yes but not like Jay does, his are servere and makes him vomit and he begs for me to stop them. So the household here is a sick zone (just hope SNOWFLAKE) the dog dosn't get it. Today was spent just sitting indoors and we did not get to do anything or go anywhere because we are so sick - lets see what happens tomorrow?

Hi everyone this is Darlsy mum - I know you are all dying for Jay to return to doing his journal, but he has just not been up to it. What a week it has been. Jay has been very sick since Thursday 28th July and it has been over a week and he is still not well. Guess what ! Now I have the bug he has, so the both of us are feeling really poorly - here in Australia there is a really deadly flue virus going around and looks like we both have it now - I am barking like a dog now (coughing) and the pain in the chest - gosh it really hurts so it must be twice as bad for Jay, he is still coughing badly - the vomiting has stopped for him which is a good thing, but the HEADACHES - and NOSE BLEEDS still continue which is frustrating because just as we thought we got on top of those Nose bleeds they have started again and with Jay it is not just a little drop coming out of the nose, it pours out.To top it off we both have LARENGITIS - yep we lost our voices (some people would say thats great) because we both never shut up (lol) but poor Jay his throat hurts alot and now no voice at all. We are both trying to keep each other warm and snuggly, it is very cold here in Melbourne - freezing to be honest so we have both been sitting near the heater keeping warm and trying to get each other better. I don't really care about myself - I just want Jay to get better, but that is just not happening. Yesterday I thought he was getting a little better, but he soon went back down again. My greatest wish for this weekend was for Jay to be well - so I could take him somewhere - we have not been anywhere since my Spinal Surgery - Jay has been stuck at home taking care of me - but now he is sick and he has been stuck in bed all week - I was not expecting to catch this virus as well - as much as I am feeling very sick myself - I want Jay to get better so I can take him to do some kid stuff - be a kid on the weekend - but that dosn't look like it will take place - WE ARE NOW BOTH SICK. I don't mean to complain (I have no right to do that) - but feeling like I do right now I can understand how sick Jay feels. I am not important - I can get myself over it - I just want Jay to get better.

The photo's above: The two photo's of Jay with the BEAR they were taken yesterday (so you can see he looks pale - washed out and unwell) Jay has very dark skin and usually has beautiful rosy cheeks just like the top photo.

The DVD'S: You know how I mentioned in the last journal I bought Jay some DVD'S because Jay loves comedy - Jay is a comedian himself, he is so funny. Jay loves ADAM SANDLER & JIM CAREY and some other comedian who I can't remember their names - so I got him HAPPY GILMORE staring Adam Sandler and FUN WITH DICK AND JANE staring Jim Carey, in a hope I would hear a liitle laugh out of him. He lay in bed and watched them - he loved them both and I did hear a little giggle - he said he wanted to laugh more but couldn't because his throat was too sore, but said he will keep watching them and they might make him get better. Jay is a kid who loves to laugh, and when he can't laugh the house really dosn't seem the same - Jay is always laughing - he laughs at anything. And as I said Jay is very funny - just looking at him makes me laugh - Jay has this way of being able to make anyone laugh - who ever meets Jay they always comment on the infectious smile he has - I miss his laugh this week - Please help him get better so we can get smiling happy Jay back.

FROM A PARENTS POINT OF VIEW: I worry about Jay every single day - I worry more when he is sick like he is. If you are not a parent of a child with Cancer, then you wont really understand what it is like. Jay has had to battle hard through out his life to have a life and for a parent you always worry. Kids who have treatment, who are put in remission - I hate that word - that word means nothing - it dosn't mean they are cured - NEUROBLASTOMA dosn't have a cure, and it is always worrying whenever Jay gets sick. Although he is doing ok, still he has and also on his MIBG scan report stated the spot which sits at T-11 - T12 of his Spine. It is always a scary time for me as his mother - his carer the person who is suppose to care for him and protect him when he gets sick it frightens the hell out of me. Jay is all I have - no doctor has ever given any guarantees (they can't do that) - once you have cancer you always have cancer - it is always in your life - but when your child is doing ok you say to yourself hopefully we can have a normal sort of a life but it never happens - it is always in the back of your mind something is going to go wrong - it has happened to Jay many times - as much as I want him be always be well - when he gets sick it scares me to death. Jay just dosn't get sick - he get real sick. Once you are diagnosed with cancer it will always be a part of your life - it is life changing and you must realise even if your child is off treatment dosn't always mean everything will be ok. I have lived through so many ups and downs with Jay, just like riding a roller coaster, and him being all I have - I hate to see him sick - I have near lost him many times to cancer the last thing I want is to lose him to some deadly virus (that will never happen) but the point is I have and Jay has fought so hard to stay alive and try to beat cancer it would be so hard to take to lose him to some stupid virus. Sorry for rambling on today, - As I said, unless you have a child with Cancer then you just don't know hard it is not to think the worst all the time.

YESTERDAY (Thursday 3rd August) AT THE HOSPITAL: I had my appointment at the hospital, that was the first chance I have got to see the Surgeon since having my SPINAL SURGERY - Well, what can I say - what a waste of time that appointment was. I had to take Jay with me because there is no way he could go to school -so being the stubborn determined person I am - of course I defied the doctors advice and I DROVE MY CAR - YIPPPPPEEEEE, I was sick of not being able to drive so the only way we could get to the hospital was if I drove myself, so that is what I did. It is quite a drive into the ALFRED HOSPITAL and it was peak hour traffic so we had to leave at 7.30am in the morning to get there for a 10am appointment. We arrived and had a little time to do something Jay wanted to do and that was to visit his Nurse friends in the EMERGENCY DEPARTMENT - oh yes they all love Jay. Whilst I was in hospital, when Jay can to visit me, he also drew pictures for the Emergency Department and he would go down and visit them and present his pictures to them - they loved his drawings and they stuck them up in the Emergency Department, so when Jay new I had the appointment at the Alfred of course he wanted to draw them another picture. Before this Jay received a wonderful letter in the mail from the ALFRED HOSPITAL thanking him so much for his wonderful drawing of the hospital and that they had put it up on the wall. So, I shall explain the ABOVE picture you can see which Jay drew. He quickly drew that picture, he drew the helicopter landing pad with the helicopter landing (you see) the ALFRED hospital is the biggest TRAUMA hospital in the Southern hemisphere, this is where all the bad road accident victims, work accident victims anyone who has been hurt really badly are flown in my the Trauma helicopter and they are treated. We have a show on TV - it is called MEDICAL EMERGENCY and it is filmed at the Alfred Hospital Emergency Department and Jay never misses the show and when he got to meet the real doctors who are part of the show he was thrilled. Jay wants to be now a Medical Emergency Doctor. We went down to the Emergency Department and he met up with Alison and Jay gave her the picture (which you can see above) and she was thrilled and said everyone here talks about you Jay and what a wonderful boy you are. Jay also gave her one of his T-Shirts and a wristband - then the thrill of a life time which no one gets to do - Alison said, would you like to go and see where the helicopter landing pad is - of course Jay's eyes just lit up and he said yes. No one is aloud in this area of the hospital, it is totally closed to public. Alison took us through doors and then the last door she opened and there it was the HUGE HELICOPTER PAD and a room for the trauma patients. Unfortunately there was no helicopter today (well in a way that is a good thing) but Jay was just mesmorised, he just stood looking at the helicopter pad, what a thrill for him. As we were going back to the Emergency Department we bumped into one of the doctors who appears on the Medical Emergency show (it is a real show) which shows real victims, and real operations, Jay was just standing there and could not believe it was one of the doctors from the show. The other two photo's - well that was the first smile I could get out of Jay, the first smile I had seen for a week. At the hospital they have these BEARS, he is called ALFRED BEAR, so I got one for him and the pink key chain around his neck Alison gave that to Jay - it says on it ALFRED HOSPITAL EMERGENCY AND TRAUMA DEPARTMENT - so just little things like those really made his day. If you take a look through the Guest book you will see an entry from ALISON from the Alfred hospital - they really love Jay at the Emergency Department and Jay loves them as well. You will see in the photo's Jays face is still very puffy, he was putting on a brave face I can tell you - although he felt miserable. Anyway - it was my turn to see my surgeon - as I said before what a waste of time this appointment was. I sat down with Mr. HUNT, I explained to him about my Lower (Right) leg being numb (I can't feel my leg), I explained about the pain I have in my hips and my Left leg, and explained how my left leg with not work properly, I explained that I had enough of all the drugs I had been given and I took myself off them because they were making me feel sick. As soon as I stopped taking the medication I felt heaps better. I hate taking medication, I am not one for putting drugs into my body, so I defied the doctors order again and I took myself off them. And I told him I drove my car today. He proceeded to show me an X-RAY of what is inside my back - I had no idea I had all this metal inside me. I have all these TITANIUM rods and screws in my back (he is going to give me a copy of the picture so I can show you all). After looking at the rods in my back, he then looked at my numb leg (I asked why is my leg numb) well I already know the answer and that would be because of nerve damage but I wanted to hear it from him - but I didn't, he said nothing and then proceeded to write out referrals to come back in 2 weeks time for a CT SCAN. I said to him - why can't I have the CT - SCAN today while we are here - he ignored that and said come back in 2 weeks, have the SCAN and I will see you on the same day - GREAT - I now have to put up with a numb leg and a leg that doesn't work for another 2 weeks (honestly - I hate doctors). So, that was it, was that a waste of time or what - I got no answers to any of my questions, all I got was come back in 2 weeks. Being a little ticked off - we then had to wait in a cue to make an appointment for the CT SCAN, finally got to the desk and she says - we will post the appointment time out to you (OH) I was just about to explode. Jay was starting to feel really unwell but before going he wanted to drop back in and say good bye to Alison in the Emergency Department, so down the lifts we went and through the Emergency Department doors, Jay stuck his head through Alisons door and said goodbye and he told her we will be back in 2 weeks time. Jay didn't want to go, he just wanted to stay in the Emergency Department, he is just fascinated by it all. There is a wall which has all these photo's up of TRAUMA patients, ROAD ACCIDENTS, OPERATIONS, Jay just loves it all. We left the hospital and drove home - not as much traffic so got home quickly. I put Jay straight into bed, he was coughing so much he was about to throw up and very pale.

TODAY FRIDAY 4th AUGUST: We are both miserable, Jay has missed the entire week of school because of this dreadful - virus - flu - what ever it is which is making him and now me so sick. So, looks like we won't be doing much on the weekend, I need to get myself better and more so I need to get JAY well and back to school next week. I was just starting to feel a bit better after my Spinal Surgery (as good as one can feel) after such a big operation and now I have this bug (if it is not one thing it is something else) so now I am sick and back to square one of trying to take care of Jay whilst we are both sick (it is a challenge) it has to be done - we have been through worse - WE CAN DO IT - I sometimes wish I had a magic fairly who would do everything for us - but I suppose I am that magic fairy, I will always take care of Jay no matter what - always have taken care of him all on my own and always will - through the tough and the rough we always come out the other side. I am taking Jay later this afternoon to have another Chest X-Ray and more blood tests - this illness with him has just gone on too long and he is not getting any better. He say's his chest really hurts alot when he coughs still - so I want to make sure the chest is clear and this thing dosn't turn into something worse, so I let you know next week about those results.

I would like to thank everyone for there support - Jay and I appreciate the time you all take to care, Jay loves receiving all the wonderful messages - he reads every single one of the and we both can't believe how kind people are - people we don't even know - thank you. We can't always answer to everyone - we try to - but just because we don't doesn't mean we have ignored your kind words - it is just difficult to respond to everyone.

We will have a break from the computer over the weekend and hopefull Jay will be well enough to do a journal on MONDAY (Australian time), so please all have a wonderful weekend - especially to all Jay's little sick friends who he loves to cheer up. Jay did want to go and visit a few of his friends which he has done and hopefully he will feel up to visiting a few more over the weekend. Do what Jay does, stay strong, stay positive always, and never give up - Jay gets by on his strength-courage-determination-hope and inspiration so I am sure he would want me to send all that on to his sick friends and also to let the parents know that each day should be treasured and tell your little ones you love them everysingle day - Jay and I tell each other - I LOVE YOU- about 10 -20 times a day and that is true - and we have hugga time - make sure you take time for your little ones', not just the sick one's but also the siblings, we have half our hugga time each day - Jay can't go without his hugga time - it is when you just turn off the TV and all other appliences and you sit, on the couch on the bed where ever and have quiet hugga time together - try it - it means alot to kids.

SOMETHING FROM JAY:

*GOALS ARE DREAMS WITH DEADLINES* *When we seek to discover the best in others, we somehow bring out the best in ourselves* *Enjoy the little things, for one day you may look back and realize they were the big things* *Keep your fears to yourself, but share your courage* *You never know when you making a memory* *Too much of a good thing is wonderful* *The moment may be temporary but the memory is forever* *Change starts when someone sees the next step*

ABOUT MY SHIRTS (US DOLLARS ARE INCLUDED) ADULT T-SHIRTS size S M L XL XXL XXXL: USA dollars $18-00 Australian dollars $20.00 KIDS T-SHIRTS size 8 - 10 - 12 : USA dollars $13-00 Australian dollars $15.00 WRISTBANDS : USA dollars $4-00 Australian dollars $5-00 PLUS POSTAGE:USA dollars $5-00 Australian dollars $6-70 Cheque/Money order payable to "JAY BULL"including postage along with your name address and order to: P.O. BOX 2075 FOUNTAIN GATE 3805 MELBOURNE-VICTORIA-AUSTRALIA

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

To All JAY'S wonder friends and supporters - I thank you so very much for caring for Jay, your words to him mean so much so please don't forget while you are looking at his website please don't forget to sign his GUEST BOOK, just a message to say G'DAY is enough, he just want's to know you have taken the time to stop by and say Hi.