MIBG SCAN

G'DAY ALL MY FRIENDS THIS IS JAY

On the 28th June - Darsly and I went to the hospital - we saw Peter my Oncology Doctor, he could not believe I have even grown more and he said I have grown 12 centremeters this year and my feet were as big as his were.

Peter said I had wonderful teeth, he checked me all over and said I look wonderful and healthy.

We talked about my headaches and nosebleeds, but he was more concerned about the headacehs still and was not impress that the "other doctors" just palmed me off because they could not figure out why I was getting the headaches. Peter scatched his head and was thinking of what to do next.

My MIBG scans were ok - but there was a BUT - which is a little confusing when the results say no schintigraphic evidence of disease - BUT still spot on T11-t12 - so in my opinion the results should not say what they do.

T11- T12 on my Spinal cord Dormant spot (Could sit there the rest of my life or it may not - you never know with Neuroblastoma) Scan stating consistant with stable disease.

It's good news but still worrying - I told you all I have Neuroblastoma but IT DOSN'T HAVE ME.
I stomped on it - chewed it up - and threw that NB MONSTER right out the window but still states on my scans the spot on T-11 and T-12 of my spinal cord - dormant but still there and with Neuroblastoma you just don't know - it could come back at anytime.

This still dosn't mean I am out of the woods, just a better result than usual. Still have to be monitored very closely to make sure the NB cells are not hiding - which they can do - Living with cancer is a an on going thing - good results are great - but dosn't always mean I am in the clear. It is like the word Remission - that is a word which is just that - Remission is just a meaning for the disease being stable - and that is what mine is Stable. The spot on T-11 - T12 is still there - it dosn't seem to be doing anthing and is sitting dormant. Dead is a good word for it - hope is stay's dead.

NOW FOR MY DARLSY MUM:

Darlsy goes into hospital tomorrow THURSDAY 29th June (Australian time) to have her Spinal Surgery (well that is if they don't ring up and cancel it again. It is now 4.16pm on Wednesday afternoon and they have not rung yet (but don't hold your breath). Darlsy is having SPINAL FUSION of L4-5 S1 and we will be away from about 5-6 days so this is my last post until we come back to the house.

Please remember everyone: Always have a Smile on the Dile, give some one a hug a a day, tell someone you love them and don't winge about the most petty things in life. Us cancer kids never winge and we have to go through alot - so before you decide to have a winge and a gripe about something which is petty - please think of us cancer kids and think how we have to fight hard for our life but we always have a smile and we never winge about anything. Make the most of your days, treasure every day and every moment you have in life because you just never know.

Please take the time to visit my Angel friend EMILY today - Please click the following link to EMILY'S page: EMILY (NB) Today 28th June is EMILY'S 3rd birthday, but her first birthday in Heaven. Emily lost her battle this year with the same illness I have had to fight - she was so little and it is not fair and I will continue my fight for all NB kids as well as myself to find a cure for this horrible illness Neuroblastoma.

I have to go - I will see you all in about a week - take care -

STRENGTH-COURAGE-DETERMINATION-HOPE AND INSPIRATION got me to where I am today and a Smile on the Dile (face) always.

MY MUSIC IS BACK ON MY SITE - SO TURN UP THE VOLUME AND ENJOY (Shannon Noll singing Lift on my welcome page and singing Shine on my Fav page) - Shannon is my idol and he is a True Blue Aussie just like me.

Please don't forget to sign my Guestbook, I love to read my messages and love knowing you have visited me - just because all my tests are good dosn't mean I am free of Hospitals and doctors - I still have to be monitored very closely and of course I have lots more to give and to tell. Thanks everyone.

Below a link to what I believe I am (A True Survivor)

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

RADIOACTIVE MIBG SCAN (17th to 23rd June 2006)

JAY'S (Smile Mail)

P.O. Box 2075

Fountain Gate 3805

Melbourne - Victoria - Australia

G'DAY - This is the week that was for me & darlsy mum:

Wow - what a week from Tuesday to Thursday having MIBG Scans (they let me have Friday off - yippeee), my week at the hospital was documented by darlsy so darlsy mum will tell you everything that happened. I am ok, I did not like the injections, but everything else did not hurt at all, but took a very long time. So here is darlsy mum now to tell you all about the week that was:

It all started last Saturday 17th June, Jay had to take the Lugo's Solution 2 times per day on Saturday/Sunday/Monday/Tuesday and Wednesday.

Tuesday 20th June, we arrived at the hospital Monash Medical Centre (on time) but as you know waiting is something to be expected - so that is what Jay and I did - we waited. Jay was hungry, but not allowed to eat, as he had to fast from 7.30am that morning. The longer the wait, the hungrier and grumpier he became. So we played Eye Spy, and I think we had eye spy'd the entire hospital, so we had to find another game to play. We walked up to level 4 to the Oncology ward to make Jay's appointment to see his Oncology doctor on Wednesday 28th June, that took up a little bit of time, then we walked back to the Nuclear Medicine Department but still had a bit of waiting to do. Jay was very figity at this stage and was pacing the hospital floor. It's now 10.30am and we are still waiting and playing more eye spy.

12.30pm finally and Jay was prepared for the injection of MIBG tracer. Injections is something Jay is not fond of but tolerates them. The nurse put the needle into the arm which had to stay there, then a doctor had to be called to administer the MIBG tracer (which is radioactive). As the MIGB was being injected, a nurse had to take Jay's blood pressure every 2 minutes, for the entire time it took to administer the tracer. It took 10 minutes to totally administer the tracer which was concealed in what looked like a metal capsule. Jays blood pressure every 2 minutes was:
130/20
125/70
120/70
120/70
120/70 so his blood pressure was good through out the administration of the tracer. After that the nurse had to continue to monitor the blood pressure every 15 minutes and it was always around 120/70 or 130/60.

It is now 2pm, Jay had to stay laying down for atleast an hour after the tracer was put into him, then we had to walk around until 3.30pm.

Jay had his first lot of scans which took half an hour, they were laying flat which the camera's one above (anterior) and one underneath (posterior). The following scan took another half an hour, this one took was different, it rotates the body, slices and dices and takes photo's every 30 seconds. So, it is like Jay is laying on the scan bed and a camera is doing a big circle around his body. As you can see by the photo's above you can see what the scanning machine looks like (like a big donut).

I was watching the monitor, which is like a TV screen and it shows the body, and a particular part was glowing a lot brighter than every other body part and this spot was on the left at exactly T11-T12, so not sure of anything, that is just what I saw a big glowing spot. . On the rotating scan again this bright spot appears, hopefully it is nothing, but I see it very clearly on the screen. As the machines scanned around Jay's body, whatever it was is definately on the left side. The first day Jay has the RED on.

Next day, Jay has the Orange shirt on. As the day's go by the tracer is going through the body more and the body becomes brighter, objects which should NOT be there gets brighter. The body glows yes, but unless you are an expert and can disyfer what is and is not suppose to be there (well, that is left up to the experts) but abnormal things glow up brighter than normal things.

We did not have as much waiting to do today, the first scan took half an hour that was another done posterior/Anterior, again I saw the spots brighter, hopefully they are nothing. The next scan was set up for rotation taking pictures every 30 seconds and then slicing and dicing and lasting half an hour.

After this scan, the nurse asked Jay to go to empty his bladder, it was whilst he was gone she told me Jay has to have another injection. I said OH NO - you can break that news to him, he hates injections. I did not know he had to have another injection otherwise I would have told Jay. When he came back she broke the new to him and you should have seen the look on his face - he was not impressed, but as you can see by the photo above he let her do it and he said - oh it did not hurt.

As you can see above, the photo of Jay in the Orange shirt, that is the injection he knew nothing about. This injection is called DTPA, which has a very long name which is :( DIETHYLENTRIAMINEPENTAACETATE ) is that a big name or what. This is administered as Neuroblastoma sits on the Adrenal Glands above the kidneys and this makes the kidneys brighter also it is administered because Jay has had radioactive material put into his body and is an easy way to explain, it helps get the material out of the body quicker. Before this DTPA can be given, it has to get approval froma Doctor, so the doctor came into the room, approved it can be given, so it was them administered by injection and then the 6th scan could be done on the kidneys.
If you click onto this link it will tell you about
DTPA (Diethylenetriaminepentaacetate.

As I was watching the screen, the first kidney scan took 15 minutes and the right kidney showed very well but the left kidney was not showing as much but had a bright glowing spot on it - so again I really don't know what it was and why the left kidney did not show up as well as the right kidney. After this scan was complete, they had to do just one more which took another 15 minutes and that was it for the day.

This procedure went on for one more day Thursday we spent another wonderful day at the hospital having same scans each day (one great thing was we did not have to go back for Friday) great, a day off the hospital which made Jay very happy.

Now is the waiting, we will not know the results of the MIBG Scan until Wednesday 28th June (next week) so that will be a big week as hopefully on the 29th I go to have my Spinal Surgery - but that has still not been confirmed. We have to now sit back, wait and hope for great results when we go back on the 28th to see Jay's Oncology doctor. He will also be discussing Jay's continual headaches, so I will not be leaving the hospital that day until I am satisfied with the answers I get - hopefully great answers and great Scan Results.

I hope you take the time to look at the photo's above, these a just a sample of what occurs at the hospital. I took a lot more photo's but can't put them all up. So as you can see, it is not nice what these cancer kids have to go through, it is a long procedure Jay's particular MIBG Scan, and one that takes up many day's. Jay is happy not to have to go back to the hospital Friday and is going to go have a well deserved play, bike ride, walk, swim whatever he wants to do for his holidays.

Well that's it for now, if I keep writing I could go on for ever, I broke it down to a short story but there is a lot more to it. Jay is doing ok and says a big hello to all his little friends and tells them not to be scared if they have to have this MIBG scan done (it is only the needle Jay doesn't like) the rest is a breeze, he said it doesn't hurt, you just lay there on the bed, you can go to sleep if you want, it is not noisy like the MRI Scan, it is very quite and there is nothing to be scared about.

Thanks to everyone who drops in to see Jay, make sure you read all the journals, especially the one before this one because that explains the Lugo's solution. Please make sure that if you drop in, don't be scared to leave a message, so many people visit, but they leave without signing the guestbook, as long as your message is a nice one to Jay and giving him a bit of encouragement then you should not be scared to sign - Jay loves to read his messages, especially the other day, he was jumping up and down because he got a message from Hawaii - he thought that was cool.

That's it for now, Jay and I are going to go and have hopefully a hospital free weekend and we will see you all after Sunday (Australian time). OH don't forget we are a day ahead of America so our Friday is your Thursday.

Jay adding this bit: Some really great Aussies are here to get married this weekend, yep big fan of them - Nicole Kidman and Keith Urban - what great people they are. They are getting married in Sydney this weekend - and of course Nicole took the time for sick kids as she always does every time she is here in Australia (wonderful careing person).

MY POEM TO ALL MY WONDERFUL FRIENDS: Smiling is infectious - you catch it like the fluWhen 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.............(JAY)

Below a link to what I believe I am (A True Survivor)

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

ADD ON: Sorry some of my website pages are not appearing, darsly and I are on the trail (looking at the problem) and we hope to have it fixed soon - not sure why the pages are not coming up - if you are also having problems getting some of my pages to appear could you please let me know when you sign my guestbook - if we don't know there is a problem then we can't fix it. Thank you..

Don't forget to sign the guestbook I love to read my messages - Thank you.

Medical Schedule for MIBG

JAY'S (Smile Mail)

P.O. Box 2075

Fountain Gate 3805

Melbourne - Victoria - Australia




G'DAY MY FRIENDS.

I hope you have all been well since I saw you all last, and I wanted to say thank you so much for all coming to visit me, it means a lot to me knowing that you all care.

MEDICAL SCHEDULE FOR ME:
On Tuesday 20th June is my MIGB SCAN but before it is done this is what I have to do

On Saturday 17th/ Sunday 18th and Monday 19th I have to take this Solution 2x per day, I will explain it to you, it goes into orange juice so I can't taste it at all.

LUGO'S SOLUTION (Aqueous Iodine Solution BP)
This is a transparent brown liquid consisting of 10% part potassium iodide (k1) to 5% part iodine to 85% part of distilled water.

This is used as a CELL STAIN, making the CELL NUCLEI more visible, so basically when I have the MIBG SCAN what should not be there will show up brighter than anything else.

Tuesday 20th: Monash Medical Centre 10.30am given special injection, then I have to wait most the day and then at 4pm I am given one of the MIBG SCANS.

Wednesday 21st: Monash Medical Centre 8.30 am given more special stuff and more scans.

Thursday 22nd: Monash Medical Centre 8.30am given more special stuff and more scans.

Friday 22nd: Monash Medical Centre 8.30 am given more special stuff and the last of the scans (yippppppeeeeeeee).

Tuesday 27th: Monash Medical Centre to see my wonderful Oncology Doctor - Peter who will talk about my MIGB Scan results and also about my continual headaches. My Oncology Doctor is the best and he has watched me grow from the dying boy he diagnosed to the boy I am today and it is because of Peter I am alive today and we are hoping the MIBG SCANS will be wonderful results.

(I have a time bomb inside me) well that is how I explain it - it has to stay there - it sits on T-11 - T12 of my spine - it is inoperable. I am having this MIBG because I have to - not because I want to - I am monitered very closely, because we don't want the NEUROBLASTOMA monster to escape. I call it a time bomb because it is unpredictable - it could sit there and not explode - or it could. Hopefully and I am positive it will sit there until I am 99. So let's see - I have to wait until the 27th the find out (I am positive-strong-and I beleive all will be ok)

MEDICAL SCHEDULE FOR DARLSY MUM
Darlsy mum is in a lot of pain, and her surgery was cancelled for the second time (yes she is angry about that) and the excuse they made was unacceptable but there is nothing we can do about it. We do not have the new date yet for darlsy's surgery, but they are saying THURSDAY 29TH JUNE. I am trying real hard to take care of darlsy mum, as she also takes care of me, darlsy's is in 24/7 pain and it is difficult. We are on our own, it is just darlsy and me, I have my medical issues and darlsy has hers so it is hard for us but we try to take care of each other as we always have. Dalsy mum is having a very dangerous Spinal operation, it is a SPINAL FUSION but one which is not performed very often, she is having L4-5 S1 Fusion, so it is major and dangerous and I have to take care of darlsy after the operation.

MY PHOTO'S TODAY
The photo's I have up today are to say a big thankyou to my very special wonderful friend STACY. I received a gift in the mail from Stacy and WOW when I opened it, Stacy had sent me this JEFF GORDON test car and she also sent me the pass and the program from the Phoenix raceway the NASCAR race in April and all these COOL PHOTO'S she took. Stacy and I like the same things, although she is older she is like an Aunty to me and such a great friend. Stacy and I we are alike in so many ways. We both fight cancer (she has a different one from me) we both like NASCAR and PLANES and we are friends forever. I would love you all to visit my friend Stacy so just click this link: STACY DVORAK

MY POEM TO ALL MY WONDERFUL FRIENDS:
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.............(JAY)

SOME FRIENDS I WOULD LIKE YOU TO VISIT:
JOSEPH THOMPSON (NB)
BRIANSPAGE (all/jmml)
DALTON CAUSEY (Burkittls)
PRINCESS MIA
PRESTON (NB)

PLEASE ALSO REMEMBER AND VISIT MY ANGEL FRIENDS:
RYAN CONNOLLY (NB Angel)
KADIN
sweet NAVADA (NB)
EMILY (NB)

I Always had the following up on my old site - so please take the time to visit just click:

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

Thank you everyone, I have so many little sick friends, I just cant' mention them all at once. But each time I do a journal I will always mention someone.
Well I must go, please remember just because you are diagnosed with an illness dosn't mean you can't do things - it is a challenge given to us all and if we all give up then what is the point of the challenge. We may be sick, but we are not useless, we maybe sick but we are still able to do things, don't let anyone tell you that you can't do something, You CAN, you just have to be a bit stronger and a bit more tougher than you would be if you didn't have the illness. I can ride my bike because I CAN, I can walk my dog because I CAN, I can run and play because I CAN, just because we have an illness we should not be placed in the catagory of we can't do anything. CANcer spells CAN - we CAN do anything.
Anyway , I must go now, gotta go have some of that solution stuff, you all make sure you have a SMILE ON YOUR DILE (face) always, give some one a hug and tell them you love them each and everyday, by for now mates. BIG KOALA HUGS TO EVERYONE.

ADDED NOTE:
This is Jay's darlsy mum, I added this bit on, Jay did not know, but I wanted to tell you that Jay play's the tough guy, and yes he really is, but I know he is very scared and worried about having his MIBG SCAN next week , he wont tell you he is worried, but I know he is . This is also all of his school holidays taken up, so while all his mates are out doing great things for the holidays, Jay spends it at the hospital. This wonderful little boy of mine will never admit the fears he has but beleive me he has them. In my life I have never had a broken bone, never had any surgery in my life, but to see my boy who has been on this earth only 11 years - to see the SCARS which envelope his little body is just mind blowing - each time JAY takes off his shirt - the scars just stare at you, they keep reminding me of the most horrible times. Jay would never tell you this, but he will not take his shirt off in front of anyone, if he has to take off his shirt he goes and hides in the bedroom to do it , in summer he will not just wear bathers, he has to wear a shirt. I have told Jay he should be very proud of his scars (they are beautiful) just like him. I suppose he will grow to love them (I hope so). His little body is a battle field of SCARS, not just little ones but big ones which go around his entire body, down his back, across his neck and across his chest and one which is not related to cancer journey is the one on his right eye when he decided to go head first into the letter box. Anyway, as much as this little guy is an inspiration, and he gives lots of hope to others, he also is still going through his cancer journey and needs prayers and encouragement , so if you could all give him a little bit of encouragement it would be appreciated. Thank you.

GO THE "AUSSIES"
"Geoff Ogilvy" WON the "US GOLF OPEN"


BEFORE YOU LEAVE - PLEASE TAKE THE TIME TO SIGN THE GUESTBOOK

JAY LOVES TO KNOW YOU HAVE VISITED & LOVES TO READ YOUR MESSAGES

Wednesday 15th June 2006

JAY'S (Smile Mail)

P.O. Box 2075

Fountain Gate 3805

Melbourne - Victoria - Australia




G'DAY MY FRIENDS.

Sorry I have not been around, but so much has been happening since I was last here (there is always something going on in our life) never a dull moment.



MEDICAL ALERT -

My darlsy mum was suppose to have her SPINAL SURGERY today 15th June, but what did the hospital do to her again;

CANCELLED HER SURGERY AGAIN - CAN YOU BELIEVE IT - THEY CANCELLED IT.

Darlsy and I were all organized once again, I was all prepared that darlsy was going to have this big surgery and they did it again to her THEY RANG HER AND CANCELLED IT.

Darlsy got a phone call it was from the actual Surgeon who is going to do the surgery, he said to my darlsy I am really sorry to tell you this - but I am unable to do your surgery because I am going on holidays. Darlsy said WHAT!, are you joking and he said no, I can't do it because I am going on holidays. Darlsy said, so you are telling me, your holiday is more important than fixing my back - she was just told, sorry but I will be away. Darlsy EXPLODED, then she cried, then she EXPLODED again, and got on the phone to the Department Of Health. My darlsy is in so much pain, it is not fair, they have done this for the second time, just before she is to go and have it done and not fair on me. They have now told her that she has to wait another TWO WEEKS but doesn't know a date yet.

MEDICAL ALERT - MEDICAL ALERT:
This time it is for me. You know how I have been waiting a long time for my MIBG SCAN, well no more waiting.

My MIBG SCAN is on Tuesday 20th June, yes this Tuesday coming. We have not got all the details yet , but my Oncology doctor Peter Downie, he rang Darlsy and told her the special stuff came in and Jay's scan will be on Tuesday.

I know that I have to fast from 7.30am on Tuesday morning and go into MONASH MEDICAL CENTRE and they do something. Then I have to go back on Wednesday, and also on Thursday. Peter said to darlsy that he is sending her a schedule of what we have to do. So I suppose that is one good thing (I am finally having my MIBG SCAN).

WHAT'S BEEN HAPPENING:

Well last Saturday here in Australia, it was the COLDEST day in 27 years, it was so COLD, brrrrrrrrrrrrrrrr,
and darlsy was freezing (she hates the cold).

I have been doing really well in school and was Awarded by my peers at school the award of best Story Writer, Best Writer and also Best Drawer. I also go the best school report and darlsy is very proud of me.

There are only two days of school left before school holidays (yep that's right) on Friday we start school holidays and don't go back to school until July 3rd, so I am not sure what I will be doing on the holidays , but I do know I will probably be doing something with CAMP QUALITY.

My dog Snowflake is doing great, she is really fluffy at the moment because it is winter and she needs to keep warm, if we have her groomed she will get cold, even though she has a coat to wear.

I want to thank all my wonderful friends who continue to visit me and leave nice messages, it really cheers me up a lot.

I have been visiting a lot of my friends lately, and some of them are doing great and some are having a real tough time. I can't believe how many friends I have lost over the past few months, that is really hard, to lose friends, hoping they are going to get better and then lose them, that is when I think of how very lucky I am, and how it makes me more determined to keep fighting for not only myself but for all the sick kids and try very hard to find a cure.

NEUROBLASTOMA is a monster and it needs to be stopped, but the only way we can do that, is to raise money for research into trying to find a cure. Cure will not come straight away unfortunately, I wish it would so no more kids have to die, but if you out there can donate to NEUROBLASTOMA RESEARCH please do so, please help to find a cure for this horrible monster. If we had lots of money we would give it all to NEUROBLASTOMA RESEARCH but the only way Darlsy and I can help is to RAISE AWARENESS and find ways to raise money to give to NEUROBLASTOMA RESEARCH.

A PLEA FROM ME:

If there is anyone out there who is in a position to be fortunate enough to have money they can donate to NEUROBLASTOMA please think of the kids you will be helping, the lives you will save if you have the heart to donate. These are kids lives, my life, we have monsters inside us, we have not had a chance to live, please give so we can grow, so we can have a chance to grow older. All details to how to donate to NEUROBLASTOMA RESEARCH are on my site under Help Jay find a CURE. So if you can give just a little to finding a cure it would be appreciated.

Well I have to go now, I want to send lots of STRENGTH-COURAGE-DETERMINATION-HOPE AND INSPIRATION to all the little ones out there, all my little NB sick friends, you can do it, you just keep fighting and never give up.

OH: the photos at the top are of PORKA AND ME, and ME on the computer.

Still waiting for MIBG scan

JAY'S (Smile Mail)

P.O. Bos 2075

Fountain Gate 3805

Melbourne - Victoria - Australia




G'DAY.

Sorry it has been a few day's since I did a journal update, but time this week has just gone by really quickly and I have had so much to do seeing that I am in my last year of Primary School (Year 6) and I will be graduating soon I have had lots of home work to get done.

See the picture of the poster on Cycling, remember when I told you all that I got the Principals Award for the project I did! WELL that's the project I did and you can see the Principals Award stuck on it (the round circle) plus I got a certificate (I was proud of myself getting the award for my project).

The photo of me with the letter in my hand, I got that today from Camp Quality thanking me for coming to greet Vlastik last week and having fun with Giggle. I always have lots of fun on all the things I do with Camp Quality, they make kids like me happy and many other cancer kids.

My darlsy mum is now booked in to have her back operation on the 15th June (hopefully this time they wont ring up and cancel it) so we now only have a week to wait and she goes in to have a SPINAL FUSION of L4-L5-S1 which is a very scary operation but I know she will be ok and get through it and I will be there to take care of her after she has it done. Darlsy has taken care of me all the time I have been sick, it is my turn to take care of darlsy mum.

I have been doing a lot of things to raise the Awareness of NEUROBLASTOMA and doing my best to raise money to find a cure for this horrible illness and I have lots of things coming up which I will be doing. Please visit my HELP JAY page on my website and you can see how you can help me FIND A CURE FOR NEUROBLASTOMA. I have put things on there for the people in America, for the people in Australia you write to you local MP or to the Government and support us in Australia to get the Government to fund the Protocol for Neuroblastoma in Australia so the kids here do not have to find the funds to travel overseas to have the treatment. If we got the treatment here in Australia then families would not have to suffer the financial burden of having to give up so much, and have so much stress placed on them to find the money to go overseas. If we had the Protocol here then us Neuroblastoma families would not have so much stress. Having Cancer is stressful enough on families, but then to be told sorry we don't have the treatment for your illness and you have to go overseas for it put so much more stress on a family. Yes we have treatment here, but some treatments for Neuroblastoma we don't have, so they are the treatments we / I am fighting for to have here in Australia, and also making this illness known so people will give to the cause of trying to find a cure. When I tell people I have NEUROBLASTOMA, they just stare and say WHAT, not even adults know what NEUROBLASTOMA is, so that is why we need to be heard, we need to get the Awareness out there because this cancer is a silent killer a monster and is taking away too many innocent tiny lives. I am a lucky one, I don't know why I have survived Neuroblastoma, I do know I fought very hard to survive and it is not an easy cancer to survive, so I do consider myself a very lucky boy and now my goal in life is to STOP THIS CANCER and FIND A CURE.

When you go into my site and you see names UNDERLINED, please know that you can click that underlined name and it will take you somewhere (yes it will). Sorry my site is still not complete and my photo gallery will be not far away. Some of the underlined names are still not complete either but I wanted you to know that you will be able to click the name and it takes you to where it says for example on the JAYS FAV page, click the word CAMP QUALITY which is underlined and it will show you some of the fun things I have done with Camp Quality.

I would like you to visit two of my wonderful Australian friends please, my first friend is KAREN who lives not far from me and is a great friend to me and darlsy so please take the time to stop by and say G'day just click ; KAREN and my other Australian friend I would like you to visit is my friend Kira who has gone through a a lot in the past few weeks and a visit would cheer her up a lot so please click; kIRA

Well, I must go now, please know that I think of everyone of my sick friends each day and please keep up the fight and never give up. Keep a big smile on the dile always. Parents, please stay positive and never give up on your kids - they never give up so don't you ever give up. Stay strong and I send all my STRENGTH-COURAGE-DETERMINATION- HOPE AND INSPIRATION TO EVERYONE and please BELIEVE IN YOUR DREAMS.

OH - I am still waiting on my MIBG SCAN - yes that's right - still waiting. This scan is to be done because I have a dormant spot on T11-12 of my Spine (it is dormant and hopefully it will stay dormant for the rest of my life) but no guarantee's that it wont - as I have explained before, it is like living with a time bomb inside you. But I just have to get on with my life - which I do - and make the most of it. I have been given a second chance at life, there are not many kids who are given this chance, I am one of the lucky one's who have been given that second chance and I am not going to waste any of my life (I live it to the full). I am closely monitored and that is why I am having the MIBG SCAN just to make sure this spot has not increased in size. It can't be removed because it sits in an inoperable position so it just has to stay there and be good.

My headaches have been botherring me alot, I have not been home this week but was very sick a week ago and was home for 4 days with severe headaches. The scan came back ok on my brain (which was fantastic to know that there is nothing wrong with it)(lol) and great to know there is no NB disease to my brain, but the problem is still there as to the cause of my headaches, so the quest to find an answer to that is still continueing.

By for now - remember to live each day to the full, treasure every moment and everyone you have and give someone a HUG today and tell them you love them.

Jay - Vlastik - on the News

G'DAY WHAT A DAY:


I will be on the CHANNEL 9 NEWS tonight at 6pm (in Australia only)

What a morning - up at 5am and drove into Melbourne to where the SPIRIT of TASMANIA docks and greeted VLASTIK.

Who is VLASTIK:

Vlastik is a 67 years old very fit man who is doing a run for kids to raise money for Camp Quality. Vlastik started his run in Tasmania on the 24th May (my birthday) and he came across on the Spirit Of Tasmania this morning with his wife Jo and his dog Asta and his van which his wife will be driving while Vlastik does all the running.

See the photo at the top - that is os VLASTIK in the blue Camp Quality shirt and Me, he just got off the boat and I was there to meet him along with the Channel 9 News. What a fantastic man and so very fit, he is running from Tasmania to the top of Australia to Cape York and is hoping to raise $50,000 dollars for Camp Quality along the way.

You can also trek Vlastiks progress, you can go into my links and click onto camp quality which will take you to Vlastiks site, or you can just click onto
Vlastiksrunforkids
If this link does not work for you then type in : www.vlastiksrunforkids.bigblog.com.au
and please support Vlastik as he is supporting Camp Quality and kids with cancer.
Vlastik will be running a total of 5,510 kilometers which is a very long way for a 67 year old.

My other photos are they cool or what - see the little puppet, that is GIGGLE he is a remote controlled puppet who rides a bike and he talks as well and he is so cool, he is a cancer kid and supports Camp Quality. It was a very cold morning this morning in Melbourne for me and Giggle, but we got warm, Giggle rode his bike around everywhere and I just jumped up and down (it was 8 degrees) very cold but we all soon warmed up when Vlastik arrived.

If you get stuck and can't find the link to Camp Quality just click:
www.campquality.org.au and it will take you there, then you can see what camp quality is all about and why I love them so much.

Don't forget to watch me on the news tonight those who live in Australia - Channel 9 News at 6pm.