Jay's Journal Archive April2006

G'day it's JAY

THURSDAY 20TH APRIL 06: Sorry I have not been around, Monday was a holiday here and then I have had to go to school. So far I have made it Tuesday - Wednesday - Thursday all day at school without having to call Darlsy to come pick me up. I have been sad that I lost another little friend to this horrible cancer Neuroblastoma, such a horrible monster to take little ones lives away. I still do not understand why it did not take me - I am no stronger nor am I any tougher than any other child battling Neuroblastoma. Just in a few months I have lost 3 friends to Neuroblastoma (NOT FAIR). I have had a few headaches, very annoying, but I am not letting them get to me and continuing to do the things I like to do. On Monday 24th I go to the Royal Childrens Hospital to see the Neurologist - I know my scan results will be good ones - now these results are only to do with the headaches these are not the ones to do with the spot on my spine at T-11 - T12. I am still waiting to have my MIBG SCAN, that will scan my entire body to find if there are any of those horrible little NB Monsters buggs lerking around anywhere - they are hard ones to find - but we will find them and stomp on them I am sure of that. I am sorry if I have not visited everyone lately, darlsy and I have to move house and we have stuff everywhere in boxes and I am sleeping on the floor so I have not been able to get to the computer much to visit (BUT I WILL)we just have to move house first and get organised again. To all my wonderful friends out there - YOU ARE THE BEST - thank you all for being my friend. Remember everyone that in life you just never no what is around the corner so please make the most of each second of everyday (no time for winging and complaining) put a SMILE ON THE DILE (face) and enjoy life even when it is tough sometimes. Treasure all the times you have with your family and friends and give them all a big hug (A HUG A DAY) it dosn't hurt and it dons't cost anything to tell someone you care - you watch a persons face light up when you tell them you care and you love them - really makes a difference and it makes a difference in a sick childs life. Have you noticed that it is always us sick kids cheering up all the adults - true - so CHEER UP ADULTS if us sick kids can laugh and smile then why can't you - see there is that word again CAN't - no such word - it spells CAN. Well I must go - got a bit of homework to do - please think of little NAVADA and her parents tomorrow and remember little sweet NAVADA as the little princess she was. (JAY)

MONDAY 17TH APRIL 06: I am feeling a little sad right now - my sweet little NB friend sweet little NAVADA became a little ANGEL Easter eve. I was sure she was doing ok, I was so shocked to hear the news both darlsy and me. Sweet little NAVADA you were a strong - brave - tough little girl - you were tiny and I love you and I miss you. www.caringbridge.org/visit/navadaharleighlzlotnicki

SUNDAY 16TH APRIL 06: Easter Sunday, I woke up early, I could not sleep very well coz I knew the Easter Bunny was coming (I think I got a bit of sleep) anyway, I woke early to see a trail of eggs from my room all the way around the house out to the back yard and front yard - the trail led to some great goodies (I even got a Geff Gordon Nascar with Easter eggs). It was a great day (NO HEADACHE - BUT REAL BAD LEG AND BACK PAIN) - I took some of my medicine and eventually the pain went away. The weather was great here, no rain for the Easter Bunny - we have been getting a bit of rain but not for the Easter Bunny it was a beautiful day. Later in the afternoon darlsy took me to the skate park with my scooter to do some jumps - I love to go to the skate park - my leg was aching alot but I really wanted to go and have some fun which I did because PAIN IS TEMPORARY -QUITTING IS FOREVER . I hope everyone had a good Easter - all my little friends who are a bit sick right now I hope the Easter Bunny cheered you up. Some of my little sick friends who were not doing so good are now kickin cancers butt big time and defied the odds like I did - yep it can be done don't you ever forget that, so I am very proud of all my friends who are showing that YEP US KIDS ARE TOUGHER THAN CANCER and you CAN do it. I have a few hospital appointments coming up which I will let you know about soon, but until then I am being a kid and doing what kids should be doing and that is living life to the full. (JAY)

SATURDAY 15th 06: (LATE NIGHT IN AUSTRALIA) I will be back tomorrow to update properly coz the EASTER BUNNY comes here soon tonight in Australia. I wanted everyone to know that the GOOD FRIDAY ROYAL CHILDRENS HOSPITAL APPEAL raised a record amount of TEN POINT TWO MILLION DOLLARS which goes towards new equipment and research. Well I have to go - HAPPY EASTER EVERYONE I HOPE THE EASTER BUNNY COMES TO YOU ALL - HE MIGHT GET A BIT DIRTY HERE DOWN UNDER TONIGHT COZ IT HAS BEEN RAINING A LOT AND VERY MUDDY, so the poor Easter Bunny will need a good wash when he finishes his rounds. I had bad headaches today and have been laying down most the day, I do hope I will feel better tomorrow for EASTER. (JAY)

FRIDAY 14th APRIL 06: TODAY HERE IN MELBOURNE IS NOT ONLY - GOOD FRIDAY - IT IS ALSO A VERY BIG DAY FOR THE ROYAL CHILDRENS HOSPITAL - EACH YEAR WE HAVE A HUGE FUND RAISER ON GOOD FRIDAY TO RAISE AS MUCH MONEY AS POSSIBLE TO GO TO HELP IMPROVE THE HOSPITAL WITH LIFE SAVING EQUIPMENT AND TO SAVE THE LIVES OF MANY CHILDREN - THE ROYAL CHILDRENS HOSPITAL IS ONE OF THE BEST HOSPITALS IN THE WORLD AND IT IS THEIR DAY TODAY AND IT IS TIME TO GIVE - GIVE THAT THEY MAY GROW - MILLIONS WERE RAISED LAST YEAR FOR THE GOOD FRIDAY APPEAL - THIS YEAR THEY ARE AIMING FOR A RECORD AMOUNT - THOUSANDS OF CHILDREN ARE SAVED EACH YEAR BY THE WONDERFUL PEOPLE AT THE CHILDRENS HOSPITAL, NOT ONLY KIDS WITH CANCER BUT OTHER ILLNESS AND IT IS TIME TO DIG DEEP AND GIVE BACK. LAST YEAR SOME OF THE MONEY RAISED WAS USED TO BUY A NEW MIGB SCAN AND MRI SCAN MACHINE WHICH I GOT TO GO IN LAST TUESDAY - WITH OUT THIS LIFE SAVING EQUIPMENT PEOPLE LIKE ME WOULD NOT GET A SECOND CHANCE AT LIFE. THERE IS SO MUCH EQUIPMENT AT THE HOSPITAL WHICH SAVED MY LIFE AND WITHOUT THE GENEROUSITY OF PEOPLE DONATING MONEY TO THE APPEAL SO THE HOSPITAL CAN BUY THE EQUIPMENT A LOT OF KIDS INCLUDING ME WOULD NOT BE HERE TODAY. THE GOOD FRIDAY APPEAL RUNS ALL DAY AND ALL NIGHT WITH LOTS OF THNGS HAPPENING - CHANNEL 7 IN MELBOURNE TELIVISE THE APPEAL ON TV ALL DAY - (JAY)

THURSDAY 13th APRIL 06: What a day I had today, I think it was a great day for me - well I know it was a great day for me. I had lots of energy and got my fast legs of (coz I am a real good runner) because we had our SCHOOL SPORTS day today and I did so well and got into the Inter School sports academy. **I came FIRST PLACE in the 100m HURDLES **I came FIRST PLACE in the 100m FLAT RUN **I came FIRST PLACE in the HIGH JUMP **I came SECOND PLACE in the LONG JUMP **I came THIRD PLACE in the 800m RUN I was very proud of myself today, seeing that I have a realy bad pain in my leg today and had to battle an illness I am still faster than kids who have never had a terminal illness and that makes me feel real good and really tells me that I CAN DO ANYTHING. Illness should not hold you back, you must have the determination in life to achieve and believe you can to things even though you have it a bit tougher than the kid who has not got an illness. I love sport and that helps, and it helps that I have a darlsy mum who is a personal fitness trainer and she has kept me fit all througout my illness. I believe that keeping fit does make a difference to your recovery and also a difference in how your body tolerates the treatment. So to all my sick friends out there, I am a good example of what you can achieve, so let me give you lots of my strength and courage and determination so you to have the will to fight the fight and do the things you want to do in life. I am so proud of myself today, the past few weeks i have had lots of bad headaches, leg pain, back pain, but I was determined not to let it get me - I took control again and I WON - so to can all of you - some of you are younger but I know you are stronger than your parents may think you are. Parents you too must take control and never give up on anything GIVING UP IS NOT AN OPTION - GIVING IN IS NOT AN OPTION - If I can do it anyone can do it - I suppose it is too a matter of who wants it MORE - well I DO - I want to live to be 100. I have not got my results yet of my MRI SCAN, that will be on the 24th so I will let you know then. Well it is EASTER LONG WEEKEND here in Australia, we are not going away anywhere - we still have to pack and find a house to live in. But, I am sure we will be doing some exciting stuff over the weekend so I will let you know about that. Hope you have been enjoying my photos, I put some pictures up of my sports day today - I am in the green shirt RUNNING - HIGH JUMP AND MY RIBBONS. My physed teacher Mr. Hunter was really proud of me today as well, so GUESS WHAT! I have the BIGGEST OF BIGGEST SMILES ON MY DILES TODAY and that is what I want all you to do this weekend, make sure you keep the SMILES ON THE DILES AND BELIEVE IN YOURSELVES NO MATTER HOW TOUGH THINGS GET. (JAY)

TUESDAY 11th APRIL 06: I had a bit of a sleep in and woke feeling a bit better than yesterday (the headaches had gone). Got ready and then darsly & I drove into Melbourne to the Royal Childrens hospital. It is a nice day today, the sun is shining & the sky in blue. We arrived at the hospital (now lets find a parking spot) a very difficult thing to do (around and around and around we go - no parks to be found - it is a huge hospital with alot of people and parking spots are very hard to find. After doing the rounds about 6 times darlsy had an idea - she drove to the man at the pay gate and said please there has to be somewhere that we can park my son has an appointment in 10 minutes - the man was real nice and he created a car park for us right next to his little pay booth. Up to the second floor to the MRI Department - they were running very late so in the waiting room was the Starlight games machine and video player so I watched BEETHOVEN and played some cool games. An hour after my appointment time it was my turn. I got to go in the brand new MRI Machine - real cool the room set out with colored sparkly lights on the roof it glowed in the dark and while have the MRI SCAN I watched THE SIMPSONS and darlsy was sitting in a chair right beside me with headphones on. I had headphones on aswell coz the machine is really loud, especially the very last scan it was the LOUDEST and the machine was bumping and shaking it was real cool. I didn't get any photo's this time of my MRI because they have different rules at this hospital, but darlsy took some of me in the waiting room on the Starlight machine. The scan was completed but they could not give me any results they were not aloud to so darlsy and I have to wait until the 24th April that is when I go back to the NEUROLOGIST to find out the results. (So, yep we have to wait). Atleast I now have the MRI SCAN done and out of the way, now I have to wait to have the MIBG SCAN and we are still waiting on the date for that one. I know my results will be good ones - I am a SURVIVOR and will live to be 80 plus. Thank you to all my great friends who wished me well today, all your thoughts were with me and helped me get through the SCAN - it dosn't hurt - it is just a noisey machine - it's just like lying in bed. To all the sick ones out there, don't be affraid of anything, you are all very strong and tough and you will get through it just as I have - be positive always and keep a smile on the dile and believe and you will achieve. Must go now I am a bit tired, it has been a very long day, remember you CAN achieve whatever you put your mind to CANcer spells CAN and we CAN do anything.(JAY)

MONDAY 10th APRIL 06 : After a weekend of packing, today was a school day. I felt ok this morning when I woke and went off to school. But as the day went on I was not feeling the best and had the worst headache ever, so school rang darsly and she came to pick me up. I had some medicine to try to get rid of the headache and I laid in bed for the day. Tomorrow Tuesday 11th I will be going to the Royal Childrens Hospital for my MRI SCAN. I hope all my friends are feeling good today and I send all my strength and courage to you all. Remember, just because you have an illness dosn't mean you can't do anything (of course you CAN). See you all tomorrow (JAY)

SATURDAY 8th APRIL 06 : As I have had to start a new web site I have not had time to put on all my journal from WAY back - I had over 42,000 visitors on my old site and over 2,000 guestbook entries which I have kept every single one of. So I have to start again on this site. My darlsy is making me a proper site so I can put all my journal back so I don't have to explain things, but for now this one will have to do. If you click on my photo's there are stories to each one you can comment, the first two photos have links so please check them out. MEDICAL STUFF: Well when I left off on the last site I had just seen the NEUROLOGIST (finally) and now on APRIL 11th Which is Tuesday in Australia I have my MRI SCAN, then I go back to the NEUROLOGIST ON 24th April hopefully for some great results. I am still waiting for the MIBG SCAN date, so I can't tell you when that is yet. I made an entire week of school, is that cool or what, I have not lasted an entire week for ages. I did have 3 bad headaches this week but I was determined to stay at school. I even on Friday had a game of FOOTY, it was our school interschool sports and we WON. It has been raining the past few days and a little cold out so looks like we are staring to get the cold weather (HATE THE COLD). I hope all my little sick friends are fighting hard and all have a big SMILE ON YOUR DILES (face) keep it going and kick cancers butt right out the window. Dont forget to tell you mum and dads that staying positive and strong is the best way of getting through the tough times and always keeping big smiles on those faces.I will start to come visit some more friends again very soon, just had a lot of horrible things happening and one of them is that we have to move, so I am not real happy about that. Don't worry, I will be around to visit you all soon. REMEMBER: PAIN IS TEMPORARY QUITTING IS FOREVER - don't you ever give up. (JAY)

FRIDAY 7th APRIL 2006 - THIS IS JAY'S DARLSY MUM - I WISH TO THANK ALL THE WONDERFUL FRIENDS OUT THERE WHO HAVE SUPPORTED JAY IN HIS VERY HARD WEEK - THE ENCOURAGEING WORDS MEAN SO VERY MUCH NOT ONLY TO JAY BUT ALSO MYSELF - WE KNOW WHO ARE OUR FRIENDS AND THERE ARE MANY OF THEM AND I THANK YOU ALL. WE ARE TRYING TO GET THROUGH A PRETTY ROUGH PATCH AT THE MOMENT WITH HAVING TO MOVE FROM THE HOUSE WE HAVE LIVED IN FOR 7 YEARS SO IT HAS BEEN PRETTY HARD ON JAY, SO SOME ENCOURAGEING WORDS FOR JAY WOULD BE APPRECIATED AS HE GOES TO HAVE HIS MRI SCAN ON 11TH APRIL - I KNOW HE IS FEELING A BIT DOWN AT THE MOMENT BUT STILL HE LOVES TO GO CHEER ALL HIS FRIENDS ON - SO IF YOU COULD ALL LIFT HIM UP A BIT THANT WOULD BE GREAT - JAY WILL BE BACK SOON TO START DOING HIS UPDATES (I PROMISE YOU THAT). MAKE SURE YOU LOOK AT HIS PICTURES WHICH HE HAS LOVEINGLY ADDED COMMENTS TO IN HIS OWN LITTLE WAY.

I HAVE NEUROBLASTOMA IT DOSN'T HAVE ME

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WELCOME TO JAYS JOURNEY: My name is JAY, I am 10 years old and will be 11 years old on 24th May 2006. WOW - They said I would never make it, but look at me now. My life started as a healthy baby boy, but as time went on I started to feel a bit sick. My darlsy mum (I call my mum darlsy) she took me to many doctors because she new there was something wrong with me, but not one doctor would listen and they kept sending me home saying to my darlsy that she was a neurotic mother and that I just had a little cold. Well my body hurt a lot, I cried a lot, but no one would listen. Other things started to happen to me, I would sleep very long hours (14-15 hours), I would sweat a lot (too much), I had high tempertures. Darlsy kept taking me to doctors, they kept saying I just had a little cold. My darsly new that there was something bad wrong. Then one day my left left arm and left leg would not work and I had a little bump on my back which grew twice as big in just a few hours, I kept bumping into things and then I was limp in my darlsy arms with a tempeture of 43 degrees, so my darlsy rushed me to the doctor and she shouted (Dont you dare tell me there is nothing wrong with my son). I was rushed to the hospital where I was diagnosed with pneumonia - I was put on a drip for three days but I was not getting better and my darlsy kept saying please look at the lump on my back, but no one would look at it. I was getting worse and my darlsy screemed the hospital down demanding someone look at the lump on my back. Finally a surgeon came in and said I was to have a biopsy to see what it was. Hours later the doctor came to my darsly and said "I am very sorry", they did not explain anything but sent me to a bigger hospital. That is when my darlsy was then told I had NEUROBLASTOMA. She did not know what that was but was told it is a very aggressive, rare malignant cancer of the sympathetic nervous system and my tumor had started in my chest and invaded my entrie body, wrapping itself around my aorta, spinal cord, adrenal glands, abbutted my heart, kidneys, went all throughout my abdomen and back threw my spine and out my back. Neuroblastoma is a very painful aggressive cancer and it is a monster, but I was not going to let it get me.Thought clinically to be a Ganglioneuroma (which is a tumor composed of nerve cells, it was then diagnosed NEUROBLASTOMA, so I actually have two types of cancer NEUROBLASTOMA & GANGLIONEUROMA because not only the majority of tumor cells I have are Neuroblastoma but also I have rare scattered fully developed ganglionic cells. So I was diagnosed NEUROBLASTOMA stage 4 and the N-MYC ongogene study revealed that becasue samples were contaminated then it was reported as falsy having only 1 copy of the gene where in fact there were more copies. There were so many misdiagnosis until finally all the results were verified properly and was given unfavorable prognositc indicators & given a 10% chance of survival & 2-3 months to live. I was put onto all these horrible toxic drugs - Cyclophosphamide - Cytoxin - Doxorubicin - Adrimycin - VP16 - Cinsplatin - Vincristine & horrible steroids which made me fat - Urine Catecholomines - lumbar punctures - spinal taps - bone marrow apirations - many surgeries which have left me with very large scars (reminders of a monster inside me). My Journey with cancer has taken up my entire life, but it has taught me a lot of things and one is that you never give up, you fight the fight, and you make the most of every single day and you treasure every moment. PAIN is TEMPORARY - QUITTING is FOREVER, and I am not a quitter I am a SURVIVOR.

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My life has been tough, it has been more than the average healthy boy. I have grown up in hospitals listening to doctor jargan & have become very smart at knowing when they are telling the truth or telling a few lies. Growing up in the world of cancer has I suppose made me a better person (that sounds strange) but being sick has taught me to be very tough and determined. I would like my life just to be normal, but I don't know what normal is because I have never had a normal life. My life, my days are consumed with hospital and doctor appointments. I am nearly 11 years old, an age doctors said I would never make it to (well I say NEVER SAY NEVER), I made it although I still have a mass which sits on my SPINE at T-11 & T-12 I have to get on with my life. The mass which sits there is in an inoperaable postion (meaning it cannot be removed it is far to dangerous to try to remove it) so it sits there just like having a time bomb inside me not knowing if it will explode. I can't think about what might happen, I have to get on with my life and enjoy life. You only have one life and you must make the most of it. Hopefully the mass could sit there for the rest of my life or it could decide to explode, so I make the most of the life I have right mow and have fun doing what 10 year old boys do. I am waiting on NEUROLOGIST appointment about my headaches, and also other things will be discussed regarding the mass on my spine. I have been waiting a long time now for the Neurologist appointment, hopefully it will be pushed up from the 8th August but just have to wait and see. I get alot of headaches which keeps me a way from school alot, so to find out the problem sooner than later would be great. **DARLSY DID IT - a bit of push and shove - I got to see the NEUROLOGIST at the Royal Childrens Hospital on Monday 25th March 06. 25th MARCH - NEUROLOGIST was concerned about the headaches and concerned because of my history of NEUROBLASTOMA, and also concerned it maybe, but would like to rule out PAPILLEDEMA which is swelling of the optil disc!, so an MRI SCAN as been booked for me to have a MRI of the Brain on the 11th APRIL 06. I am still waiting to here when the MIBG SCAN which identifies any Neuroblastoma (BUT YOU KNOW WHAT) even though I have that bit on T11 - T12 which is inoperable, I know and believe, and so does darlsy believes all my scans will be ok, because we are always positive. 3rd APRIL 06 - The past few days have not been very good - I have been sad that people have said some very nasty things about me and my darlsy - but we know we are good people and all I want is to give cheer and hope to all my sick friends. I will not be brought down by people who say nasty untrue things. Please know that I am thinking of you all and when I feel a bit better I will come to visit you all soon. I have made some wonderful friends who believe in me and my darlsy. I have had a bit of a bug the past few days as well, I have a bad cough, I know I will bounce back. PLEASE EVERYONE I HOPE YOU STILL HAVE THOSE BIG SMILES ON THE DILES AND STAY POSITIVE AND STRONG. *BELIEVE IN YOUR DREAMS *DON'T FOCUS ON WHAT YOU CAN'T DO - THINK ABOUT WHAT YOU CAN DO *IF CHILDREN HAVE THE ABILITY TO IGNORE ODDS & PERCENTAGES - THEN MAYBE WE CAN ALL LEARN FROM THEM. WHEN YOU THINK ABOUT IT - WHAT OTHER CHANCE IS THERE BUT TO HOPE!!! - WE HAVE TWO OPTIONS - MEDICALLY & EMOTIONALLY - GIVE UP - OR - FIGHT LIKE HELL.

"JAY"