Living Life to the full the best we can
JAY'S (Smile Mail)
P.O. BOX 2075
FOUNTAIN GATE 3805
MELBOURNE - VICTORIA - AUSTRALIA
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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posted by *JAY* @ 4:42 pm
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