JAY is back - 22nd May 2006

Monday 22nd May 2006:
JAY AND BRON ARE BACK BIGGER AND BETTER THAN EVER.
G'day it's JAY

This is Jay's darlsy mum trying to catch up on a month which is missing.

As most of you know - Jay had another web site which was cruely sabotaged, and also we recieved very cruel, nasty, threatening, harrassing emails for the past 7 months which we could not take anymore and that is why we had to do something and close the other site and try to get another one up and running.

Jay was very destressed over the cruel and nasty things which were being said about him and also about myself and we hope the person who has been doing it are able to live with themselves and know that you did not win - because we are back bigger and better than ever and will continue Jay's cause and that is to get the awareness out there about NEUROBLASTOMA and raise money for trying to find a cure.

Jay's other site had over 98,000 Visitors and over 5 thousands guest book entries from wonderful kind people - all these entries have been kept and when time permits all the Journal entries from the las web site will be put into the ARCHIVE section of this site.
I hope you all enjoy Jay's new site - I am sorry it is not fully completed yet but it wont be long until it is.

You can sign the guestbook but please know that your entry will not appear immediately because I have a security check on all the entries which I go through and decide whether of not the entry is apporiate to allow into Jays guestbook, once the check has been made then you will be able to see you entry as long it is not of a mean, and threatening nature.
We have been off line and away from the computer because of the very nasty things which were happening which affected Jay and myself very much. I would like you all to think before you write comments in the guestbook and remember it is for an 11 year old boy.
Jays new site will be what it has always meant to be and that is full of strength-courage-determination-hope and inspiration to others. Our goals are the same and that is to get the awareness out there about NEUROBLASTOMA and about the horrible cancer it is and also to fight for other children affected by Neuroblastoma.

Jays site is not one for negativity or nasty comments, Jays site will always be uplifting and full of inspirational words from Jay and myself to others who have to go through living with a child with cancer and also to let others know that it is not an easy path to travel - cancer changes your life forever and my life with Jay has certainly changed and will never be the same again.
Jay is one of the lucky one's - I feel very lucky as his mother to have such a wonderful inspirational determined young man who had to fight very hard for his life - but he is a survivor and he will continue to be and with us getting the awareness out there about NEUROBLASTOMA we are hoping all the other little ones will also be survivors.

I have a list of the people who know of this new site - I have only given it to our true friends - people we know who we can trust.
WE HAVE MISSED YOU ALL
It is only 2 days until my very special boy turns a big 11 years old - yes on the 24th May he is 11 - and they said he would never make it - well he did and proved all those doctors wrong.
If you could leave some very kind words for Jay on his birthday in his guestbook it would be very much appreciated as he has had a bad last month with everything which has been going on and some uplifting messages would be fantastic. We have had to move house which we are in and settled into our new home now.
On the 24th April Jay went back to the Royal children's Hospital to get his MRI SCAN result to the brain - the scan came back clear which was a wonderful result - but still have no answers as to the cause of the headaches which he continues to get.
Jay has had many day's off school due to him being sick and very bad headaches. On 3rd May I was called by the school, Jay was very sick and bad headaches so I had to go get him. Thursday 4th he seemed a bit better so I sent him off to school only to get another phone call that he was not well, so had to go get him. Friday 5th May still not well, the headaches the main problem today. In the afternoon he seemed to get better and was playing. Saturday 6th May not a good day at all - a very sick little boy - vomiting - he had 5 headaches during the day - he was very yellow looking a look I did not like because that is what he looked like when he was first diagnosed and he had very high temperatures. I took him down to the local GP, he said maybe just a 24hour bug, I was not convinced of that. I took Jay back home and gave him some medicine and into bed. He continued to vomit and was looking even more yellow. He slept all day and all night - waking only to have a vomit or a headache would wake him. Sunday 7th May, not much better, he wanted get up and play but his little body would not allow him, he really looked sickly and his headaches continued throughout the day. A bit later in the afternoon he was feeling a little better. I rang the doctors to make an appointment for him on Monday to have some blood tests done.

Monday 8th May - 10-45 took Jay down to the doctors to get some blood test done he had: *FBE

*E/LFTS - URINE & CREATININE
*ESR - URINE M/C/S C-REATIVE
*PROTEIN - IRON STUDIES
*WEIGHT: 40kg
*HEIGHT: 154CM
He stayed home for the rest of the day.

Tuesday 9th May he was feeling better and went off to school and lasted the day and the same with Wednesday 10th - only took him out of school for an our to go and get the blood test results. Doctor say's all the blood tests were fine (hard to believe) when he was so yellow, but anyway he said they were all fine.

Today as I said is Monday the 22nd May, only 2 days before Jays 11th birthday and he is very much looking forward to it. Jay went off to school this morning (in the horrible Aussie rain) yes it is getting cold and rainy here down under (we are not cold weather people).
I am still waiting on the date for Jay's MIBG SCAN, the scan of all his body to make sure there is not Neuroblastoma anywhere.

My news is that I have to go into Hospital on 29th May to have my back operation (I have spondylosis - scoliosis and degenerative bone disease) and have been waiting on a back operation for 2 years - I live each day in 24 hour a day pain and received a phone call 3 days ago letting me know my back operation will be on 29th May only one week away. Jay will be taken care of by a carer for 5-6 days whilst I am in hospital, but after that I am not sure what I will do as I will be out of action for 4 months, I am having a spinal fusion.
Jay is looking forward to some fun activities with CAMP QUALITY coming up very soon and I am sure he will let you all know about that.
Well that's it for now - it is great to be back and we have missed all of our friends very much.
Please know that Jay wants you all to still keep those SMILES ON THE DILES stay positive and strong and never give up.

"JAY & DARLSY MUM"