what now

did it change

2010-10-12T13:33:57Z

we saw the consutant yesterday and they said that the tumour had not grown or decreased in size. so it is good news or is it bad news im not sure

what fun

2010-10-04T18:10:11Z

Well we have been back from euro disney a week and we are just about recovered.

We meet lil man on sunday and he ran up to me with a massive grin on his face. That was the most amazing thing ever. He had a fansatic time loved every minute of it. He got lots of pictures with the charaters and signuaters.

The hotel they stayed in was wicked. If it was raining the chararters would come in and dance on the stairs and take photos with the children. The only thing we didn't get to see was the parade with him, but he had seen the parade the other days he was there.

The park was really acomadating with his needs and he had a badge to jump the queues.

i would recommend it to every of all ages.

euro disney

2010-09-22T17:53:45Z

lil man went to disney land in paris today for six days. His dad and i will be joining him on saturday and i cant wait.

This is positive thing to think about. I cant wait to go and have some fun. Life has been so unreal and out of control these last couple of months. This is going to be an experience for all of us.

I am slighty nervous about going because lil man has a hikman line in and i dont know if the rides will hurt it. Hopefully it will be fine and nothing will happen but i still worry. I am also nervous because he has just gone up in chemo and i dont him to be ill all of the trip.

IM so excited

why do people not understand

2010-09-08T13:46:19Z

Today i had a meeting with HR and my matron AND all i heared was blah blah blah blah.

They dont understand how stressful it can be trying to constrate at work when you know someone is dying.

Yes im going to have more mingraines and yes im going to have to take time off work with them.

They really dont understand how i feel and i try to keep them informed about lil mans condition but they dont want to know. The thing what gets me is when i first told them they said to me if i need any support all i have to do is ask, I WENT TO THEM FOR SUPPORT AND THEY TOLD ME TO GET BACK TO WORK.

Sorry this is a bit of a rant but i just needed to get it off my chest.

good mood

2010-09-07T12:43:55Z

im in such a positive mood today. hoping i can rub it off to my friends and family.

lil man went back to school yesterday and he loved. He is still on his chemo and is doing extremely well with this block.

He is so amazing. To look at him you would think he is a normal 8 year old. But if you pay attention to detail you can tell he is not well.

The doctors are amazed with how well he is doing they have increased his time scale to 12-16 months now. So thats something good at least.

ummmm

2010-08-10T18:17:33Z

Chemo is not nice this time round.

I think because last time he was having radio and steriods it did not hit him at all. this time it is making him really sick and not feeling to well.

I fell so useless. Now i know how simba feels when im not well.

other than being sick lil man is not doing to bad. he is still not walking to far but he tries to walk a little bit more every day. we cant ask for more really.

he is enjoying his summer holidays and wants to go back school soon.

im not doing to bad either apart from working all the time.

not good

2010-07-30T12:29:52Z

we were told yesturday that we will have less than a year with lil man if we are lucky.

NOW i know what the doctors say is only a guess but it just brings it real. They told us this news yesturday. Because they have had 4 child roughly the same age as lil man with the same type of tumor pass away within a year of the doctors finding the tumors.

I am finding it very hard to stay positive at the moment.

I know they dont always get it right. Once they found out my mum had secondery cancer of the spine they gave her less than 6months but she lived 6 years to the day.

With the good news from last week i thought JUST MAYBE we will be able to fight it.

Im not giving up HOPE but its very hard to stay positive.

WOOOOOW

2010-07-21T12:13:54Z

I cant believe i am writing this but here goes.

On monday we got the results of the mri scan.

Well the news we got, well lets just say it was the best news we could of hoped for and more.

The results showed that the brain tumor has redcued significantly in size. It has come of the spine which is brilliant news. The doctors have said 1 year of chemo, mri's every three months. but it all good at the moment.

I cant believe it!!!!!!

Its amazing and im in shock

sleep is a good thing

2010-07-08T11:16:05Z

I have managed to get some sleep last night.. WOOW. I finished work yesturday and fell asleep by chance. today is a good day. Dont fell like the world is on my shoulders. Talked to a special person yesturday and that was very helpful, made me releaise a few things that need to be done. Life some times just gets on top of me and i cant take it but i say to myself to take life witha pinch of salt and thats what i did. sleep always help me think to because i can calm down.

well thats me for today will log on tomorrow and see how to tomorrow is

washing machine HEAD

2010-07-07T08:32:50Z

My brain is about to explode. i have to many things to think about at the moment and its all getting on top of me. i moved house 3/7/10, that was extremely hard work. trying to get things sorted out so i can find everything again is a nightmare.

What does not help is i dont feel well and cant take any more time off work. so going into work not feeling 100% is hard enough but i work in a hospital so its enen harder to look after someone else.

On the 15/7 lil man has his MRI scan to see if the chemo and radio therapy has done any thing to the brain tumor. If it has not done anything then we will find out what is the next step.

Just to make things a lil worse i cant sleep at the moment either which is not helping things at all. i cant think straight.