Thursday 30th October 2008

Well, I have had the MRI and that was horrible. They had to give me some contrast to see different things on the scan so I had my port needle left in in the morning but then they said I couldn't have it in because the magnet of the MRI would pull it out. So Katie had to take that out and then a doctor had to put a cannula in my hand and I really really hate that, it hurt so much because they didn't let the numbing cream work for long enough! Anyway, before all that I saw a very nice man who specialises in eyes and he said that I do not have a bleed in my eye (which the optician thought I did) but that I do need to wear glasses for looking at the board at school and watching TV so we are going today to see if we can find some nice glasses for me. (tee hee hee!!!) I will put a picture on the blog of me in the glasses when I get them.

I know alot of post pals read my blog too so I would like to say thank you very much to everyone who sends me and Emily cards, letters and parcels. We love it when Daddy comes home from work with post for us, it is so exciting!

Sunday 26th October 2008

Happy Half Term!

We are having a very good half term and have done loads of fab things already and we have another week to go! We went to school for two mornings for sports and fun and that was really fun but I was got tired very quickly and my bones hurt too. On Monday I went to hospital to have a check by the doctor and on Tuesday I had an appointment with the neurologist. He was a very nice man but soooooooo late! My appointment was at 2.30pm and he didn't turn up until 4.45pm!!!!! He did lots of funny tests on me like follow his finger with my eyes and touching my face with my eyes closed and I had to tell him which side he was touching (got that a bit wrong though!) he also made me stand up and shut my eyes but I wobbled so much I had to open them again, you should try it, it is really hard. He decided that I had had a little seizure and the best thing to do was to have another MRI and a sleep deprived EEG. That means I have to go to bed very late and get up very early so I am deprived of sleep and then have the EEG and hopefully fall asleep. He said you get better results that way. He also wants me to have my eyes tested by the hospital optician so we are waiting now for all these appointments to come through.

Otherwise, my blood test was fine on Tuesday and my kidney function has got better so back up to 100% chemo this week. My ankles hurt at the moment so I am taking codeine for that. Next week we are having a quiet week but on Friday my godmother Wendy is taking me out with her son Stan - yippee!!!

MONDAY 20th OCTOBER 2008

We are worried about what happened to me last week and think it may have been a mini seizure so my consultant asked me to pop in to the hospital today for a thorough check up. We did that and have to go back again tomorrow to see the neurologist and wait for an MRI scan. When I had the big seizure last year the MRI scan showed a small lesion on my brain and the EEG showed some abnormal activity so we need to see if anything has changed since then.

I am really really fed up about it though because it is Emily's birthday on Wednesday and I don't want to mess up the plans for that. We are having a friend each for a sleep over tomorrow and then we are going with Hattie, Max, Tilly, Arabella, Guy, Auntie Nic Nocs and Philly Philpot to see High School Musical 3!!!!!!!!!! We are so excited (well, the girls are! Guy is not so keen but Max wants to go!!!) Then Auntie Nic Nocs has invited us back for a swim at her house. It is going to be such a good birthday and I AM NOT GOING TO HOSPITAL!

I just wanted to say hi to Mia, I hope the MRD was good news and that you are ok. x

Wednesday 15th October 2008

Something really weird happened at school today. I was playing upstairs with my friends one minute and then I don't know what happened but I found myself outside in the playground and I had missed lunch and didn't know where I had been or what I had been doing. It was very scary. Mummy picked me up from school early and we spoke to the hospital about it. It was this time last year that I had a brain seizure so I don't know if that happened again today. We are going to ask a few people at school tomorrow to see if we can piece it all together but I don't like what happened at all. The hospital said to make sure someone is with me all the time so I am never on my own just in case anything else happens. I just want to get on with my life and be normal.

I have just finished steroids for 5 days but it wasn't anywhere near as bad as last time. I still felt pretty horrid but I was able to go out and about. We went to the horse of the year show on Sunday and that was great fun. I particularly liked the pony club games, they were so funny.

It is half term on Friday for 2 weeks, can't wait.

Tuesday 7th October 2008

Here is Digby helping me get ready for school this morning!

I am so so happy - I got player of the week for the netball match last week and I won this trophy to keep for the week. How coooooooool is that?!?!?! I am playing in another match this week.

I am working really hard at school and enjoying being in Year 5. We are learning about nicotine and alcohol in science so I took my CD player in to school to play a song - do you know it? it is by Rolf Harris and he sings all about these people Nick Oteen and Al K Hol!

Two of my friends from hospital are very poorly at the moment. Alex is 4 and he is at my school. He had a brain tumour which has come back so he has gone to USA to have it cut out again and have some treatment. Alex is such fun so I hope he will be better soon. My other friend Ruby is really poorly too. She has neuroblastoma and she is not getting any better so she is not having any more treatment. She is a very good friend to me and has helped me alot with my medicines. It makes me very sad when my friends are ill. Another friend Bethany is getting much better though. She had ALL and had lots of treatment but then she relapsed so she has had lots more treatment but she is finishing really really soon.

Bad News now: I am having some vin and christine tomorrow at hospital and you know what that means don't you????? Steroids!!!!! Yuk, Yuk, Yuk. I am not very pleased because we are going to a party at the weekend and I will not feel very happy and Mummy is taking us to the horse of the year show on sunday so I hope I feel ok for that.

Emily wants me to say she is very excited because it is her birthday in 15 days and she is going to be 11!