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!

Monday 22nd September 2008

I am feeling good at the moment!

Tomorrow I am going in to hospital to have a general anaesthetic for a lumbar puncture which is where the doctor takes some spinal fluid and gives me some chemo into my spine. It is all over quite quickly and doesn't really hurt very much. I have to be nil by mouth though and be in hospital for 8.30 am. The worst bit is waiting until I go in to theatre because you just don't know when it will be. I hope I will be first on the list and then I don't have to wait too long. When I wake up, I have to lie down for at least an hour so that the chemo doesn't give me a massive headache. I usually watch a movie so Mummy has bought me a new one to take in called Game Plan.

I hope I will see some of my friends on the ward tomorrow, it is much better if there are people there you know. Maybe Lulu is in for an LP too or Ruby? Who knows.

Wednesday 17th September

This is me and my friends at the sponsored swimathon - I think we raised loads of money.

I feel much much better!

I have been to school this morning and really enjoyed it. I had spaghetti bolognaise for lunch which was yummy and we did science (my favourite), maths and english. I think Wednesdays are my favourite days.

All my year have gone to play netball matches this afternoon so I am going to watch Emily play in a hockey match at Oakham. She is really excited because she is in the A team.

I think tomorrow will be a good day too!!! Yippeee!!!

Tuesday 16th September 2008

I still feel poorly and my skin hurts too. I have not been to school since Thursday because I have felt too poorly. Never mind, I hope I will be better tomorrow.

Thursday 11th September

My first week back at school was great. Being in year 5 is sooooo cool! I have a lovely teacher called Mrs Hayden and she is really kind. We are in the senior building now and have to be very grown up!
I AM ON STEROIDS AND FEEL HORRIBLE!!! My legs hurt, my head hurts, my face is all red and my eyes are sore. I feel really tired and totally rubbish.
I am doing my homework which is really hard and I don't want to do it.
I could do with some letters from Postpals to cheer me up.
French homework to do now but I don't think I will go to school in the morning because I feel YUK!
No colours because I don't feel like it.

We're Back!!!

This is me and Emily with my cousins Kianna and Lauren on holiday in Devon

We have just come home from just over 2 weeks away and had a really fun holiday. It rained, it was windy, it was cold and I think I remember the sun came out once but we still did loads. We body boarded, sailed, swam, crabbed, fished, cooked mussels on the beach again and even had a picnic in the woods yesterday where we had to collect the wood to make a fire and then cooked sausages, ribs and burgers followed by a game of kick the can!

I have felt well most of the time apart from when I was on steroids and my legs and ankles have not hurt too much. My blood results were a bit low last week so I have not had any chemo at all since last Tuesday so Mummy hasn't had to wake me up to take pills so that has been really good. I will have another blood test tomorrow to see what I will be on this week.

Only one more week before I go back to school and in to a new class and the senior part of the school. I am very excited and Emily says my teacher is really nice. Emily starts her new school on Friday and I am going to really miss her.

Busy, Busy, Busy

Emily and I are sailing at Rutland Water this week ready for our holiday in Devon next week. It has been really fun so far and a good wind so we are learning loads. Apart from a few aches and pains, I feel really well. I had to pop in to hospital yesterday afternoon because I have conjuntivitus but other than that I am fine.

Vincristine and steroids tomorrow yuk, yuk, yuk but hopefully it won't be too bad for my holiday.

The really exciting news is that my uncle and aunt and my cousins are on their way over from Hawaii to have a holiday with us in Devon. We have not seen Uncle Simon and Kianna (my cousin) for 2½ years and we have not seen Auntie Lisa, Brandon and Lauren (my other cousins) for 5 years!!!!!!!!!!!!!! We are all sooooooooo excited!!!!!!!!! I hope the sun shines for them.