Tuesday 9th December 2008

This is me and my school friends at the school disco. It was such fun and I danced with some of the boys too!!!
I have been on steroids and felt really yuk but now I have a cough and cold and feel even more yuk. I feel like I have low hb but apparently I don't. My legs hurt too. I went to school today but only for a couple of hours and I could hardly lift my head off the desk. Daddy picked me up and then when Mummy came home we went on a walk to get some fresh air with Digby. We went through the fields and down by the brook and Digby was really funny jumping in and out of the brook.
My arm is getting more and more better but one of the stitches from inside which was meant to dissolve has popped out and is really annoying. Nurse Julie tried to cut it off yesterday but it won't come off so I am just being careful with it. I can move my arm quite well but it is still sore.
We went to the ward 27 christmas party on Sunday and I saw lots of friends but most of us were on steroids so we were not very sociable. I wore my angel outfit and won a prize for most creative outfit! Thank you to all the nurses who made it such a good party.
I am meant to be going to Lapland on Friday but I have decided not to go because my arm is still too sore. We get to go on husky sleigh rides and snow motorbike thingys but I just wouldn't want to because I might bump my arm so I am not going. I didn't go last year either because I was poorly so I hope to be able to go next year.
Special message: Hello Rick, Jacquie and Mike!

Friday 28th November 2008

Rachel and Isla sent me this balloon to cheer me up and it really worked - thank you very much!

Stitches Out!

O.M.G! I was so anxious but it all went well and I was home that night with steri strips and a bandage on my arm feeling very sorry for myself! My nurse Julie had a good look at it on Tuesday and she was very happy that all the wounds were healing nicely and there is no sign of infection. Yippeeeee! I am really proud of myself because last night I took the bandage off and slept with nothing on it at all. Today I am going to school with nothing on it so wish me luck!!!

I have not had any chemo for two weeks because when I cut my arm I lost a lot of blood and my hb and neutrophils dropped alot and the chemo makes them low too so Dr Madi decided it was best not to have it for a while or until my bloods are better. This week the hb is climbing again but my neutrophils are still quite low - 0.6, so no chemo again. It is quite good actually because I have to take the chemo after my evening meal and at least an hour after milky things and I really like to have a glass of milk before bed so usually Mummy has to wake me up when she goes to bed and I don't like to take pills when I am sleepy.

I am so excited today because we have our school disco this afternoon. I am wearing my new Ted Baker dress and Mummy bought me some purple sparkly nail varnish after I had my stitches out because I was so brave so I have painted my nails too. I can't wait!!!

Ems is singing in a concert tonight at Oakham so we are all going to watch her. I hope she sings well! Then on Sunday I have a birthday party to go to which is a Mamma Mia party and I llllllooooovvvvveeee Mamma Mia. I'll tell you all about it next week.

We decided this week that if I hadn't had seizures, broken my arm or put my other arm through the window that actually I would have been quite fine with just Leukaemia so far! Better be careful for the next year and then I will be able to ride and swim and run and dance and play and everything else I miss with my friends.

Oh yes, just remembered........................... clinic on Wednesday for vin and christine and yuk yuk yuk steroids for 5 days. At least it will be over for Christmas!

Monday 17th November 2008

I am back home again!

Well, I have had my first ride in an ambulance now and had the blue flashing lights on too! It was very exciting, shame I don't remember it!!!

What happened was, I put my arm through the glass door by the front door just as we were about to leave to go to my ballet show but oh deary me no, I was not going to the ballet show any more, I told Mummy to call 999 and then we had to wait and wait and wait for the paramedics to come and then wait and wait and wait again for the ambulance to come to take me into A & E! There was blood and glass all over the floor and my arm was hanging off in pieces - yuuuuukkkk!!!

Anyway, on Friday morning I was put to sleep for an operation to sew my arm back together again and it took 2½ hours and I now have 30 stitches in 2 wounds and another wound which is glued together. The doctors have put my arm in half a plaster so I can't stretch the stitches but the good thing is it is my left arm this time so I can still do some things with my right.

I had to stay in hospital since Thursday night to have lots of IV antibiotics and to make sure my arm was ok. I had lots of fun though because my friend Lucy was there too because she had a bit of a temperature. Neither of us felt really ill so it meant we could just hang out together and watch movies or play in the playroom. We had a big curry on Saturday night and watched Strictly and X Factor. Lucy and I had a real laugh singing Angels into snooker cues and dancing like Ruth!

My arm feels much better now and I am having the stitches out next Monday. I am neutropaenic and have very low hb so Mummy has to keep a very close eye on me and no chemo until next week when hopefully my bloods will have recovered.

Monday 10th November 2008

Lots of people ask me what it is like when I am on steroids so I wrote a poem.

STEROIDS

My life is annoying

Everyone tries to help

It doesn't make it better

Especially when

on the fourth week

they kick in again!

My bones start to hurt

I am starting to moan

My Mum tells me stop

and my Dad tells me NO!

I say to them 'no way,

I am not taking them,

They make me feel poorly

don't try me again.'

It comes to the time

I have days off school

Mums friends all come round

oh what a to do

I can't interact

Mum says

'say hello'

and that was that

Now they've all gone

I go to my room

To let out the anger

I paint a balloon

But Mum has a problem

I didn't paint it on there

It was onto my nails

In bright orangey pear

She said to me now

what was that for?

I say, it's the fashion

She said 'Oh, tell me more!'

I go back downstairs

and talk to the dog

I do have my own life

but then, maybe not.

By Jemima Sellicks age 9

Saturday 8th November 2008

Steroids week - feel yuk!
MRI scan results were clear.
EEG on Monday.

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!