MIMA'S STORY

Saturday 9th July

2011-07-09T14:50:00.002+01:00

Hello Everyone,
I thought I should update you and let you know how everthing is going. I have started the summer holidays (exams are over) and started my book. I have had a busy time already and I have a busy time ahead too.
Book
Well I have to say that it is a lot more difficult then I first thought it would be. You have to plan it write it perfectly, choose wether you are aiming it at adults or children, do it as a diary or a reference book and then write it well enough that people want to buy it and then find the time to do it all. So a lot more work than I expected, but thats alright because I enjoy work! I am just writing a load of things down at thwe moment and then I will put it all together nicely on the computer. Daddy was actually viewing a house yesterday and met a lady who knew someone who would be willing to help me with getting it together so I can't wait to get in touch with her soon. So all a bit stressfull but also enjoyable!
Exams
I kept trying to update you all during my exams and I kept starting an update but never finishing them, so I am sorry about that.
Anyway, I am very proud of myself for how well I did in my exams. I got above average out of the whole year in everything....apart from maths which I knew I wouldn't do great in but I tried as hard as I could. In everthing else my hard work payed off though becuase I came top of the class in History and English, 2nd in Latin and Geography, and 4th in French which was my lowest score, but I can't remember about my other subjects where I came but it was no lower than 4th!
Then I went and got a prize at speech day in History!!! Yippi!!!
Summer Holidays
We went to take that on Wednesday at Wemberly which was AMAZING! I loved it, we did a day of shopping and then to take that. I thought it was amazing. Although I do have to say that Robbie must be on something because he had so much energy and was a bit mad....but thats just between me and you!
I have started Physio, at Nufield hospital with a lovely lady called Annusha, because of my knee pains.
I am then going to fun week back at Stoneygate on Monday Wednesday and Friday and Mummy said she might take me into town on Monday afterwards and then to the Physio.
Tomorrow I am really excited for because I am doing th race for life in Leicester, although I am struggling to find a pink skirt! I will hopefully get some photos and post them on here soon!
I think I will be doing a lot of resting afterwards though because I will struggle with my knee and probably let my friends down a bit because I havn't done much training :(

So thats what I have been up to!
Love Mima xxxx <3
HEHE i love changing the colour on these!! xx

Tuesday 31st May 2011

2011-05-31T08:04:00.003+01:00

Hello everybody,

My update that I promised is here! Well....where to start? I am in Mallorca here on holiday as you know with Mummy and Emily (left Daddy at home!) It's lovely and warm and we are just heading off down to the beach today. Although.... there is a down side to this wonderful holiday because no one can treat themselves too much...I have had to bring ALL my school books, which has filled my suitcase and hardly left me any room to take clothes so I am left here revising 6 hours a day (on beach instead of swimming and making sandcastles) with two outfits for a week! It really is the life (not). Lets just hope it pays of in the exams!

I have been really well overall, had a couple of bumps and bruises at the worst. I am getting fitter and I have managed to get into the A Team tennis at my new school (Oakham) which I am really proud of because it is my favourite sport of the year.

At school there was a Short Story Competition. I wrote about one of my experiences in hospital, Mummy said it was not the right thing to do because it was really sad and I could write about all the lovely things we have done, like our weekend in Paris, and describe them really well. But I thought I could describe my time in hospital even more well and in lots of detail. I worked really hard on it and made my whole class cry becuase it was so sad (don't know whether this is a good thing or a bad thing!) and managed to win the prize in my class. It is now going forward to be judged out of my whole year which is about 5 other stories of extremely high standard compared to mine because I am in one of the bottom classes. I will know how well I have done at the end of term.

In the meantime, because I love writing so much, I thought I would write a book for people on the ward, and people who would like to know more about Leukaemia and what it's like to have it with a glossary of all the drugs and side effects of them in the back.

I will be selling it for £5.99 and 75% of it will go to Ward 27 Leicester Royal Infirmary so Rachel can improve the ward. I will be writing it in the summer and I am just getting ideas together at the moment.

If I have missed anything just say and I will update you on that too.

Love Mima xx

Monday 30th May 2011

2011-05-30T20:14:00.002+01:00

Hi everybody,

Sorry I haven't written in so long. I thought it would be nice to write now, as I haven't forgotten about my blog but I just saw it on my Grandpa's desktop in Mallorca (which is where I am now). I thought I would check to see if anyone still remembered me and that is when I saw that Max and Katty had written a Happy Birthday letter for me! I thought you deserved to hear from me and to hear what I am doing. Well, I am just off to bed, so I will tell you tomorrow what is going on in Mima Sellicks's world.

Wednesday 19th May 2010

2010-05-19T14:29:00.000+01:00

DID I TELL YOU I HAVE CHICKEN POX!!!

Friday 16th April 2010

2010-04-16T12:37:00.002+01:00

The good news is that I have not relapsed!

But I have got something called ITP, Immune Thrombocytopenic Purpura, which basically means that my immune system is eating my healthy platelets by mistake thinking that they are bad viral cells so my platelets are very low which is why I am bruising so easily. This is very very rare and only 4 in 100,000 children get it so I am really quite special!

But, I have to be very careful now and not do any contact sports or sports things where I could bang my head (cos I could bleed in my brain) so guess what that means - yup, you got it, no riding again until I am better.

I have to have another blood test on Monday and see what has happened to my blood since Thursday. Then I will have another blood test a few days later and then a few days after that. That's all very well, but as I don't have a port anymore it means that I have to have a needle stuck in to me (OOOOOWWWWW) and as my platelets are low it means I get a big bruise and I bleed alot (aaarrrggghhh!)

I have had enough and I think I am driving Mummy mad because I am not very good at being careful and not being active. We are meant to be on holiday in Jersey where we were going surfing and everything but we are stuck in boring Billesdon with nothing to do. Anyway, the flight was cancelled to Jersey because of the volcano so we would still be in boring Billesdon.

I think I will .....................................hmmmmmmm, what shall I do?????????

Wednesday 14th April 2010

2010-04-14T18:44:00.002+01:00

Well, today has been a bit of an odd day really. We have been packing to go to Jersey for a few days and had to pop in to hospital for a routine monthly appointment this morning. Dr Madi did not like the look of all my bruises all over my legs again so he asked Auntie Pauline to take some blood from me to see what was going on. Then we went out for tea to meet my godmother Auntie Jax and Mummy's godson Archie and Daisy too when Dr Madi called Mummy to say that my platelets are very low so he would like me to go in for a bone marrow aspirate tomorrow morning!

Not happy at all - that means we can't go to Jersey after all so we have just put all our clothes away again!

Dr Madi wants to check to see if there is any sign of leukaemia in my bone marrow but I feel fine. Last time I lost my appetite, I was very skinny and pale and couldn't walk up the stairs. Well I feel just fine so who knows what it is.

I will tell you when we know.

Otherwise back to horrid general anaesthetic in the morning - yuk!

SUNDAY 7TH FEBRUARY 2010

2010-02-07T11:50:00.003Z

HELLO EVERYONE!!!

We had a fab time in Barbados and the sunshine, sand and sea made us all feel so much better. Before we went, my face was really really sore and the skin was soooo dry, it was driving me mad but after a week in Barbados it was so much better. I used a cream called Vitamin E gel by Jo Malone (soooo soooo expensive) but it works so well it is worth every penny (mummy says!) It is all because my immune system is starting to work again and that affects your skin apparently. (I know Ruby's face is sore at the moment, so try this cream, it works wonders - much better than the ½% hydorcortisone the docs gave me).

I had my first clinic appointment since my treatement finished when we came back from Barbados and we were quite worried. While we were on holiday I had started to get quite tired and had spotted some bruises again so I was worried it was the Leukaemia coming back. Mummy and Daddy were very worried too and so when I went to clinic I had a blood test - but don't forget, I dont have a port any more so I had to have a needle stuck in to my arm. Actually it didnt really hurt! Anyway, the results showed that I was fine and had obviously just been enjoying the swimming and running around too much!

My next appointment is on Wednesday and so far, I have been feeling great. I have been to school every day, for the whole day (apart from one afternoon when I felt sick) so I am really proud of myself. My tummy is still not behaving too well, so I have a few problems there but I can manage that.

I took the entrance exam for a new school a couple of weeks ago. I was really scared because I have missed so much school but guess what..................................I got in, they want me!!! So that means that in September, Emily and I will be at the same school again, Yippeeeeee!!!

I just want to say to anyone who reads my blog who has leukaemia now, it really is ok..............I know cos I have done it.

I will write again when I have some news!

Have fun everyone

Love Mima xxx

Tuesday 22nd December 2009

2009-12-22T19:58:00.007Z

Delivering Christmas cards

Ready for the Frost Ball

In Lapland

Well, I have been really rather busy!

I have been to Lapland and had an absolutely fantastic time (it would have been better if Mummy was there though)

I have been to my first ever Ball and had an absolutely fantastic time at that too (it would not have been as good if Mummy was there though!)

I have had my port out (I am glad Mummy was there)

I have finished school for 2009 and we are all getting ready for Christmas.

I had a swine flu injection which made me have swine flu. I had a temperature and everything ached, I felt sick and had a sore throat. It was horrible.

I have to tell you though, I am really very unhappy at the moment. I have a really bad cough and cold and Mummy won't let me go anywhere. I was invited to the cinema and she said NO, I am meant to be at the Panto tonight but she said NO and then I am meant to be going to the theatre on Christmas eve with all my cousins but so far she has said NO NO NO.

I do understand because we are going to Barbados on 28th December and I have to be better for that otherwise she will say NO to Barbados!!!

Anyway, I would just like to say

Merry Christmas everyone and Happy New Year!

Love Mima x

Thursday 26th November 2009

2009-11-26T07:51:00.002Z

Great Ormond Street ......................................

Well, this is what happened: Mummy, Daddy and I went to London on the train which was great fun (I love going on the train!) and guess what? My Auntie Tan was on the train too so we sat with her! Then we went to Buckingham Palace to see the changing of the guard. It was a really sunny day and we climbed up on to the island monument thingy outside the palace so we could see what was going on. I really loved seeing the police on the horses and guess what...................when I grow up, I would like to be a mounted policewoman. I met one of the horses called Zena and she lived at New Scotland Yard. She was a beautiful grey and didn't mind the traffic and people at all.

Anyway, then we went to a yum scrum restaurant called cafe caldesi and I had a fantastically delicious steak with broccoli and little roasties, yummmmmmmmy!

Anyway, then we went to Great Ormond Street and I began to feel a bit funny and I was worried about what they might do to me. We had to wait for a few minutes and there were lots of children there. A very nice doctor spoke to me and Mummy and Daddy about what had been happening and about our family and my treatment and then we saw Professor Cross. Basically, she thinks that because she sees loads and loads of children who have epilepsy she has a pretty good idea of what is or isnt epilepsy and from what I told her about my seizures she thought the first one was perhaps an epileptic seizure but the other two weren't. She said with all the medicines I had had to take over the last 2½ years, I was bound to feel a bit funny sometimes and I might feel funny again but she didn't think it was epilepsy. In fact she thought the last one I had sounded more like a mild migraine! So Mummy gave her my horrrrrrrible epilepsy pills and said she never wanted to see them again! Then Professor Cross said she had a picture of my brain on her computer and it looked alright to her, then she said she was pleased to say that I was perfectly normal!!!

We all came out of the hospital very happy, well I was, but Mummy and Daddy both said that they had a fly in their eye because their eyes were watering!!!

Then because we were all so happy Daddy said we could do a bit of shopping but I didn't really find anything so we went back to the station and Mummy and Daddy had TWO glasses of champagne and I had a lemonade and a bowl of yummy scrummy ice cream.

So that was two weeks ago. Oh yes, then we went to see Dr Madi the day after Great Ormond Street and he said I had a pretty good chance of not getting Leukaemia again and he agreed that I didn't have to take any more pills (after I said oh please Dr Madi!). So now I have had a full week of no pills and I think I feel quite good!

My hair is growing back, a bit patchy, but it is growing. My ankles and knees are still achey but I think my bounce is coming back to my legs a bit.

Have a nice weekend everyone, I know we will!!!!!!!!!!!!!!

Thursday 12th November 2009

2009-11-12T19:52:00.003Z

THE BEST NEWS WE HAVE HAD IN 2½ YEARS

Well, we were meant to wait until my appointment with Dr Madi next Wednesday but Mummy and Daddy couldn't wait any longer so Mummy phoned the ward today to get the results from my end of treatment bone marrow aspirate.

The results were fantastic - I am in complete remission and there was no sign of ALL in my bone marrow at all!!!

We have been dancing around the kitchen and everyone is crying!!! What a mess!!! I felt a bit weird when everyone was crying apart from me, I thought everyone should be happy but apparently they are!!

Night night

Love Mima x

I am still going to keep my blog though!!

2009-11-09T18:11:00.000Z

Yippee I have finished x x

2009-11-09T18:08:00.000Z

Monday 2nd November

2009-11-02T08:30:00.003Z

2 days to go YIPPEE! We are going off to great Ormond street Hospital on 17th of November and hopefully they will take me off these horrible Keppra drugs.

I am also go to have all my hair chopped off so it has a propper chance to grow.......

Sunday 1st November 09

2009-11-02T08:28:00.002Z

3 days to go! this is not real......

Saturday 31st October 09

2009-10-31T09:10:00.003Z

Only three days to go....... BUT bad news my hair is coming out in handfuls it's horrible i was crying my eyes out last night. Those STUPID Keppra pills i have to take they are doing it i HATE them..........

Friday 30th October 09

2009-10-31T09:08:00.001Z

Only four days to go ........ this cant be happening

Thursday 29th October 09

2009-10-31T09:07:00.000Z

Five days to go !!!!!! this is so exciting.....

Wednesday 28th October 09

2009-10-31T09:05:00.001Z

Only six days to go!!! OMG

Tuesday 27th october

2009-10-31T09:04:00.001Z

Only seven days to go!!!

Monday 26th October

2009-10-27T06:37:00.002Z

eight days to go and counting!!!!

can't wait!

Sun 25th October

2009-10-25T08:07:00.000Z

9 Days to go !!!!!

Sat 24th October

2009-10-25T08:05:00.002Z

10 days to go!!!

Okay here is my half term...... Monday: My best friend Chelsea from riding and dancing is coming to play and I am really excited cus she has never been to my house before. Tues: I am going to Olivia Hazeltons house to play with her and I can see her baby brother Jack. Wed: I am going out with my great aunt Gillie if my blood test on Tues is okay. Thurs: I am having Sophia Furber on a sleepover and we are going on a pony day at debbie varleys. Fri; .... nothing Sat: Dancing in the village, dog agility ,riding. Sun: Jonses 4 lunch!!!!!

Fri 23rd October

2009-10-24T18:00:00.000+01:00

eleven days to go!!!!!

Thursday 22nd October 2009

2009-10-21T22:56:00.001+01:00

12 DAYS TO GO!!!

Happy Birthday Emily!!!

Sunday 18th October 2009

2009-10-05T16:03:00.004+01:00

ONLY 16 DAYS TO GO UNTIL I FINISH TREATMENT!!!

We are all getting very excited and counting down the days now until I finish treatment for Leukaemia. I have had my last lumbar puncture for ITMTX, my last vin and christine was last Wednesday. I am finishing my last steroids tonight and then it will just be a final lumbar puncture and bone marrow aspirate on November 3rd with daily chemo, weekly chemo and antibiotics every weekend up until then.

I have to tell you though that I have been back in to hospital for a couple of days because I had another seizure at school on Thursday two weeks ago. The Neurologist has decided to put me on some anti-seizure tablets now and I have to have them for 2 years!!!!!!(They called it epilepsy) I don't mind though if it means I don't have any more seizures. The last one really frightened me and I was at school, so even worse.

I am now counting down every day and we are going out for lunch today and I am really excited. I am going to ring Daddy at 12.00 because that is the time we should be meeting him at the restuarant.

P.S just because I have a name for all my seizures it doesn't mean that you should treat me any differently than before I was diagnosed with epilepsy. I am still just the same old Mima and you shouldn't be scared of me.

love mima xxx

THE BEST SUMMER EVER!

2009-08-31T20:17:00.006+01:00

DON'T MISS THE ARTICLE AT THE TOP OF THE PAGE ABOUT THE RESEARCH JEMIMA INVITES HAS NOW FUNDED - THANK YOU EVERYONE WHO HAS CONTRIBUTED TO THE TWO YEARS OF FUNDRAISING!

I have had the best summer ever!

We have done so many fun things, I am not sure you or I have the time to think about them all!!!

We had a fab 2 week holiday in Devon with the Wheelers, we sailed, body boarded, swam, bbq'd, kayaked, ate ice creams, fish and devon cream teas ............................. it was all just amazing.

When we came home we did alot of riding and more sailing and then last week we went to Holkham beach for the day and rode on the beach which was absolutely amazing!!!

I go back to school this Thursday and I cannot believe the summer is over. I am really looking forward to seeing all my friends again and starting in year 6!

I hope you have all had a good summer too.

Tuesday 21st July

2009-07-21T18:34:00.004+01:00

Hello everyone.

This is my new passport photo. Did you know, you are not allowed to smile or show your teeth in a passport photo! My passport ran out in May and we are not planning on going anywhere but just in case we feel like flying off somewhere when my treatment is over, we thought we had better be organised and have a passport!

I am slowly recovering from steroids....and can't wait until we all go down to Dartmouth. I am so looking forward to going body boarding and am especially looking forward to going to the FBI to have another amazing steak like they cooked me last time.

Tomorrow I am meeting up with a few friends and we are going to The Wistow Maze for the day, I can't wait. As always, I have a busy schedule for the holidays. I am going to The Wistow Maze tomorrow, helping at my local riding stables on Thursday for the day and to see my fave pony Nicky Noo Noo, going to my BFF's house on Friday to do some girly stuff!!! Saturday I am going back to the riding stables again, Sunday granny and papa were taking me and Em out for lunch (but we can't go because of Swine Flu, so Granny will be cooking for us at home whilst Mummy and Daddy play golf - boooorrring!) and that's only one of my weeks!!! I still have play dates to arrange with Vicky, Faffy, Freya and Fi Fi. I am getting bored of all this swine flu business because I can hardly go anywhere. I can't go to the cinema, swimming pool, restaurants, the supermarket, into town or even near Daddy now because he has two employees with swine flu. I wonder if I will get it? Let's hope not. I am counting down till end of treatment only 3 more steroids!!!

Mummy on the other hand (I think) is getting a bit fed up of the summer holidays already....(because of all the rain).....but is coping well with mine and Emily's late night summer holiday moods!!!

Oh yes, I nearly forgot something else we are doing is having the Jemma Effersons over for dinner on Friday night and that will be really good fun.

MONDAY 13TH JULY 2009

2009-07-13T22:24:00.003+01:00

This is me at Twin Lakes on the school trip!

I am having such fun so far this holiday and have been feeling pretty good. I am off to clinic on Wednesday for steroids and some vin and christine but we have to go to the ward to lower the risk of catching swine flu. My family are all very worried about swine flu because if I get it it would be very bad news. Anyway, no time to worry about that, I am busy having a fun holiday!!!

Thursday 18th June 2009

2009-06-18T20:08:00.003+01:00

I am just going to tell you something which is really annoying me:

I would really really really like to go on a school trip and my choir are going to France for a few days next week but I can't go because I have Leukaemia and have to take too many pills and stuff like that but now something else has happened. My year are going on a school trip to Twin Lakes next week and because of my funny head thingys and because I have had a few absence episodes since my last ITMTX two weeks ago, it means that Mummy has to come with me on our trip. It just is not fair and I really want to go on my own and be with my friends.

I am angry! Oh yes, and I am on steroids!

Monday 15th June 2009

2009-06-15T09:49:00.002+01:00

Two years ago today I started my treatment!

All I remember is feeling very poorly all the time. I had to have my bloods taken every 6 hours and a horrid pink medicine to protect my kidneys every 8 hours, I had a drip constantly for 2 weeks and had a general anaesthetic two days in a row and then once a week for the first month and loads of vin and christine, the horrible asparagus and mayonnaise jab in my leg and so much dexamethasone (steroids) I was starving and angry all the time! What a horrible time that was but at least we can forget all that now.

I am really well at the moment and enjoying lots of school, parties, rounders matches, and a lot of tennis in our garden! We have had our school exams and I did ok so that's good. We had a drama workshop for the parents last week and I read a poem about Friends which I loved and we are doing it again for some other children from a different school who are visiting us this week.

We have sports day on Friday but I won't be doing much because I can't really run very well as it hurts my ankles but it is a fun day anyway. Then we have our school fete which is just about the best day all year and I have a stall with some friends which will be great fun.

Sorry if I don't write very often these days but don't think it is because I am not well, it is because I am very well!!!

Wednesday 20th May 2009

2009-05-20T21:28:00.003+01:00

Busy, Busy, Busy

I am so sorry I have not updated my blog for a month but I have been really well and very busy!

Sadly, I am on steroids again now which started today so I will probably be a bit grumpy and hurting and feeling horrid by tomorrow afternoon. Never mind, only 5 more lots to do!

Now then, if you can, you must sponsor my Daddy's friend Willie. He is a bit mad and he is doing a big, big challenge called the three peaks challenge. www.justgiving.co.uk/williecarrjemimainvites

Thank you very much!

We went to see Dr Madi today and it was really funny because we go in to his office and he asks how I have been and usually I say well I broke my arm or put it through the window or my ankles are bad or I fell off a horse or something like that but today I just said I am very well thank you and he said that was very good to hear and it was the first time in 2 years I had said that! Do you know, we were in and out of the hospital having seen Dr Madi, had a full check up, had chemo and had my needle taken out, collected my new drugs, had a cup of tea all within 45 minutes! Record time!!!

Friday 24th April 2009

2009-04-24T09:30:00.000+01:00

Yuk - steroids. I feel horrible.

Thursday 16th April 2009

2009-04-16T10:56:00.004+01:00

This is me and my bff Georgia when we went climbing with Guy and Eddie. Don't laugh at our hats!!!

I have been feeling pretty good for the last couple of weeks, apart from a bad cold and cough, cough, cough, cough, cough - that is what I have been doing, all day and all night!

Now, what have I been up to????????????? Well, I have been riding, cycling, sailing, climbing, dog walking, sleep over with friends, pottery painting and out to the cinema (twice). I had a fab birthday and Easter was pretty scrummy too!

Back to school on Monday and I can't wait to see all my friends. I am hoping to have a go at guitar lessons this term too.

Tuesday 24th March 2009

2009-03-24T19:28:00.003Z

IT'S MY BIRTHDAY TOMORROW!!!!

I AM SOOOOOOOOO EXCITED!!!

Unfortunately, I am going to clinic in the morning for my monthly IV chemo and steroids - great birthday present, thanks very much!!!

Then I am going to school and taking a cake with me to have with all my friends. I am sooooooo excited (did I already tell you that!!!)

Then Daddy and Mummy are going to take me out for tea to my favourite place Zizzi, in Market Harborough (because Emily is going on a sleepover (not fair, I wanted her to be at home on my birthday)).

I don't know how I am going to get to sleep tonight because I am soooooo excited (I think I may have already said that!)

Night Night!!! Next time I update my blog I will be 10!

2009-03-20T19:52:00.002Z

OK I'M BACK

I feel so much better now and ........................guess what..................I HAVE COMPLETED A FULL WEEK AT SCHOOL FOR THE FIRST TIME SINCE 14TH JUNE 2007!!!!!!!!!!!!

My toe is healing really well and I don't feel sick, my hair is only coming out a little bit, my ankles don't hurt, my tummy isn't sore, um, is there anything else??? NO because I feel ok!!!

I played in a school netball match on Wednesday and I scored the one and only goal for Stoneygate - yippee! I loved drama this week and Mr Starbuck has asked me to do a solo in the production in the summer, I am sooooooo pleased about that.

If you have nothing to do tomorrow, come along to Ratcliffe College Spring Fair between 11am and 3pm and I will see you there. It is in aid of Jemima Invites and another charity and sounds like it has some really good fun stalls. I have made a cake to sell and Mummy and I are looking after the Jemima Invites table so come and say hello.

Now, don't forget it is Mother's Day on Sunday. I have made something for Mummy but I can't tell you what because she will read this. We are all going to my great auntie Gillie's house to celebrate Mother's Day and alot of birthdays. It is my uncle, great uncle, cousin, granny and my birthday all on Wednesday so we all celebrate together.

BBBYYYEEE! xxx

Friday 13th March 2009

2009-03-13T09:31:00.003Z

I still don't feel very well. The doctors gave me some oral antibiotics when I came home from hospital but they have made me so sick that I can't do anything. I am really fed up with feeling poorly now. Mummy spoke to the doctor at hospital yesterday and he said I could stop taking the antibiotics because they were making me so sick. I hope I will begin to feel a bit better today. I have just had a bit of breakfast which is the first time I have eaten in ages. Sorry no colours, but I don't feel like it.

Tuesday 10th March 2009

2009-03-10T18:51:00.001Z

I am home again now after my LP. My back is a little bit sore but otherwise I am fine. I hope to go to school for a short day tomorrow but we will see in the morning. Night night, I am shattered!!!

Monday 9th March 2009

2009-03-09T22:06:00.004Z

I just got home 9pm but am going back to hospital tomorrow for a general anaesthetic for a lumber puncture and some chemo into my spine. I don't like this one as it may be what makes me have brain seizures! I have to take 2 different kinds of antibiotics for the next 5 days because I still feel grotty. Night night, I am tired!

SATURDAY 7th March 2009

2009-03-08T18:27:00.001Z

I am going in to hospital because I have a temperature and feel poorly.

MONDAY 2ND MARCH 2009

2009-03-02T16:17:00.003Z

My Daddy's Birthday - but I am not going to tell you how old he is!

Where shall I start? I am on steroids and feel yuk. I had my toe operated on last week and that hurts, my ankle is much better though. I had my verucca frozen off last week with liquid nitrogen - ow ow owwww that hurt lots!!! But I was very brave so it didn't hurt to be fair.

The worse thing is that my hair has decided to fall out again and it shouldn't do that so I am not very happy about it at all. It just decided to come out and it is not fair to me to do that.

That's all.

Missed two photos of Digby and Sissy Snake so here they are.

2009-02-17T08:53:00.004Z

16th February 2009

2009-02-16T07:54:00.008Z

I had my cast taken off on Friday instead of Thursday because Mark was in theatre on Wednesday until four o'clock (in the morning) so we thought we would let him have a sleep so we can see him in his best mood!!!!!! When we saw him on Friday he was in his best mood and he cut the cast off with a saw and luckily it doesn't cut skin. After that I could walk on my ankle but it felt really weird. Then I started running down the stairs with sissy snake and I made my ankle hurt again. Now it hurts as much as it did before so we e-mailed Mark and since then its feeling much better so I need to tell Mark.

I am on half term now and I have fun filled week, this is what I am doing: Today I have a blood test (not so good) but then I am going out with granny fish and papa for lunch. On Tuesday I am going to the cinema with auntie Nic Nocs (if my neutrophils) are okay. On Wednesday I am going to the riding stables with my best friend Georgia for the day. On Thursday I am going out with Gillie my great auntie. On Friday I am going to hospital for my 2nd verucca appointment because at my first appointment they didn't have the right potion (liquid nitrogen) to put on my foot so I had to go home. On Friday afternoon I am going down to devon for the weekend. And that is my week. (I didn't tell you what I was doing all week because I wanted to make you jealous, it was just incase I forget what I am doing I can check what I am doing!!! I hope everyone has a good half term.

Monday 9th February 2009

2009-02-09T18:54:00.005Z

Igloo building at school Snow girl on the green

Sissy Snake and me (leg in cast!)

Steroids finished the weekend before last but I felt really poorly right up until Thursday last week. Did I tell you about my ankle? I don't think so. Well, you know it was hurting me and I went to see the doctors? They took x-rays and luckily it is not broken - I think I may have told you that bit. Then I went for my regular monthly clinic appointment and Dr Visser thought I really needed to rest it otherwise it would be a big problem for a long time so guess what?!?!? I have had it in plaster for the last 10 days and hopefully it will come off this Thursday. It is difficult to tell whether it feels any better because I can't move it in the cast so we will just have to see! Dr Visser also sorted out a few other things and I will soon be having my toenail operated on because it keeps growing in and he gave me some new pills to have twice a day because my tummy has been hurting and I have felt sick alot. I have had them for a couple of weeks now and they have made me fell much better.

We have had so much fun in the snow. We built an igloo at school, Daddy took us sledging (and he fell off!!!) and Mummy and I built a snow girl on the green outside our house for everyone to see but tonight can you believe this? Emily saw some boys messing about and then they took the head, sunglasses and hat off our snowgirl!!!

Can I just say thank you very much to everyone who sends me letters, cards and presents - I had an amazing cushion sent to me this week with four different pictures of horses made from cross stitch on the front of it. It is gorgeous so thank you very much.

Friday 30th January 2009

2009-01-30T11:57:00.002Z

S T E R O I D S A R E E V I L ! ! !

28th January 2009

2009-01-28T23:37:00.003Z

Guess where Emily, Mummy and I have just been?!?!?!?

Strictly Come Dancing Live and we met everyone after the show. It was amazing.

I am so tired now though, so night night!

Tuesday 27th January 2009

2009-01-27T15:14:00.002Z

Sorry, sorry, sorry

I am so sorry for not updating my blog sooner. I have been very busy and I have been trying to go to school as much as possible. Infact last week I nearly, very nearly, made it through a whole week which would have been the first time since I was diagnosed in June 2007! But anyway, I didn't because my ankle was hurting me sooooooo much so we went to hospital on Friday afternoon to have an x-ray and see the doctors. Unfortunately, the orthopaedic doctors were so busy they couldn't come to see me and we had to wait 3½ hours until they told us they were soooo busy and we would just have to wait. Luckily Mummy's cousin is an orthopaedic consultant so he very kindly came to see me once we got home and checked out my x-rays. I have not broken anything, just strained something and have to rest. I love running and playing sports at school though so it is not so easy for me to rest!!!

Now, whilst I was at hospital, the TV cameras turned up to film Dr Visser and guess what??????? I was on the BBC news on Friday night. Just incase you missed it you can click on here http://news.bbc.co.uk/1/hi/england/leicestershire/7846964.stm and then you can play the clip of the news!!

I am still busy, busy and feeling sort of ok but oh no, oh no, oh no ....................guess what happens tomorrow?????!!!!! S T E R O I D S!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I just know I am not going to be very happy by Thursday and do you know what???????? It is Mummy and Daddy's wedding anniversary and they are going to go out and leave me at home with Granny!!!!!!!!!!!!!

Thursday 8th January

2009-01-08T09:55:00.003Z

Hi everyone, I have just finished my steroids and woken up this morning and been sick! But now I am feeling much better and ready to go to my friend Lily's house and then tomorrw my best friend Georgia's house . I went to ZIZZI yesterday with Philly phil pot, Guy and Arabella and I saw William, a friend from school . I ate one of my favourite foods when I was first diagnosed "carbonara" that was delicious. I am going to the riding stables on Saturday which will be fun because I have not been in ages. But I did go and see India Pover's horse Spinner on Monday because my sleepover was cancelled with my cousin Molly because she had a cold but I am still sleeping over at her house on Sunday and then staying over and playing all day Monday!! Mummy thinks I am too busy but I dont. I am ready to go back to school now and see all my friends that I am missing so I am looking forward to next Wednesday to do that.

Special messages: I hope Ben and Lucy and everyone on the ward are feeling okay and ready to go back to school. I hope Bethany is still feeling fantastic and Asma is feeling good too.

THURSDAY 1st JANUARY 2009

2009-01-01T19:50:00.002Z

Happy New Year!

Bad news - I am on steroids and feel horrible.

WEDNESDAY 24TH DECEMBER 2008

2008-12-23T16:49:00.002Z

NEARLY, VERY VERY NEARLY CHRISTMAS!!!

Well, I have had my LP and Dr Madi decided it was best to keep giving me the ITMTX eventhough it may be irritating my brain. If I have another seizure then Mummy and Daddy and Dr Madi will have another talk about it but just now I am ok. My nurses have been very naughty though..................do you know what happened???? Well, last week Julie took my blood and put it in an orange bottle but it went to the wrong hospital so they lost it so then I had to go to hospital the next day for another blood test. That means my port in my chest has to be accessed (a big needle stuck into my chest) twice in two days......ouch ouch ouch! Then do you know what happened this week................Julie took my blood and it went in an orange bottle again and the hospital it went to lost it AGAIN so Corinne had to come today to take some more so that is another needle just a day after the last one. My port is really sore now and is quite fed up with being poked and is really really bruised so we are going to have a rest next week and just take my blood from my hand instead - yukkkkkkk!

We have been very busy, I finished school last week and had a big carol service which was cool. The week before we had a Jemima Invites Carol Service at Oakham School and I read from the bible. I really loved doing that eventhough there were over 420 people in the chapel!

I have had my friend Georgia over to play and we are all just about ready for Christmas now. Emily and I are sooooooooooooooooooooooooooooooooooooooooooooooooo excited we have decided to go to bed early tonight so that Santa can come quickly!!! We are going to meet our cousins in the pub first and then rush home to bed. Can't wait, can't wait can't wait. Then tomorrow we have Auntie Nic Nocs, Uncle Y'Ed, Hattie, Max and Tilly, Auntie and Uncle Geoff, Auntie Dottie and Uncle Maurice, Granny and Papa, Mummy, Daddy, Emily and Me for Christmas day Yiiiipppeeee!!!

Have fun everyone and happy, happy christmas!!!

Tuesday 9th December 2008

2008-12-09T17:13:00.002Z

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

2008-11-27T17:38:00.005Z

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

2008-11-17T19:27:00.002Z

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

2008-11-10T16:45:00.003Z

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

2008-11-08T13:36:00.001Z

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

Thursday 30th October 2008

2008-10-30T08:53:00.002Z

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

2008-10-26T10:14:00.002Z

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

2008-10-20T20:22:00.003+01:00

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

2008-10-15T21:06:00.003+01:00

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

2008-10-07T19:33:00.003+01:00

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

2008-09-22T21:24:00.003+01:00

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

2008-09-17T13:32:00.003+01:00

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

2008-09-16T16:54:00.001+01:00

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

2008-09-11T18:10:00.002+01:00

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!!!

2008-08-25T16:21:00.002+01:00

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.

2008-08-05T08:04:00.003+01:00

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.

We're home!

2008-07-28T12:03:00.003+01:00

Hello Everybody!

I have just been on holiday to Brancaster Staithe for a week with the Povers and the McCormacks. I had a fab time and Millie, Flora, Issy an Ed let me go in their pool every day and let me sail their Topper too. We went to the beach every day and it was really sunny.

This week Emily and I are off to Debbie's for Pony camp and Debbie said we can sleep over too. We can't wait!

Next week we are sailing for 4 days doing our RYA stage 4 again and then learning how to sail with spinnakers. Yippeeeeeeee. I hope it is windy enough!!!

Oh yes, I feel really well too. My toe is much better now and I am not on steroids anymore so not much bone ache. I have vincristine on Wednesday and start on the dreaded steroids again which is one week early because we are going to Devon for 2 weeks at the end of next week and I can't have vincristine whilst I am there.

Friday 18th July 2008

2008-07-18T20:15:00.002+01:00

I had a fantastic day today.

Wishes4kids held a day at Donington Park for all the children they have granted wishes for (remember they gave me an amazing day out at Strictly Come Dancing). I took my friend Georgia because Emily was busy and we went in so many really really fast cars. I went 100 miles per hour in a Caterham with a nice man called John driving, it was a bit scary but very fun too. We had a yummy lunch and tea and got to play on a huge scalectrix and I drove in an F1 simulator car. I saw lots of my friends from ward 27 and had a fantastic day.

I am on steroids again and I feel so yuk. I am really really tired, hungry all the time, cross and I can't sleep but other than that I am fine! My friend Georgia was really kind to me today because she knows what I am like on steroids. Thank you Georgia.

Thank you very much Russell and Wendy for such a good day.

Message from Mummy for Kirsty - Nicole Dryburgh is who she was talking about and her web address is http://www.c-h-o-c.org.uk

I am not using colours today because I don't feel like it.

Sunday 13th July 2008

2008-07-13T12:18:00.002+01:00

I am really well!

Apart from just a few aches and pains. I have been very busy, helping out at the riding stables but I was very tired yesterday because I had so much to do. I fell over a couple of times but I am ok. I am going to do two full days next week because there are pony days at the stables and Debbie needs lots of help.

We have had a fantastic day today. It was the Kirby and Desford Tennis Tournament for the juniors and Emily and I both played. It was really fun and we had a swim afterwards then yummy tea and a disco. At the end of the day I had a really big treat because the lady who lives at the house where we had tea has a tiny pony and trap and I had a ride on it, it was great fun. Mummy wants to get a trap so Digby can take us for rides!

I am going to have some IV chemo on Wednesday and start the dreaded steroids again for 5 days - yuk, yuk, yuk. I am going to see Dr Madi aswell and I am going to tell him about my sore ankles and my arm which hurts again now. Last time I saw him he thought it would be a good idea to have an xray to see what my bones look like so maybe I will have that this week. Who knows?

Thursday 3 July 2008

2008-07-03T16:49:00.003+01:00

Well done to all the Triathlon people today (and Rosie a couple of weeks ago).

I had my LP, ITMTX and BM this morning and it all went very well and I woke up feeling a bit sore on my back but mostly fine. My blood results haven't really changed much other than my neutrophils have gone down. I am not neutropenic though. That means I stay on 100% chemo again this week but no MTX tablets as I had it in my back this morning instead.

Last night I went to my first group session with my friends from Ward 27. It was really fun and we played some silly games, asked lots of questions and talked about our feelings It was good to see my friends again and everyone has quite alot of hair so now I know that mine will grow again soon. Ben is 3 months ahead of me and I hardly recognised him because he had so much hair. That means that when I go back to school in September and start year 5, I should have quite a lot of hair again..............Yippeee!!! The next session is in August so I am looking forward to that one too.

Only ½ day of school left tomorrow and then we are off for 9 weeks. Usually when the holidays come I am ill, but I hope not this time.

Thursday 26th June 2008

2008-06-26T20:33:00.003+01:00

Well, you would not believe how good my blood results are now. My hb is up to 10.4, my platelets 324 and my neutrophils 4.4. It hasn't been that good since I was diagnosed! That means I can join in with lots more things now and I could even going swimming - Yippeeeeee!

I went to school today and stayed for the whole day until 3.30pm and it was not too bad really.
I started my chemo tablets last night and I have to have that every night for the next 18 months. Some times I have 4 tablets and sometimes 2 all depending on my blood results. I also have to have another chemo med once a week and that is 2 huge tablets and 1 little one or 2 little ones and 1 big one depending on my blood.

I feel ok at the moment too. My bones are quite painful and my skin is tingly and a bit sore but otherwise ok. My hair is beginning to grow back too. It was so funny at school today. We were playing a game and the teacher said everyone with blonde hair go to that corner and I said, but I haven't got any hair and everyone burst out laughing! I think it is going to be browny blonde this time but who knows.

We only have this week and next week left of school now and then I will be finishing year 4. Big Sis is leaving school next week to go to her new school so lots of changes for us. It is the school fete next Tuesday which is really fun but I have to be in hospital for a lumbar puncture and bone marrow thingy. I hope I wake up quickly though so I can go to the fete on the way home.

Emily is in the school show this week and we have just come home. It is really good so well done everyone who is in it.

Thank you everyone for leaving me messages and hello to my new friends from Hawaii, Dubai and Canada.

Wednesday 18th June 2008

2008-06-18T18:55:00.003+01:00

Yippee!!!

I started maintenance today so now it is only 72 weeks to go until I finish my treatment!!! Well, I sort of started maintenance today. My blood results are still not quite good enough to have all the medicines I am meant to have so I had some IV chemo and have started taking the dreaded steroids but I am not having the weekly oral chemo or the daily oral chemo until my blood has recovered a bit more, hopefully next Wednesday.

I went to school after the hospital today for the first time in about 10 days and really enjoyed it. Then after school Mummy and I went to meet a lady who was lovely about me having some reflexology treatment to help me to sleep and with any pain. I can't wait until that starts.

I am really excited because on Friday we get to dress up in our school league colours for the day and have lots of league activities. I am a Minnow and our colour is red so I am going to wear my red stripey leggings and a red cardy!

PS When I went for my chemo today, one of my very special nurses missed my port which means she stuck the needle in me in the wrong place and then had to take it out again and put it back in in the right place. You know who you are special nurse. Move to the bottom of the list. No, only joking, I forgive you, you are still right up there!!!

Friday 13th June 2008

2008-06-13T16:52:00.005+01:00

May 2007

One year on!

Mima and I have sat down to write today's post and deleted the first three attempts because there is so much to say both positive and negative and we don't know where to start!

Mima's version:

Ah, I know what to start with. The positive side is that I have reacted well to the treatment (I think) and I have met some fantastic friends in the hospital and even though I broke my arm I have still been able to be with ponies who I love. On the negative side, I have no hair, I take lots of drugs, I have lots of needles stuck into me, I have had a seizure, lots of anaesthetics, an MRI, a CT scan, an echogram, an EEG, I feel sick most of the time and I have no energy and I bruise alot. I miss out on parties, shows, trips, school, sleepovers, swimming, riding and I have to rest alot. I can't wait to start on maintenance because then it is only another 72 weeks to go until I finish treatment. That would mean if I get to start next Wednesday then I would finish on 4th November 2009 and then I could ride again after my birthday in 2010 so I will be 11.

Mummy's version:

What a year - let's just put it down as one we would prefer not to repeat. Thank you everyone for all your support. Only another 18 months to go! I have so much to say about our experiences and our thoughts, but this is Mima's blog and her way of communicating so I will not intrude.

Messages: Fifi - I hope you can see I love my pyjamas! Max - It was really kind of you to come to watch me at Great Bowden and I always love your messages. My special nurses (you know who you all are, at hospital and at home) - thank you for being there for me all the time. All the HCAs and Helen - thank you for being there for me all the time. Everyone who has ever left me a message - Thank you, I love to read them all. All my friends - thank you for looking out for me.

Friday 6th June 2008

2008-06-06T20:32:00.002+01:00

I am beginning to feel better again. When I woke up on Thursday morning I felt better so I put on my uniform and went to school because my exams started on Thursday. I think they went ok and then I have been to school today too for more exams. I had a blood test at school again and Yippeee!!! my hb has started to go up again and so have my platelets but my neutrophils are even lower now 0.08 so if anyone is ill at all please don't come near me!!!

I am very excited because I am going to the riding stables in the morning to help out with leading in some of the lessons. I really miss the ponies so I can't wait. All my clothes are ready for the morning and I don't think I will sleep much! Then on Sunday I am doing some dog agility and dog obedience at the Fernie Hunt Fair at Great Bowden with Digby Dog. I hope he behaves. He was really naughty when we went training.

My friend Louis has left me a message and he has had his bone marrow transplant. I am very pleased it was ok and hope to see him soon. Good luck Lou and keep getting better.

Night Night.

Wednesday 4th June 2008

2008-06-04T07:02:00.003+01:00

Happy Birthday Auntie Tan!

I am shattered! I have had a busy few days and been to school. On Sunday Daddy took me to hospital for a blood test because everything was dropping and I ended up staying most of the day and my platelets were only 14 so I had a new bag. I have a cold and a sore throat so Dr Heaney only just let me go home! I was very worried because I had my school trip on Monday and I really wanted to go. We had a great day out at Beaumanor Hall and we all dressed up as evacuees. Granny made me a dress and I made a gas mask box and an identity card.

I had to have another blood test yesterday to check that my platelets were coming up but my hb had gone down again so I have had to have another blood transfusion today. It took ages and I don't feel very well again now. My neutrophils are 0.1 and my platelets are dropping again too. I will have another blood test on Friday morning and see what to do then.

I am going to bed. Night night.

Wednesday 28th May 2008

2008-05-28T20:08:00.002+01:00

Let's celebrate!

Today, I had my last asparagus and mayonnaise into my leg!!! Yippeeeeee!!! It only hurt a little bit and I was very brave. I had 2 Rosie nurses with me and Helen play specialist and Mummy so I didn't really have time to think about it. I also had some vin and christine today into my line but then had a bit of a dizzy spell afterwards so had to lie down for a bit. My throat is very sore so the doctor had a look at me. We have to be very careful now because I don't have many neutrophils (0.5) and my platelets are very low too (35). I had 2 bags of blood on Sunday so my hb is up from 7 to 9 which is just about ok. We saw Dr Madi this morning too and he said if I have even the slightest temperature, so anything over 37, that I have to go straight in to hospital. I really don't feel fantastic so I hope a good nights sleep will make me better.

Mummy and I did a spot of shopping today because Emily went to play with her friend Lucy. We bought a few things for Louis because he is going in to isolation on Sunday and we are going to see him in Birmingham on Friday if I feel ok. He has had lots of radiotherapy and is very sleepy so I hope he is awake when we go!

I have 2 friends, Georgia and Freya to play tomorrow because Rosemary play specialist is coming and we are going to play a game which will help my friends understand how I feel when I am not able to join in and do things. It is a really good game which my friend Lucy who also has ALL designed with Rosemary, so I hope we will have some fun.

Sunday 18th May 2008

2008-05-18T21:09:00.002+01:00

I started my treatment on Tuesday. I had a general anaesthetic for a lumbar puncture and some chemo into my spine then had a full afternoon of chemo into my line so we didn't get home until late so I was very very tired. I say my friend Lewis in hospital. He is going to Birmingham next week to start his bone marrow transplant. He will be gone for 9 weeks and has to be in a room on his own and can only talk on a phone even to his Mum and Dad! Mummy said we can go to visit him if he gets bored. I hope he will be ok.

Julie, my home nurse, rang to day to tell me that my friend Alara had died yesterday. She was very very poorly and had neuroblastoma. Mummy and I had talked about how poorly she was and I knew she was going to die. I painted a card for her on Saturday and Julie took it to her and she said she liked it. Alara really liked horses too.

I have not been feeling too good this week and have not been to school at all. My legs have been very sore and I have been really tired. Mummy and I tried to go out for a little trip most days to take my mind off feeling sick but then I had to go to bed when we got home. We found a farm near here which sells bacon, ham and sausage which only has a really really small amount of sodium nitrite in it so now I can eat them again. I have had chemo at home every morning from one of the nurses but not today. I have been much better today and have planted some courgette and pumpkin seeds.

I am going to go to school tomorrow and Julie is coming to put a needle in my port and take some blood. I am going to do it without Mummy again because it was ok last week. I think I will ask Lily to come with me again because she was so good last week. After school a golf teacher comes to school and I am learning to play with 5 of the year 2 boys. I am the only girl!!! It was really good last week and I hit some good shots. Then we go home for some tea and straight off to dog agility with Dig Dog. I hope he is good again. He always wees on the jumps though and last week even weed on my foot!!! Yukkk!!!

Monday 12th May 2008

2008-05-12T20:35:00.003+01:00

I have had a great week. I have had no treatment at all and have been able to go to two birthday parties and two barbeques!!!

I am very proud of myself today because I had a blood test at school all on my own and I think I was really brave. My friend Lily came in with me and she made me feel happy because she is funny. I went to her birthday party on Saturday and it was such fun. You will never guess what we did. First of all we had a swim and that is the first time I have swam in a year. Then we went in the outside jacuzzi and then we had a manicure! It was fantastic!

My blood results today are very good so that means I can start the last four week block in this lot of treatment. So in to hospital for 8.30 am tomorrow morning for a general anaesthetic with a lumbar puncture for some methotrexate into my spine. Then really really boring the rest of the day will be cyclophosphamide and fluids until about 7 o'clock tomorrow night. Then after that I will have chemo into my line at home every day for 4 days and chemo tablets for 2 weeks. I think I will probably be sick tomorrow but who knows.

Night night. Oh yes, Digby and I just did dog agility again and he was really good.

Tuesday 6th May 2008

2008-05-06T09:40:00.002+01:00

I FEEL MUCH BETTER

We have had a fantastic weekend in Norfolk with everyone. We have been to the cafe for breakfast, played on the beach, lunch at the pub, played with my friends, supper at the sailing club, breakfast at the cafe, played on the beach, went to hospital for a blood test and then went home. I had a really special treat on Friday. Helena took me to Norfolk early and I had a sleepover with Henry and Alice and I loved it.

My blood is not good enough for me to start the next block of treatment so that means I am not in hospital today for the whole day. I think I will have a whole week off now and then try again on Monday to see what my blood is doing then. My bones are feeling much better and not so painful.

Thank you everyone who did the bike ride. We have raised about £15,000 which is amazing. I gave Justin a hug on Saturday to say thank you so here is a hug and a thank you to everyone else who did it too. If you enjoyed it, Uncle Martin and Uncle CJ think they will do it again.

Enjoy the sunshine!

Tuesday 29th April 2008

2008-04-29T19:50:00.002+01:00

Mima is still not very well. Her bones are giving her alot of pain at the moment especially in her back. She has gone to bed with a dose of morphine and a hot water bottle in the hope she may sleep. She is eating like a horse as a result of the steroids and her little tummy is really beginning to swell. Sadly her hair is falling out again so I have shaved the majority - hopefully, this will be the last time it will fall out so we will see some real growth over the summer.

She did want me to tell you about her new hobby - dog agility! Digby and Mima attended their first class last night and both thoroughly enjoyed it. There is one lesson each week and another little girl started last night with her dog too so Mima has a friend to chat to.

The bike ride is really hotting up for this weekend. We have about 40 cyclists riding from Leicester, Northampton, Lincoln and Rutland to Brancaster Staithe in Norfolk - a distance of about 100 miles (depending on where the start point is!) Sponsorship is going phenominally well but if you would like to support the riders take a look at www.justgiving.com/ridetonorfolk We are all wishing for a fine day with a westerly wind, so if anyone has any influence in that department would you mind putting in a good word please!

FRIDDAY 25th APRIL 2008

2008-04-25T09:34:00.003+01:00

Happy birthday Auntie Nic Nocs
I am feeling yucky. My plaster is off and I am at home today and I was yesterday but I am on steriroids again now for a week so I am not very happy about that. I can't sleep and I am angry alot. They make my bones hurt and so does the vincristine.

Sunday 20th April 2008

2008-04-20T19:00:00.002+01:00

We're Home!

I don't know what is wrong with my leg but the doctor thinks it could be the steroids that have made my bones hurt. I had an x-ray this morning which was fine so no more broken bones. I start steroids again on Wednesday for another 7 days so I will just have to take lots of pain killers whilst I am taking the steroids and see if that is ok.

Anyway, I am much better now and can walk again so feel much happier too. I am seeing Mr Kershaw again on Wednesday to take my plaster off and have another x-ray on my elbow and shoulder and hopefully it will be ok to leave the plaster off if the bones have mended properly but if not he said he will put another plaster on and wait until it mends. Other than that, more dr ruby's in and vin and christine on Wednesday and that should be it for the week.

Thank you everyone for your messages again.

Saturday 19th April 2008

2008-04-19T19:53:00.001+01:00

Happy Birthday Auntie!!!

Just a quick update - Mima has a very sore leg and she is unable to put any weight on it so she is being kept in hospital overnight for observation and to see if her blood shows any sign of infection. We will hopefully be home soon.

SUNDAY 13TH APRIL 2008

2008-04-13T18:34:00.003+01:00

I am not very happy or chatty because I am on steroids. I have no energy and I feel like crying all the time. On the weekends I have to take sooooo many pills in the morning and the same at night time and I don't like it at all. My ankles and feet are very sore too and I think I have got arthritis.
I just wanted to say Hello to Ruby who is in isolation as she has shingles. I hope you feel better soon Ruby and you can go and feed Butterscoth a lovely juicy carrot. I am pleased you liked my painting on the window on Ward 14. I think we should all have a small sticker that we can put on the window in whichever room we have stayed in so we all know who has been there. I could be a pony and you could be a butterfly or something. What do you think? I asked Mum if I could go on your Daddy's motorbike but she had kittens so I guess that is a no! Good idea though.
Thank you to everyone else who has left me messages. It is very kind of you.
I am going back to school tomorrow but my first thing is a blood test at 9 o'clock whilst everyone else does PE. Next is Drama which I really love so the nurse has to be finished by 9.20am or I will miss it. Then in the afternoon is double art. I don't know what I will do then with just my left hand. Oh dear, now I am all grumpy again.
Night night.

Tuesday 8th April 2008

2008-04-08T20:18:00.002+01:00

I started the last intensive block of treatment today with an LP and some ITMTX. I think I worried Mummy a bit though because it took me ages to go to sleep for the anaesthetic, but it was not my fault, it just would not work! I am back in tomorrow for Vincristine and Doxorubicin which should take a couple of hours and then in again on Thursday for some Peg Aspariganase. They are all the proper names but I call them Vin and his wife Christine, Dr Ruby's in and Peg with asparagus and mayonnaise. So by Friday I should be feeling fairly yuk, oh and I nearly forgot, I will be taking steroids from tomorrow too so no sleep and angry, angry, angry!

My arm is doing fine and Mr Kershaw, the ortho whatsit man said he was happy with how it looks and I have to start doing some funny excercises soon by hanging my arms and swinging them like a monkey! He showed me and it looked very funny. I saw Dr Madi on Monday about my arm too and he said some very bad news ...................................................no more riding until I have finished my treatment and for 6 months after so that will be 2010!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I can't believe it, I am sooooooooo sad and nothing has made me happy since he said that. He explained that the chemotherapy and particularly the steroids will have made my bones more easily broken and until everthing has finished they won't strengthen again. Boring, boring, boring. Horse riding is such a good hobby and I so love horses. Does anyone have any good ideas for other hobbies for me? Don't forget I have broken my right arm and can't use it for 8 weeks so no painting or writing or anything that needs my right arm.

Message from Mum: If you are not doing anything on Thursday, we have a big picnic day at Twinlakes so come along and meet us all for some fun. Just email info@jemimainvites.co.uk to reserve your tickets. You can go at anytime but we will be meeting on the upper level of the Labyrinth barn at 12.30pm.

TUESDAY 1ST APRIL 2008

2008-04-01T11:54:00.003+01:00

SCOTLAND WAS SUCH FUN UNTIL ...........................................

I fractured my elbow and my shoulder!!!!! I bet you can't guess how I did that can you?!?!?

Well, I was riding a very fast and jumpy pony called Peter Pan and he decided he could fly with me on his back but after he flew twice round the arena I decided I just could not hold on any longer and bang crash wallop I came off and that was that!!!

We went to a very nice hospital in Perth and met some lovely doctors and nurses and now I have my arm in plaster from my shoulder to my finger tips and it is in a sling too.

Otherwise, Scotland was great fun. We found a very pretty place to stay on the edge of Loch Ard and went for a bike ride and a few walks (in the rain!) Digby loved Scotland too especially all the walking and swimming in Lochs. Mum and Dad played golf and Emily and I drove the buggy which was really good fun. I have to go to see a consultant paediatric orthopedic thingy man tomorrow and then we will see what he has to say about my arm.

27th March 2008

2008-03-27T18:44:00.003Z

Look what Granpa bought for me!!! She is called Meggie.

Just A few thank you's

I had a fantabulous birthday and had lots of wonderful presents.

I would just like to say thank you to every body who very kindly bought me a present. I would like to say a special thank you to Max ,a lady who I don't even know but she always leaves me a message on my blog. Thank you very much Max for coming to Ward 27 and leaving such a lovely surprise for me when I went in today. Another big thank you to someone who always looks after me and manages to make me smile even when I am really grumpy. I love my book about sisters - you know who you are! Thank you. xx

We have had a busy day today which started off with a great morning dancing with Laura, Ella and Nisha. It was such fun and I would like to thank Lucy for organising it. I had a bag of platelets this afternoon and we are off to Scotland in the morning for three nights because I do not have to have any treatment for two weeks now - yippeeeeee!

Easter Sunday

2008-03-23T19:20:00.002Z

DID YOU SEE THE SNOW?

When we woke up this morning, everywhere was white. It was sooooooo pretty. Digby lives outside, so when we let him out he was really funny, he was trying to catch the snowflakes and eat them. Then we let the chickens out and they were even funnier, I don't think they have ever seen snow before. They had laid us two eggs for our breakfast and the yolks were completely golden, yum scrum.

At riding yesterday, it was soooooooooo cold and it snowed and hailed and the wind blew so Mummy pulled us out of the class and decided it was not worth catching a cold so that was very sad because I do love riding (did you know that?) That was the first sad thing about the easter weekend. The next thing was that we were going to my Auntie Gillie's house for a big family party because it is cousin Emma, Uncle Matthew, Uncle William, Granny and my birthday all on Tuesday and we like to celebrate together but then Gillie rang to say that our cousin Rose was coming out in spots everywhere and it looked like chicken pox so we decided it would be best not to go!!! Soooooooooooooo sad!!! Then another thing happened. We had planned to go out for an early supper with some friends we met on holiday but they live in Devon and were up here sailing at Rutland Water. The racing was cancelled and they had to go home so we couldn't meet them either. What a nightmare weekend. Anyway, Granny and Papa came round for lunch today and we had some lovely roast beef although the gravy was not very nice and the meat was a bit chewy. Never mind.

I am in to hospital in the morning for another blood test (on Friday, my results were not very good and I am covered in bruises again) and the last lot of chemo in escalating capizzi II. I hope that my blood is still no good and then I won't have to have anymore methotrexate. When Dr Heaney looked inside my mouth on Friday he said 'ooooooooooooooohhhhhhhhhhh, that does look sore' so I begged him not to give me any more because it will just make my ulcers worse and it is my birthday (did you know that?).

Tuesday 18th March 2008

2008-03-18T12:48:00.003Z

This is the Easter Bonnet Parade on Ward 27

I am at home today because my mouth is really ssssssssoooooooooooooorrrrrrrreeeeeeeeeeeee and my throught rrrrrrreeeeeeaaaaaaaallllllllllllllllllllllllllllllllllllllllyyyyyyyyyyyyyyyyyy hurts but still I really enjoyed the party and thank you to Charlotte Smiles! (That is the charity who organised and paid for the party) and to my special nurse Hannah for coming down in the parade with me! Mummy is being really boring because she is making the curtains for Emily's new bedroom today. I am trying to help her by telling her she is cutting the fabric in the wrong place but she doesn't believe me. Do you know what, I was right and now Emily's curtains are going to be too short!!!!

Katie has just rang up to tell me that I don 't have to have any chemotherapy on my birthday. (Katie is THE BEST!!! I know she reads this too!!!) Oh did I tell you it is my birthday next Tuesday!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

WEDNESDAY 12TH MARCH 2008

2008-03-12T22:33:00.003Z

Blood test again today

I went to hospital this morning to have a blood test to see if I am ok to have a general anaesthetic tomorrow for my lumbar puncture and IT MTX (chemo into my spine). After I had my needle put in I don't really know what happened but one minute I was fine and then the next I felt all woozy and had to lie down. I couldn't talk and my eyes were blurry. It was really frightening and just like before when I had a seizure. The doctor came to see me, checked me over and said she could hear a slight murmur in my heart and when my line was flushed it could have caused the funny turn. Anyway, I stayed in the hospital for a few hours until I felt a bit better and then came home to bed.

I spent most of the day wondering what my blood results would be like and also worrying because the nurses had told me this morning that there was not an anaesthetist available to do the list in the morning. All a bit of a nightmare because I like to have it sorted in my mind when I am having a sleep and an LP. I found out this afternoon that my blood was ok and there is an anaesthetist so I will be nil by mouth from midnight. More Vincristine and IV MTX on Friday so I will feel horrid over the weekend!

I did see my old friend from the ward Asma this morning so that was really good, she has lots of curly hair! We are trying to arrange with her mum to come over for a sleepover in the easter holidays - yipeeeeee!

Sunday 9th March 2008

2008-03-09T21:55:00.002Z

Well, I had my chemo last Tuesday and then my asparagus and mayonnaise on Wednesday then I was sick, sick, sick until Friday afternoon so no school for me! Luckily I felt much better by Saturday morning so I managed to go riding. Daddy took me this week because of Emily's choir competition and we went to the pub for lunch after riding but then Daddy wanted to watch Rugby all afternoon so I was a bit bored!
We had fun today though, I felt much much better and we went to the Fox and whatsit (we can never remember the name) in Knossington for lunch with Granny and Papa. I really love the beef they do there and huge yorkshire puddings and great roasties. I ate loads which was good because I haven't felt much like eating this week (don't tell Katie though because she will just put another nose tube in). I made two new friends Millie and Amelia and we played challenges on the monkey bars in the garden.
This week I have a blood test at home on Wednesday then a general anaesthetic on Thursday for IT MTX (into my spine), then IV MTX and some more Vincristine on Friday so another yuk week. Only one more dose of IV MTX and Vincristine after that though, the day before my birthday so I will be poorly then!!!!!
By the way, Emily's choir went through to the next round of the Choir of the Year competition so Well Done Stoneygate!!!

Tuesday 4th March 2008

2008-03-04T18:20:00.002Z

I am very well and have been for a little while now. I had my blood test and Dr Donald tickled my tummy and my knees and ankles yesterday (that is what he has to do to check that everything is ok) and he said because I giggled alot that he thought I was very bright and cheerful. My blood results were good too so that meant that I could have the full dose of IV MTX and some Vincristine today. I don't mind, but it does make me really really sick. I take lots of anti-sickness tablets but they make you constipated, so then I take tablets for that too - yuk, yuk, yuk. I saw my friends in hospital today and we played a finding game on the computer together. We are also making easter bonnets because we have an easter party on the Ward very soon. My friend Georgia is in hospital at the moment and she didn't look very well at all. She has nearly finished her treatment but her body has decided it doesn't want anymore vincristine already and her kidneys have stopped working properly. Get better soon Georgia.

Did I tell you I was doing a drama exam? Well I took the exam on Saturday and had to stand up in front of a man and say poem called A Smile by Jez Alborough. Do you know, I passed with distinction. Not many people are surprised by that because they think I am a bit of a drama queen!

Asparagus and Mayonnaise in my leg muscle tomorrow at about 10 o'clock, so if you hear any very loud screaming, you will know what it is all about.

Emily and her senior choir are off to Warwick this weekend to take part in the Radio 3 choir competition so we are all going there on Saturday. Good Luck Stoneygate!!!

Sunday 24th February 2008

2008-02-24T19:46:00.006Z

BUSY, BUSY, BUSY

I have had a really busy weekend. Yesterday, I bet you can't guess what we did in the morning??????? Yes, we went riding. It was great. I rode Snowy who was very well behaved and I cantered and jumped with him really well. Emily rode Roos who she is not too sure of but still had fun. Then we went to hospital for chemo. I had some more Vincristine and some IV methotrexate which took about an hour. Both Rubys were there so it was nice to see them and also Louis is still there and I always have fun with him. Big Ruby was very bored though because she was waiting for a blood transfusion and platelets which had to come from Sheffield. Sorry I couldn't stay to keep you company Ruby and I hope it all went ok in the end.

Today, I had a very lazy morning watching TV and lying around in bed. Daddy decided we should have roast pork for lunch today but we didn't really like it so won't be doing that again! Then I went to my friend Freya's 9th birthday party this afternoon. It was great fun and we dressed up like St Trinians girls and did a dance routine. I was one of the team leaders and loved it. Happy Birthday Freya.

I am very tired tonight so off to bed now. No treatment until next Monday and then some more Vincristine and IV Methotrexate until I reach toxicity!!! That will either be that my platelets or neutrophils are too low to have any more or my mouth and lips will be ulcered and blistered and I won't be able to have any more. I hope it will be my bloods are not good enough but last time I had to go into hospital because my mouth was so sore and I had to be on morphine! Yukkkkkk!!!

We heard some very sad news this week. My friend Tom from Ward 27 died. He had cancer in his bones and had already lost one of his arms. He was really good fun and always made me smile. He used to tell us all jokes and play bingo and lots of games at the hospital with us. I will really miss him. Bye Bye Tom.

One last thing. I keep forgetting to tell you that the chickens are laying! Not very often, but we have had 5 eggs now. Digby found the last two under a bush in the garden. He was so funny, he was really excited and started running around the garden then came to Daddy and put first one egg down on the floor very gently and then went to get another. Clever boy!!! Emily put them in her pocket and broke one!

Monday 18th February 2008

2008-02-18T18:06:00.008Z

THE BEST WEEKEND EVER EVER EVER!!!!!

We made it to Dittisham to stay with Uncle Y'Ed, Nickety Aunt Nocs, Hattie, Max and Tilly Bom Bom and had just about the best holiday ever. I felt a bit poorly to start with but once I had all my anti sickness medicines I began to feel much better.

We did so much and the weather was fantastic. On Saturday, we went to a beach which was down a really long pretty lane and when we got there there was nobody on the beach. Daddy and Uncle Ed cooked moules and they were delicious and it was such fun. We all went on an adventure over the rocks and then made a dam in the sea and Tilly and I made a boat to play in!

We did lots of crabbing and you would not believe how many crabs we caught. Then we let them all go and they had a race to the sea.

It was a really cool weekend. Kerching!!!

TILLY AND ME IN OUR SAND BOAT WE MADE ON THE BEACH

DADDY AND UNCLE ED COOKING MOULES

EM AND ME ON THE FERRY TO DARTMOUTH

HATTIE, MAX, TILLY, EM, DADDY AND ME ON THE FERRY

Monday 11th February 2008

2008-02-11T18:37:00.000Z

Well the good news is that my neutrophils have gone right up to 1.1 so I can start the next block of treatment tomorrow. This is another 9 week block called Escalating Capizzi and it is the 2nd time I have done this one. Last time I spent alot of time in hospital and had the brain seizure so we are not looking forward to it much!

This also means though that after I have some asparagus and mayonnaise on Thursday we are so excited because we are going to Devon to see Uncle y'Edward, Auntie Nic-Nocs, Hattie, Max and Tilly. Yippeee, yippee, yippeeeeee!!!!!

We have had a great day today. We met Philly philpot, Rabbi, Guy and Misha and went for a bike ride through Burghley Park to the Sculpture garden. We kept hiding from Mummy and Philly and had a real laugh. In the end Digby found us and told Mummy where we were!!!

The chickens are all fine but have not laid an egg yet. I bet they will lay one for my breakfast tomorrow because I will be nil by mouth and won't be able to have it!

The chickens have a new home!!!

2008-02-10T19:43:00.001Z

Fresh eggs for breakfast

Here are Tipsy, Hetty and Ebony. They will be having two more sisters but they have not been born yet.

Saturday 10th February 2008

2008-02-09T10:05:00.000Z

Hello Everyone!!!

I am just about to go riding so I am really excited. When I rang Debbie yesterday to see if it was ok for me to ride (she owns the stables) she said I could if I took some cake!!! So I have been baking this morning and have iced lots of fairy cakes to take with me.

It is a beautiful sunny day in Billesdon so that makes everyone smile. I just went down to our village shop with Digby to pick up the bread and I met lots of smiley and chatty people on the way. Digby loves meeting people as they all stroke him.

I had a great day yesterday because Mummy's friend Helena rang and asked if I could babysit her baby called Alice. She is 6 months old and I love her. She smiles at me all the time and I am her best mate! Helena and I took her to the pottery painting cafe and we painted her feet and made a plate for Alice. Then I painted an egg box made out of pot because .........................

For Daddy's birthday we are giving him some chickens to keep in the yard at the back of our house because we eat alot of eggs and it would be nice to have our own so tomorrow we are going to see a man call chicken Alasdair to choose our hens and their house. I will put some photos on here when we have them. We are going to chose one each and name it and mine is going to be called Tipsy.

Got to go riding now. Byeeeeeee

Wednesday 6th February 2008

2008-02-06T20:17:00.000Z

My blood is not good enough yet!!!

Sadly (well not really because I don't like treatment) my blood results were not good enough to start the next block of treatment on Tuesday so I had another blood test this morning and guess what?????? Well my neutrophils are still not good enough. They are 0.55 and need to be 0.75 or more to start treatment. Never mind, I will now have another blood test on Monday to see if I can start on Tuesday - great half term that will be.

Did you know I can't go to school this week? I am really well but there is alot of Chicken Pox at school so it is better for me not to be there. My big sis Em is not at school either though because Mummy, Daddy and Emily all have really bad colds. I have moved out to Granny and Papa's house because it is germ free up there!!!

I have a few messages:

Katie, if you read this, I am going to pop in to see you tomorrow to take my needle out if that is ok with you because I don't like riding with it in.

Ruby, I hope you are feeling better now and your neutrophils are getting better.

Ben, I hope you are enjoying your break and your neutrophils get better.

Lucy, I love your new website and I hope you enjoyed Norwich.

Helen, is it your wedding on Saturday this week?????? I hope you and Hannah had fun on your hen night.

Friday 1st February 2008

2008-02-01T20:50:00.000Z

Happy Birthday Granpa!!!

My Granpa is 70 today and we are going to celebrate with him on Sunday - yippeee!!!

Guess where I have been for the last three days???? In hospital!!! I didn't feel very well on Wednesday and my temperature kept going up so Mummy rang the hospital and they asked us to go in. When we got there I was feeling really poorly and had a sore tummy and I couldn't walk, then I was sick and felt even more rubbish so I was given some antibiotics into my line but then in the night my temperature went down and I started to feel much better. Anyway, I have just got home and now have to go back every afternoon until Monday for some more antibiotics and then I should be better.

My neutrophils are rubbish 0.10 so couldn't be much lower, so if you have any sniffles or bugs, please don't come near me because I don't want to go back in to hospital just yet. Because my neutrophils are so low, I didn't start the next block of treatment but I will have another blood test on Monday to see if I can start on Tuesday.

Have a nice weekend everyone.

Thursday 24th January 2008

2008-01-24T21:47:00.000Z

Last Vincristine for this block of treatment

I had the last Vin and Christine today and just have to wait until my blood results are good enough to start the next block of treatment.

I have been to school every day this week and I have been eating loads too so feel really good.

After riding on Saturday I am going to my friend lily's big sister's birthday party and there is going to be a karaoke thingy - I can't wait.......what shall I sing? My friend Alex's mum (from hospital) has been so kind and given me some very trendy tops so I am going to wear one of those for the party!!!

I saw my friend Asma in hospital today and she has finished her treatment now and had her hickman line taken out. She is so lucky, all her hair is growing back and she looks so well. My hair has all gone and my eyebrows so I think I look like an alien! I really want my hair to come back but only if it is going to stay and grow really long and blonde. I can't be bothered if it is going to fall out again. Asma and I were planning a weekend when she can come and stay and we are going to ride together because she loves ponies too.

Georgia was in hospital today too and her mum was knitting a really cool teddy. George is nearly at the end of her treatment but is not feeling too good so lots of get well wishes to you.

I am soooooooo tired, night night!

Saturday 19th January 2008

2008-01-19T19:20:00.000Z

MOOOOOORE BLOOD !!!

I was right - that blood didn't work last Saturday so I had two more bags yesterday and a bag of platelets too but that was really hard work because we didn't get home last night until 11pm and I was soooooo tired.

I went riding this morning but do you know what, my favourite pony, Robbie, is going back to his owner this afternoon so I won't see him again. We went out for a hack this morning and met Mummy who was walking Digby. It was great fun but first of all I fell off because another pony got out of his stable and frightened Robbie!!! It didn't hurt, I just went PLOP on to the ground! Apparently you have to fall off 7 times before you are a good rider, so only 5 more time to go!

I am still really tired and don't have much energy so I am not sure if this blood has worked either. Mummy thinks it may just be because I have had so much chemo over the last couple of weeks and my body needs to recover. After the last vin and christine next Thursday I will have a week off so hopefully will begin to feel well again then.

We just got back from having supper Market Harborough as a special treat, it was lovely and we all had a really good time.

Night Night! xxx