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!

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

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

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

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

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

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

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

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

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.