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.
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