Wednesday 28th May 2008

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

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

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

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!