Christmas 2013 - Maintenance - Week 49

23rd to 29th December

I LOVE CHRISTMAS! On Christmas Eve it is my sisters birthday so she got to have presents at lunch time when Daddy came home from work, early! And then in the evening I got to wear my favourite Christmas Party Dress and my Auntie and Uncle, Nana and Alfred and cousin who doesn't have chicken pox came to my house for dinner. It was very exciting, especially giving each other presents. I like that. Then you have to go to bed and straight to sleep so that Santa can come to your house.

When I woke up on Christmas day it was quite late nearly 9.30am and I had forgotten all about Santa, but Mummy and Daddy soon reminded to me and when we went to the lounge there we so many presents. I was so very excited. I got lots of new toys and things that I'd asked for. And my brother and Sister did too!

Nana and Alfred came to have lunch with us but I was too busy to sit down and eat I had toys to play with!

On Boxing day when I woke up I came to see if Santa had visited again but he hadn't I told Mummy that she has to tell me when he is next due at my house.

Boxing Day was very exciting and busy because we went to the Polar Bear swim at  the beach to see a lady called Jayne who was raising money for me and my family. It was very busy at the beach and Jayne was dressed like a snowman which is very funny. But I got to play in the water a little bit because it was so warm and sunny, next year we might all have to do it for charity! I had toast and hot chocolate too at the beach. I like Jayne a lot she is my new friend.

Our oven broke on Boxing Day so we had to go out to a shop and eat our lunch which was really fun and different from our normal Boxing Day at home eating leftover turkey and ham pie!

On Friday I had to go to the hospital for my medicine and start on my grumpy steroids. I don't like feeling sick and grumpy but Mummy and Daddy say it will make me better and Toni is home to give me hugs. My blood was better which means that I am starting all my medicines again. I'm not sure I'm happy about that either. Although the Doctors have given me a week off. As I'm going to England on the 6th January they are going to do all my blood tests and Goblins (IVIG) when I am in Leeds having my injection in my back (lumber puncture) which is good.

Mum Says: We have had a wonderful Christmas together, it is such a shame that we were still missing part of the family due to chicken pox but after last Christmas in almost total isolation it was great to have people in our home to share Christmas with us this year! Alice seems to be struggling this month with her steroid one of the most exciting side effects is insomnia which has hit with a vengeance this month and we are up at 3am watching films and generally not sleeping at night. Going to the polar bear swim on Boxing Day was probably the highlight of Christmas for us as we saw so many people and having been in isolation pretty much for most of December it was so much fun and it really made us feel cared about having Jayne getting so much support and sponsorship for her swim! Unfortunately for our lot it means that next year I expect them all to do the same for charity!

SISTERS! - Maintenance - Week 48

16th to  22nd December

We've had to keep my week quiet, I've not been able to go to school or anything fun, Mummy and Daddy want me well for Christmas so Joe took my Christmas cards to all my friends at school and I stayed home.

On Wednesday I had to go to hospital for my goblins (IVIG) because I have the Parvovirus again, that is why my blood has been so poorly. The only good thing has been not taking my brown medicine everyday.

Again it took a LONG time at hospital and it didn't help that my blood didn't want to come out for all the tests they wanted to take. The Doctor had to put the end of the bed up high so all my blood rushed to my head and then he wanted me to pretend like I was doing a big poo on the toilet. He looked very funny. But it did make my blood come out nice and easily.

After the hospital we ran home to get changed into my Tinkerbell Dress and silver shoes for my cousins 4th birthday party, last year I missed it because I was in hospital having blood, this year we were late. Next year maybe I'll be there for the whole party. I didn't really feel very well at the party and I just wanted to go home to bed. But it was nice to see my cousin and give her the birthday present we had bought her.

My best day though this week was Friday as my big sister came home from University! We had to wait all day for her aeroplane, in the end I decided the only way to make it come quick enough was to go to bed and sleep. It worked when I woke up it was time to go and collect her! And to make it even better I got to have Chinese noodles and sweet and sour sauce from the shop for tea!

At the moment Toni is my very best favourite person, unless her boyfriend is here then I like him better!

On Sunday my Auntie called to say my Cousin has chicken pox and that we wont be able to see her over Christmas. That made us all sad because we wanted to have the whole family together and now AGAIN someone would be missing.

 Mum Says: We are so relieved to find out that Alice has the Parvovirus again, as they other option was a relapse and that would have been devastating. We know what to expect from the Parvovirus and are able to relax a bit before Christmas. We are finally feeling ready for Christmas, no matter how ready we were with the food shopping and presents someone was missing and now Toni is home it all feels better. This is the first time we have all been together in one house since May, unfortunately My Niece has Chicken Pox and cannot be with Alice (Chicken Pox being life threatening to Alice at the moment) So we will still not manage a Christmas with the whole family!

Christmas Plays and Parties - Maintenance - Week 47

9th to 15th December

By Tuesday the Doctors said I was well enough to go home, my blood counts were still not good enough to be in school or to do anything fun but at least I got to go home. I'd ended up quite enjoying my stay in Hospital. I'd managed to glitter most of my room and do sticking and painting and a lady who is new at the hospital came to play with me and she might bring puppets too one day when I'm staying at Rainbow Ward.

On Wednesday I got up in the morning and got dressed in my costume for the class nativity play, Mummy and Daddy took me as I'd been practising lots before I was ill and I'd been singing all the songs in hospital. It was lots of fun being on stage and singing and I got to do a dance because I was a Christmas present. Nana and Alfred came to see me too and they thought I was really good at my singing and dancing. I didn't stay at school though, after my play Mummy and Daddy took me home. I miss my friends and my teachers.

Thursday was the Rainbow Ward Christmas Party and I got dressed up in my best Christmas dress and went to see my friends at the hospital. It was lots of fun we played a big game of pass the parcel and I got some sweeties. We saw Father Christmas and he gave me a present and then a magician came and did trick for us. We had to say the magic words for him, when I tried them at home they didn't colour my colouring book like they had for him. Mummy and I saw lots of people we have made friends with when they have stayed at the hospital with me and I got to see the triplets who were in hospital at the same time as me but we weren't allowed to be together because I was so neutropenic.

My best bit of the party was that one of my nurse friends had taken her dog to the party and it was a tiny dog that I could pick up and cuddle.

Mum Says: It is difficult in the run up to Christmas keeping Alice away from parties, she missed 2 so we decided to let her go to the hospital party, it at least gives her good memories of Rainbow Ward and not just being sick. Although the Nurses always make our stays a positive experience and although Alice dosen't like the idea of being at the hospital she never complains when she it there. Taking her to the school play was probably more for us than her but it was worth it as it will always be a lovely memory for us and Alice was in her element on stage (oh dear). We are not feeling at all Christmas-ie at the moment we have even tried putting up decorations, although Joe wanted to wait for Toni to get home before we put up our Tree.

Birthdays and Blood Transfusions - Maintenance - Week 46

1st to 7th December

I've had a very exciting time celebrating my Birthday. On Sunday we had a Mad Hatters Tea Party at my house with my cousins and some friends. It was lots of fun. I had a teapot birthday cake, I wore my Alice in Wonderland dress and we played pass the parcel, but mostly we made lots of noise and mess, we even hid under my sisters bed if you take the draws out from under her bed 4 of us fit under the bed!

Monday was my actual Birthday and I went to school which is always fun and Mummy took me to McDonalds for lunch, just us 2. When Daddy came home from work we put Skype on to talk to Nana and Grandad in England and I opened MORE presents from Mummy and Daddy and my family in England. It is so much fun being 4!

On Wednesday I went to hospital to have my blood tests, we were hoping to make it to my dance class in the afternoon, although I had been tired for a few days it was hard to tell if it was because I was excited or ill. When I got to Rainbow Ward they made me wear a special Birthday Hat and gave me a present, a game and they sang to me and I had balloons. I wore my new special silver shoes I had for my Birthday for the nurses to see.

My blood tests weren't very good and I needed to have another blood transfusion. So the Nurses called Mummy for me to go and see them on Friday.

Mummy and I sorted out all my birthday presents and I took all the ones I wanted to play with whilst I had my blood. It takes a LONG time.

The problem this time was that I had a temperature when I finished having my blood and the Doctor said I was going to have to stay with them for a few days on IV Antibiotics. I was not happy about that at all, but Mummy and Daddy both had sleep overs with me so that made it better and I had my new toys to play with, and I got to put the star on top of the Christmas tree in the play room.

Mum Says: Alice had a wonderful Birthday and was thrilled with every gift she had. We try not to arrange a big party for her as we are always a bit unsure if she will be well enough to do things on the day, this year she was well and enjoyed every last second of her party collapsing into bed when everyone left. We knew there was a chance Alice would need antibiotics as she was getting low after her Birthday and we knew she had a cold, what child doesn't in December, there are lots of viruses around at school. We didn't expect her to need a blood transfusion. During Maintenance we are not suppose to be having transfusions etc. The Doctors have tested her again for the Parvovirus.