15th to 23rd February
On Friday Daddy came to visit it was very exciting for me to see him. He came very late in the evening and I had to go to bed because I was too tired to stay awake. I did try very hard
We didn't do very much on our first day together because we were just enjoying being together. Daddy and Mummy took me for a walk but I was tired so we didn't go far.
On Sunday we went to my Aunties house and had lunch. We were having problems with my NG tube and when Mummy manged to get it working I'd drunk so much milk that my stomach was Alkaline not Acid. The nurse did laugh when Mummy told her!
I ws feeling much happier having Daddy with me and I really liked playing with Aunties cat, well trying to at least.
On Monday my Key worker came to Nana's house to see all the grown ups and to talk to them about me and my treatment and when I might be able to go home. The community nurse also came to speak to them about what they do and when we can call them.
By Monday night I'd sarted getting a temperature and I was taken to the hospital in Leeds in Grandads car.
I was told that I would have to stay in for 5 days and have antibiotics. I also had to have a blood transfusion whilst I was there. I didn't get to stay on the ward with the other children with cancer as there was no room, Everyone had decided to visit them!
The nurses on the ward I was staying on were really nice to me and Daddy came to visit everyday. The Physiotherapist came to see me and to make sure that I can keep active and to help me build my muscles again so I can play and when I go to Gibraltar I can start going to my dance classes!
The Doctors decided to give me a week off from my chemotherapy and it has made me feel so much better. I am much happier and I'm doing lots of walking around the house and playing like the physiotherapist told me. Mummy has made me a sticker chart so that we can see how many times I can walk up the stairs.
Daddy had to go home on Friday and Aunty came to collect me from the hospital on Saturday. I'm getting used to speaking to my family on skype now and as I feel better now I can play with them!
Mum Says: I don't know how I could have got this far without my family and my parents particularly their patients has been saintly with both me and Alice! We have invaded their house and taken over their lives which I suspect they thought as we (their childern) were all settled now and unlikley to move back home.
It was however such a releif to have Gareth here and to be able to share Alice with him. It is very tiring to be with her when she is so obviously unhappy. Again it came as a supprise to me how badly I needed to see him. I did know however that Alice was desperatly missing him and home. We have seen her mood lighten as the steroid dose had been reducing which is heartening. She was knocked for 6 by a cold! and we have spent 5 days in hospital for something I wouldn't even go to the Doctors with normally. What ever the reason for the break it has done her the world of good, she is happier and more active than I've seen her in a long time, since arriving in England maybe. her appitie it still a little strange but I'm now trying to get it under cotroll a bit more and hope that this week we will be able to move ahead with her treatment. Any delay is obviously heart breaking for us as we are now uncertain when we will get home. We are still facing an uncertain future as there are complications with her treatment due to the Parvovirus and gernrally any delays there maybe in the furture but at least she is now feeling a little more like herself and is starting to make jokes and play! It is heart breaking to see her shuffle around like an old lady, to not be able to stand up if she is on the floor and to watch her crawl to use furniture to pull herself up. She has mastered getting up the stairs but can't carry a dolly up with her and hasn't managed to get down stairs yet. She has however this week started planning her life when she gets home and is talking more about everything and everyone and has had me beaming all day! We are now just going to have to take everyday as it comes and I have stopped looking at the calendar to see if I'll be home for X,Y or Z and will just ahve to keep faith that I will get home soon with Alice.
6th to 14th February
We have been busy getting ready for Nana, Alfred and my Brother Joe's visit.They arrived on Wednesday. Mummy and Grandad went to collect them from the station. I was very excited to see them. It made me happy and excited. I haven't been very happy or excited for a little while now.
They bought lots of gifts and cards from people in Gibraltar.
My hair started to fall out on the day they arrived and I left clumps of hair all over my bed, the floor even on the toilet! I don't really mind I look just like the children at the hospital now.
Joe came to hospital with me and Mummy on Thursday. They saw me very quickly and I only had to have an injection because on Monday when I saw the Doctor my blood was very poorly and I had to go back to the hospital on Tuesday for a blood transfusion. The transfusion was good because I had more energy for Joe's visit AND because I got to leave hospital very quickly on Thursday!
My Nana's, Grandad and Alfred came and met Joe, Mummy and me at the Armouries. It was very exciting as I hadn't been out for a while, but I was very tired. I did get to see the elephant in armour.
My Uncle came and collected Joe, Mummy and me because I still can't go on the train and took us home. I'm not allowed because I can catch infections very easily and we have to be very careful about being with lots of people with colds and viruses at the moment.
Whilst Nana and Alfred were here I got to go to the ducks and feed them and Mummy bought Joe some new clothes.
Mummy and Joe went to the cinema together as a treat for Joe, I think they had Pizza and they were gone all afternoon. I think Joe had fun with Mummy, he doesn't get to see her very much whilst I am here having treatment.
Whilst Joe has been here he has been sleeping in Mummy's bed and she is sleeping in mine so that we can all be together at night. I did try and sneak into Joe's bed when he was in his own room for a little while but it is more fun sharing a room and Joe holds my hand when I take my medicines.
On Joe's last night we went to my Uncles for dinner and I got to eat Chinese chicken noodles from the take away. I had a really special week with everyone here and it was fun to see them all, it made me a bit sad but mostly happy. I know when I get to go back to Gibraltar that I can visit Nana's house and that Alfred will take me for a little drive in his car.
On Wednesday when I got up Joe wasn't here anymore and I had to go to the hospital without eating. This made me sad and grumpy! I was very hungry. They gave me magic milk and put me to sleep - because I had my wiggilies I didn't have to have the smelly mask. When I woe up I was allowed to eat and drink. The nurse gave me a ham sandwich!
It was a very long day because whilst I'd been in hospital and sleeping it had snowed lots and lots and everyone had decided to leave work at the same time. It took Uncle over 2 hours to drive to the hospital. It normal only take 5 minutes! Mummy took me back to the day unit and borrowed a Nintendo DS with Peppa Pig so I didn't get bored. I had to give it back though when I went back the next day.
On Thursday we were really quick but Uncle couldn't collect us too early as he was giving blood. He has special blood because it is universal and not poorly like mine. Mummy and I went to the Armouries again so that I could go and see my Elephant again and we went for a walk and saw a canal.
Mum Says: It was beyond good to see Joe and some of the family from Gibraltar. It is amazing how you can block off how much you are missing someone until you see them I suppose that I had been so focused on Alice that seeing Joe just bought home how much I'm missing out on being seperated from my family. I had a day out with Joe which was so much fun! We had the whole cinema to ourselves and even managed to get a free pizza out of it. I spent far to much money and spoiled him as much as I could. I will be missing out on spending Joe's birthday with him this year, something that I've never done! Again I was overwhelmed by the cards and preasents from people in Gibraltar, the sheer number of phone calls and messages that not only I but my parents and in-laws are getting has been phenominal!
Alice has lost most of her hair now but I can't say that it bothers me as Alice is so unphased by it all, possibly becasue of her age, but when we were out and about in the Armouries on our own Alice was quite happy to take her hat off and be bald! She still has enough hair to play with when she is tired or upset and she still has a loud enough voice when she doesn't want to do something so something of Alice is still in there but the steroid treatment has really taken it's toll on her as she is bearly walking or smiling, but she still can do both which is the most important thing!
I was glad of the long day at hospital when Joe went back as it didn't leave me dwelling on the fact he wasn't in England anymore!
31st January to 5th February
One Wednesday my Uncle came to collect me in the morning in his car to take me to a new hospital in Leeds, Leeds General Infirmary. I had to go again on Thursday. I liked the new hospital a lot and the people there were really nice and friendly.
I like the new hospital because I only have to go for a day then I get to come home. I don't like going when I can't eat because they are giving me an anaesthetic, put me to sleep for a little while.
They have lots of games and puzzles for me to play at the hospital and I get to do painting and colouring and I bring something home to Nana every time I go.
On Wednesday when I met the Doctor he asked me questions like where do you live? and How old are you? I told him I live at home and that I was 5, well I looked 5 with my new haircut!
He told me that because I was being so sick with the medicine I was taking that I was going to have a tube put in my nose again.
This time I wasn't so scared and I was able to talk. I also ate and drank normally and it didn't make me as sad as before. It worked and I stopped being so sick with my medicine!
When I got home I went out to play and blow bubbles in the garden.
I had to go to the hospital for an injection one day when my uncle came to collect me and they did a blood test. I was going to have to have another blood transfusion but this time I asked my Granddad to stay with me and hold my hand at the hospital and I got to go home after lunch!
Mum Says: Starting at the new hospital was a relief. The Staff were all lovely. I was once again bombarded with papers, names and telephone numbers - many of which I still don't know. It was good to feel that I was starting to understand how the treatment was going to work, what terminologies they were using meant and that generally we aren't the only people going through this. So may parents are there regularly going trough what we are. I did feel robbed not only of my child's health but of my child. Alice has been so with drawn and quiet and not herself. We were having problems with her sleeping at night, the hunger that would wake her at 4 in the morning and the strange food cravings, one week chicken nuggets the next mashed potato with cheese. Tomato soup for breakfast and then 20 little nibbles throughout the day not 3 meals. There was one incident at the hospital. I'd taken her the nuggets as requested for the last 3 days and a little girl had quavers. Alice would not eat until she could have quavers and then ate 3 packets. we bought her quavers and she hasn't eaten a packet since! Having the NG Tube put back in was a big disappointment to us as she hadn't spoke, eaten or smiled for 3 days when they put it in at GOSH but she obviously felt ill enough to need it as this time she was almost used to it by the time we got home!
