15th to 23rd February - INDUCTION - Week 5

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 - INDUCTION - Week 4

 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 Febrary - INDUCTION - Week 3

 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!

25th to 30th January - INDUCTION -Week 2

25th to 30th January

On Friday 25th January my Uncle came and rescued me from Great Ormond Street and took me to my Nana and Granddad's House. We had to say goodbye to our room and my new friends at Great Ormond Street, but both Mummy and I were glad to be leaving. Daddy had to go home to Gibraltar on the Friday to check on my big brother and sister and to look after our cat Hiccup. My uncle came in his big white car and we spent all day driving. 
 
I felt quite sick on that day and I wasn't in a good mood.

I saw lots of snow and it was very cold when we got out of the car. 

On Saturday I felt well enough to go out in the snow with Grandad and we did lots of stamping and leaving foot prints with my new snow boots. I'd never had a pair of snow boots before! I hadn't see snow before coming to England. Now I've seen lots!

At Nana and Granddad's house we had lots of visits from my Aunties and Uncles living in England and my Cousins. We even got to have a birthday cake and my cousin blew out the candles!

I was sick quite a lot the first few days I was at Nana and Granddad's house. It might have been because of my Chemotherapy. It might have been because my medicines tasted horrible! 

I had my hair cut by a nice lady who came to Nana's house. I like my normal hairdresser better she brings her children to play with me. I liked my haircut it made me look very grown up, like maybe 5. Granddad especially liked my haircut and Mummy said that if we left it much longer she'd have lost me under my hair!

Mum Says: This point was quite difficult for me. Gareth had left and gone back to Gibraltar and the other children. I was now at Mum and Dad's house with a very sick child who wasn't keeping food or medicines in and was now getting more and more distressed everytime I had to give her medicines because she knew they were making her sick and therfore making her sick! My Parents carpet was being cleaned regularly! Alice was flitting from one food craving to another. She was still very unhappy, although much m ore relaxed after leaving the hospital and I was still just getting through. Every task I set my self to complete that day was not getting done. Alice's energy levels were low and motivating her was getting more difficult. I was in Limbo because we hadn't yet started with the new hospital and most of what I was going on was from our early discussions at GOSH and reading the booklets which we had been given.

16th to 24th January - INDUCTION - Week 1

16th - 24th January

I didn't quite know how long I'd be in England or at Great Ormond Street for and I really thought I'd be home soon.

On Wednesday 16th January 2013 I was taken for a small operation called a bone marrow aspiration. The Doctors took alittle bit of my Bone Marrow and looked at it to see why my blood was so poorly.

On that same afternoon the Doctors came to speak to my Mummy and Daddy. I stayed in my room with Nana and Grandad. When Mummy and Daddy had spoken to the Doctor they were very sad and cried because the Doctor had told them I have something called Leukaemia, ALL, Acute lymphoblastic Leukaemia, which means that I have a kind of cancer in my blood. That is what had been making my blood so poorly!

They also told me that it is very easy to treat and nearly all children who get it get better. It did mean that I would have to stay in England for a long time and I would probably feel very sick for a long time because of the drugs called Chemotherapy that the Doctors would have to give me.

Nana and Grandad stayed with us in London for the first few days to help Mummy and Daddy and find out what would be happening as we had decided that it would be better to move to Nana and Grandads house in Yorkshire and have my treatment in Leeds.

When Nana and Grandad left it was much quieter at the hospital but the Doctors still did lots of test and took my blood very often. I didn't like having drips and being caught so that I had to stay in bed most of the time. I started with 3 types of medicine and they all tasted nasty! I had to eat chocolate or clean my teeth to take the taste away.

Mummy had a bed in my room with me and I had lots of toys and books. My cousin loaned me a DVD player to use when i was in hospital but I mostly watched Toy Story 3 on the television in my room or played games on the same television!

A lady came to play with me and to paint and make things. One day my bed was so full of glitter that Mummy had to change my Sheets and blankets!

Mostly I just want to go home.

I had to have a tube put in my nose to my tummy so that I could have water and milk. I really didn't like it and wouldn't talk or eat or drink whilst I had it. I did wear a scarf to make my neck feel better. I was very sad and scared whilst I had it in and it made Mummy and Daddy very sad too.

The Doctors did take it out because I wanted to go home so much that I promised to eat and drink and take my medicine.

I had a little operation and had something called a port-a-cath fitted. This is so they can give me drugs and chemotherapy without having to use cannula's in a vein. They used something called wigglies to put medicine and they stick out of my body, but when I leave the hospital they are taken out and it looks like there is nothing in me.

Mummy told me that whilst I was in Great Ormond Street that my Doctor from Gibraltar came to visit me, I was asleep.

I was in the hospital for 10 days and lots of people came to visit and play with me. The people from Radio Lollipop came and blew bubbles for me and played Guess Who, we made planes. A Lady came and did sticking and painting with me so Mummy and Daddy could have a break and go for lunch. I made friends with the little girl in the room next door, we weren't able to leave our rooms so we drew pictures for each other on the window between our rooms. My favourite visitor was my friend lady who who came to play even when I was very sad and not talking.. She even gave me a toy horse when I was very ill and wanted to be left alone. she was my favourite person at GOSH.

Mum Says: It is very difficult to put into words how I felt and exactly what it was like. I know that we had to tell people what the diagnosis was and when I sent a message to people I couldn't read their replys right away. I was panicking in Costa Coffee as they were comimg through so fast and it made it all too real. We were kind of in a dream world, having to absorb vast amounts of information and then deal with a very unhappy 3 year old. She obviously knew something was happening but not quite what and she still hasn't fully grasped what is happening to her. Everyone has been so supportive and helpful and understanding that we have just been overwhelmed with everyones kindness, in Gibraltar the support that we've had and from the medical staff at GOSH not to mention the way our families have come together to support us. But Alice being sad is the over whelming memory. She has always been such a happy healthy child and we were suddenly in one afternoon robbed of that. But as parents we are unable to wallow and feel sorry for what we have lost we now have the job of getting her through this whole experiance, healthy, happy and as Alice as possible.

Off to England we go

7th to 15th January

In January the Doctors decided that needed to go to England for some tests. They wanted to know why my blood was still ill.

I was quite excited about going on the aeroplane and seeing my family in England. especially as I hadn't been going to nursery for 9 weeks and had missed lots of Birthday parties.

When I got to England Mummy and Daddy had booked a flat for us to stay in which was exciting, I was exploring the flat making lots of noise and waiting for Nana to arrive. I had seen snow for the first time at the airport, although I wasn't keen on it, and was pleased to be putting on my new pyjamas that my Aunty and Uncle had given me.

When I was going to bed I had a temperature and Mummy called the hospital, Great Ormond Street. They told her to take me straight the the local Accident and Emergency at UCLH. I missed my first test at GOSH as I was having antibiotics and a blood transfusion on Tuesday morning. Mummy stayed with me and Nana and Daddy visited. My Uncle even came to see me! I had been painting whilst I waited to see what was happening with me and if GOSH had a bed. I gave the best painting, a dragon, to Uncle for my little cousin.

When it was time a man came with a wheel chair to take me in a special little ambulance to GOSH. it was very exciting to go in an ambulance and I made the nice man take me all the way to the ward in the wheel chair even though I could walk! 

At Great Ormond Street there was another visitor my Grandad!

Mum Says: We knew there was a risk to flying with Alice when she was suffering with Neutropenia but didn't expect to be in hospital as soon as we arrived in England. We arrived with mixed emotions knowing that we were going to get an answer but also being aware we might be told something we didn't really want to hear.

I'm a puzzle

I carried on having blood tests everyweek on a Monday. Some got better but mostly they got worse. 

The week before Christmas I think about 17th December I was very ill again and had to have another blood transfusion and some immunoglobulin. 

I had been tested for a virus called the Parvovirus and it was positive,but I just wasn't managing to fight it off myself. At Christmas we had to stay away from lots of people and shops because I was suffering from Neutropenia and it meant that I couldn't fight infections.


The Doctors were puzzled by what was happening to me. I carried on having blood tests every Monday with my friend Audrey at the hospital.

Looking for a carrot for Rudolf

I had fun at Christmas with my family and I got a new scooter!

  

Kim Says:  We had decided to make Christmas really quiet and special this year. Although we couldn't have lots of people over we managed to go out a little bit everyday when it was quiet with Alice and her scooter or her bike. The other children did all they could to help us make Christmas great and after all the worry it was a relief to have something to celebrate! It did look like there was an improvement on New Years Eve which gave us one night of relaxation at least. We knew that the way things were we could be facing a challanging 2013!

December 2012

December 2012

My name is Alice and just before I turned 3 I got very poorly. I was very tired and I kept falling asleep on the sofa. One Saturday at the end of November 2012 I had a high temperature and an ear ache so Mummy took me to the Doctors. She gave me antibiotics to make it better and we all thought that was that.

I didn't get better and Mummy and Daddy had to take me to the hospital later in the week and I was given something called a drip with fluids in and they took blood from me to test. They told us that my blood was very poorly and that I needed a blood transfusion. My red blood cells weren't getting made properly and there weren't enough. It is called anaemia and the Doctors started working hard to find out why my blood was so poorly.

My Birthday was only a couple of days after my blood transfusion but the Doctors said I could go home and I was very happy. My Aunty made me a smarties Birthday cake and we went to my Nana's house with my cousins and my big brother and sister to celebrate.

Mum Says: Seeing Alice so ill was very frightening for us as parents and my eldest daughter particularly was aware of how sick Alice was. We didn't know quite what was going on but had been reassured that they would find out and get to the bottom of it all. The Doctors and nurses were amazing and did everything they could to reassure us. Alice had a lovely Birthday in the end and we were all just glad to have her home. She very nearly didn't make it to 3 years old!

Professional Picture by Ana Vas