The Changing Face of Alice



Now Alice is in Maintenance and her hair is starting to come back I tried to put together a photographic scrap book of the way's Alice has changed over the last 30 weeks of treatment. We have just under 90 weeks left! 

20th to 26th May - DELAYED INTENSIFICATION - Week 18

20th May to 26th May

Well we are back in England. I was quite excited about flying back until I realised it was only me and Mummy coming back. I had to leave Daddy in Gibraltar. It was a bit strange coming back too because we had to get a taxi to Nana's house and when we got there Nana and grandad weren't. Mummy and I had to sleep in their house without them.

On Tuesday some nurses came to Nana's house to take some of my blood because I was going to start them next bit of my treatment and in case my blood wasn't any better than last week they wanted to check it was OK. After they'd gone Mummy and I walked into the village. I tried to walk as far as I could and there were lots of snails and interesting things to look at on our walk.

 

When Nana and Grandad got back home (I was asleep from my long walk)they were with my Auntie and Mummy had packed some of our things so that we could go and stay at Aunty's house. I'm starting the Delayed Intensification and we are staying close to the hospital so I don't have to travel so far everyday.

On Wednesday when I woke up I played in my Aunty's garden (mostly chasing their cat Paddy). At the hospital we found out my blood was doing well and that I was having a little sleep and a lumber puncture. We weren't too long and Uncle came to collect us as normal after work. I wasn't happy because they had put the NG tube in my nose again and I don't like it. When I got to my Aunty's house my big cousin had to go and play cricket and I got to watch DVD's with my other cousin.

Thursday I also had to go into hospital and have 2 different medicines in my wiggles but I didn't take very long at all and I got to go to the Armouries to see my elephant in armour. And I saw a sword fight. The weather wasn't so nice so I sat on the sofa when I got home. I also felt a bit sick.

Friday I had to go to the hospital AGAIN. They gave me an injection in my leg. Auntie came and collected me because I was very tired and it was raining. My Biggest cousin had an exam in the morning when I was at the hospital so she watched DVD's with in in the afternoon whilst it was too wet to play outside. I felt very tired and sick and not very happy. Auntie took me home in her big grey car after tea.

Saturday at Nana's house it was nice and sunny and I played in the garden. I had some lunch and walked all the way to the library. I chose my books but was too tired to walk up the hill to their house. I felt better than before but was still tired and felt a bit sick.

Sunday I started to feel better again and I went to Sunday School and saw my new friends. We played with bubbles after church. I ate lots of lunch, Yorkshire puddings and chicken drumsticks and after lunch we went for a little drive and a walk. I like the sun shine a lot!

Mum Says: It never rains but it pours. Unfortunately whilst I was in Gibraltar my Aunt died and our flights coincided with her funeral so we arrived to an empty house and a bit of a strange mix of emotions. I know we are now on the last part of the treatment which will mean staying long term in the UK. I also know we are facing a difficult time as Alice is already getting worse again and withdrawn more like the start of her treatment. I think every side effect they have listed we have had to a greater or lesser extent. mostly mild side effects. I have to be thankful for that. Unfortunately she is blaming everything on her NG tube including hay-fever which brings it's own set of problems. Although she has her down moments and is obviously getting fed up and is ready to go home and will tell me that she will stay sick and stay at home instead of coming to UK for treatment. She also has her up times and is still smiling. 

Thank God for family and their support I couldn't even begin to imagine doing any of this without them!

20th to 22nd March - INTERIM MAINTENANCE - Week 9

20th March to 22nd March

When I went to the Doctors on Wednesday for my medicine it was very busy and took a long time, but it was a very good day because my blood was very well and we were told that I could go home for a holiday! They had to give me a nasty medicine to take and I don't like it but I decided to be very brave and take it in my mouth.

Nana came with us to the hospital and we got the train home. It was very exciting because I'd never been on a train before.

On Thursday the nurse had to come and put in an NG tube because as soon as I took my medicine it made me sick, it made me very sad and I bit the nurse when she put it in. Mummy wasn't very happy with me for that. My little cousin and Aunty came for lunch and we went to Sure Start to play. That was fun and I forgot all about my tube.

Mummy was very busy making telephone calls and sorting out our flights.

Friday was the the best day because when I woke up there was lots of snow everywhere. I've seen snow but this was the first time there was enough to make a snowman. Mummy and I got out of bed at 7 o'clock in the morning and went out in our pyjamas and snow clothes to make our little snowman.

The problem was that my uncle was snowed in and we had to call a taxi to take us to the train station and he took a long time to get to Nana's house. I got to go on a train and an aeroplane all in one day!

When we got on the aeroplane I found out that one of my sister's friends was on the plane too. That was fun I got to see him and play a lot. 

The journey made me very tired and I fell asleep on the plane. When I woke up I wasn't in Gibraltar I was in Malaga. That made me mad. I wanted to see my Daddy! We had to wait a long time for our bags and then we had to get on a bus. It was better because my sisters friend came with us.

When I got to Gibraltar, at last, Daddy and Joe where there to collect me and Mummy. Daddy bought me noodles from the Chinese and seeing all my toys again was like having Christmas all over again!

 

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.

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