One Year On

30th November 2012 Alice had her first life saving blood transfusion and our journey began ....

Since then I've had approximately 365 sleepless nights. Alice has had  countless blood tests and Doctors appointments. 8 blood transfusion, 2 platelet transfusions, 9 General aesthetics, 3 chest x-rays, 2 heart traces, 1 ECG,1 CT scan and 1 MRI. She has had 2 ultrasound scans, 1 on her spleen and 1 on her face. She has taken countless drugs, chemotherapy, antibiotics and drugs to counteract the side effects of the last drug given. We have spent approximately 50 nights in hospital taken 8 flights,  she has spent 21 weeks in Gibraltar, Alice is on week 45 of her treatment. She has managed 23 days at nursery. She's had her first school photo and has taken her first ballet exam. Alice is 2 days away from turning 4

2013 has been a difficult year for our family, we have been physically separated and have had to come to terms with the unthinkable, our baby has cancer. Still with this we have also been blessed in so many ways;
This time last year our life was full of uncertainty, we had a very sick child, but she had been given the blood she needed, another time another place and we might not have been so fortunate, our story could have ended.
We have been supported along the way by fantastic Doctors and Nurses at every hospital we've been to. In Gibraltar the Nurses and Doctors on Rainbow Ward have made us feel welcome, cared for and cared about. The specialists at Leeds have worked hard for our family, making us feel like our daughter is their priority and have armed us with information, they have given us a future with Alice.
The world is full of good people, friend, family and complete strangers have taken our daughter to heart sent gifts of money, love and prayers.
Our family. At every stage of our journey our families have been there to support us they have been there with practical help as well as supporting us emotionally, they have opened up their homes to us or have just been their with a kind word and a hug.
We have friends, who no matter what they are going through in their lives never forgot us.
We have food on the table, clothes on our backs and a roof over our heads.
We have been able to laugh.
We are together.
Now we are home there are 100 small things that we took for granted before that we now find ourselves thankful for, Alice going to the park, Alice riding her bike going to dance class and going to school.

There are still times of uncertainty, we are still fearful almost daily for Alice's health and what the future holds for us, but a year has passed and we are still standing and able to Iook forward to 2014.

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!