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! 

5th to 18th August - MAINTENANCE - Weeks 29 & 30

5th to 18th August

Things have started really well for me. Daddy is here! and Joe and Mummy it is so much fun and my hair is coming back and it is growing really fast!

I started the week feeling really well and on the Tuesday Daddy was here I went to a big park at Oakwell Hall and took a picnic with Daddy and Joe and My Aunties and Uncle and 2 of my cousins. I like going out with my little cousin because she is only just younger than me so we run around together and ride in her special wagon. I always like taking a picnic out and we had a dog come to visit us when we were eating. I think he wanted my Chicken.

Wednesday was exciting too because Daddy took me to the hospital in Grandad's car and he saw all my friends and helped me on the DS instead of Mummy. I had to have an injection in my wigglies as well as starting on my grumpy minty medicine. By the evening when we got home I wasn't feeling quite as well as I had been and as always Thursday I was tired and feeling not quite so well.

The Doctor was so pleased with my blood tests on Wednesday that she gave me a week off! I don't need to have another blood test until the 21st August. Which is a bit exciting.

Daddy and Joe went home on Friday which made me sad but because we are sorting out all our stuff and getting ready to pack up I'm not as sad as everyone thought I'd be. It was also very exciting to be woken up in the middle of the night for a car ride in my pyjamas to take Daddy and Joe to the train station.

 

We have been trying to do just normal things every day and have been going to the shops and park and library. I've got a bit of a cold again, but I haven't had a temperature. Mummy is trying to let me do things but I think she is worried that if I get sick I might be in hospital and then we might not be able to go home on time.

I have been practicing my cooking and made biscuits this week. I decided to share them because that is a good thing to do and because Mummy bought me my plimsolls for school.

My big cousin also got her A Level results and she is very clever she got 3 B's and will be going to university in September like my big sister Toni.

I haven't been as grumpy this month with my medicine so Mummy, Nana and Grandad are happy, there has been a lot less crying and shouting. I do still like Mummy to come to bed with me and cuddle because sometimes I dream things and sometimes I just like her cuddling me.

One of the most exciting things to happen this week is that Nana and Grandad bought me a little bike, it was in the second hand shop and it is red and blue and yellow and has winnie the pooh and stabilizers. I'm loving whizzing about again. I've really missed my bike!

    

I miss my Daddy, Joe and Toni. I know that I will be seeing them all soon but it is starting to feel like a long time. I keep asking Mummy when Daddy is coming to rescue me. She says soon.

Mum Says: What a joy it was to have Gareth here and for Alice to be well and able to go out for a day as a family (almost complete) Gareth also came over with some exciting news about a new job he has been offered. September sees a lot of New Starts for out Family, Alice at the School Nursery, Toni at University and Gareth with a new job. It will also be the start of Alice and I being back at home in Gibraltar on maintenance. I have a saying painted on the wall in our hall at home "Life is not about waiting for the storm to pass it is about learning to dance in the rain" This year has been one of our stormiest but it is coming to an end and it feels like the worst of the rain has passed. I will have to wait until Christmas to have my family back under one roof. We are still worrying about money and the practicalities of dealing with Alice's illness. But as I see her improve and the speed with which she comes back to herself after treatment it's all worth while. Now when Alice asks when is Daddy coming to rescue her my heart doesn't drop I can honestly say soon!

My Church Magazine Article!

I was asked to write a little something for the Church Magazine about Alice and what has happened over the last few months. As I put time and effort into writing it I thought I'd post it here too!

 

We had initially thought Alice was coming down with a nasty virus in late November 2012. But as
she got progressively worse we took her to hospital. Thank God the Doctors took me seriously when I told them I felt there was something very wrong.   She was admitted and given a drip with fluids and the Doctors took blood tests. Alice was very anaemic and needed a blood transfusion immediately. It was very frightening to see her so ill and to realise that she very nearly didn’t make it to her 3^rd Birthday. 

Blood tests showed a virus called the parvovirus , which can cause anaemia. But Alice just couldn’t clear it. So in January a decision was made and we were sent to Great Ormond Street Hospital in London where Alice had a bone marrow aspiration which would finally confirm what was causing the problems with her blood.

When we were given the diagnosis of ALL - Acute Lymphoblastic Leukaemia on 16^th January 2013,  we went into over drive trying to process all the information given by the doctors as well as trying to work out the best for us as a family on a practical level.

Having discussed as much as we could with Doctors we requested Alice be moved to Leeds so that I could move in with my parents (rather than a rented room in London) and concentrate on getting Alice better. All went smoothly with the transfer to Leeds; Gibraltar had no objections.

Treatment started within Hours of being given her diagnosis and her first chemotherapy was given the same day.  We started to loose ‘our little Alice’ as the steroids took over and it felt as if we had been robbed of both her health and her personality.

Throughout Alice was still fighting the Parvovirus which mimics leukaemia and the doctors were left scratching their head often over her blood counts and how poorly she still was. We asked for more concentrated prayer at this point to clear her of the parvovirus.

Once off the large doses of steroids Alice started to return to us and after a week in hospital (first of many) on IV Antibiotics she bounced back to her normal smiling self. At this time we also saw an improvement in her blood counts and eventually she tested clear of the parvovirus, Thank the Lord!

Physically Alice has taken all changes in her stride, loosing hair, growing hair and loosing it completely, gaining weight and loosing weight, having problems with walking, loosing the ability to run and jump, smiling through the pain, discomfort and fatigue.

We took any opportunity to get home to Gibraltar and have managed 2 visits. On our second trip we spent a week in hospital once again on IV Antibiotics.

Fresh from our stay in hospital in Gibraltar we started the most difficult phase of treatment. Alice was on lots of high dose chemotherapy for around 6 weeks.  During this time we had another 11 days in hospital due to a flu virus and a reaction to one of her drugs which caused her heart rate to slow.

We are now in the final and longest phase of treatment. Gibraltar and Leeds hospitals have worked together so that we can go home and have our monthly chemotherapy in Gibraltar, our daily dose at bed time will continue at home and 12 weekly visits to the Leeds will be needed for chemotherapy injections into Alice’s spine.

We have so much to thank God for: The number of people praying and showing such concern for Alice has been overwhelming:  The love and support from family and friends helping us to stay positive (mostly) about Alice’s treatment.

There have been times which were very challenging and Alice hasn’t always been a model child but we have always found the strength to continue and on occasions we have actually enjoyed our time here in the UK!

We continue to ask for your prayers and support for the next challenges we face, sending Toni off to University in September, Alice Staring at the School Nursery, and for all of us adapting to living with leukaemia together again as a family.

 

 

Chester Zoo

The Candlelighters who look after me at the hospital by bringing me special food and preparing lots of arts and crafts for us so we don't get bored at the hospital arranged a special trip for the children and their families to go to Chester Zoo.

Mummy put our names down a long time ago to go on the trip with Joe.

29th July 2013

In the morning we got up and got ready. Put our picnic in our bag and put our rain coats in the pushchair ready for the zoo.

Auntie drove us to where we were suppose to meet all the people but we couldn't see anyone and there didn't seem to be a coach. So we had to drive around a little bit. Eventually we found our way back to where we had started and saw some of my friends from the hospital. My friend the lady who bought me sweeties and crisps everyday on the ward was there and my friend who does sticking and glittering with me on Wednesdays was also there!

We got on the coach and were off to the zoo!

On our way there it rained and Mummy wanted me to sleep a little bit, but I couldn't so Joe and I played and played on the coach.

At the zoo there were lots of things to see and we were given a map. I decided to try and give the directions. I found the Spider Monkeys and we saw them having their lunch. Spider Monkeys eat fruit and vegetables!

We walked a lot all day. We also had a turn on the special train called a mono rail. It didn't rain at all that day at the zoo although there was thunder!

I saw lots of animals I liked the bats in the dark bat house and the Elephants were very BIG and we saw some zebra and a lion. But my favourite was the Monkeys. I wanted to go and see the penguins but they were too smelly and we decided not to go (Since having my chemotherapy I find everything smelly including Joe)

We had out picnic and went to the shop too. Joe bought a drum like he used at school for African Drumming - just a little one he has to take it on the airplane.

Joe and I really liked all the giant bugs they had on display and we sat on a giant ladybird and pretended we had shrunk to teenie tiny.

I liked the zoo a lot and it wore me out on the way home all the children slept on the coach. It was fun to see all these people away from the hospital and seeing the children like me out having fun not poorly or bored at the hospital. 

On Tuesday I slept a lot because I was so exhausted from my trip to Chester Zoo.

21st July to 4th August - MAINTENANCE - Weeks 27 & 28

21st July to 4th August

I have had lots of fun with Joe and Toni so I was sad when Toni had to go home. Joe is still here to play with and we are getting in trouble for being too excited and silly.

When I went to hospital on Wednesday Joe decided to stay with Nana and Grandad as I had to have a sleep. It is always a long day when I have to have my magic milk and injection in my back but they put me first on the list!! I was finished by lunch time and we were home in no time at all ... Well compared to normal hospital days. When I got home Joe was still out with Nana they had gone to Scarborough for the day.

As a treat for Joe and me my Auntie invited us to stay at her house for a week! With Mummy too. It was lots of fun being somewhere different and going out to new places everyday, we went on boats, little trains and to parks. We played in the gardenn, practised our tennis and basket ball. Mummy and I went exploring whilst Auntie and my Cousin took Joe to play golf and we went to see my big cousin at her work and I played with their cat everyday even if he didn't want me too. We even went on a as pecial trip to the zoo.

I am getting better now at being left alone by Mummy I let her sit in a different room from me and everything at Aunties house. I even went out with Auntie on my own and Mummy left me and went to the hairdressers with my cousin. I am feeling less grumpy but I do wish sometimes the grown-ups would listen to me more when I'm shouting at them. I am very important!

Mummy and I had both been feeling a bit fed up because we didn't really know what was happening about going home because my blood count just wasn't good enough after my intensification. But when Auntie took me to hospital after my week at her house we had very good news I could finally start on my daily chemotherapy which I am going to have to take for the full 2 years of maintenance oh and my green medicine on Saturdays. I had been waiting so long to start the medicine that I was so excited.

My big cousins and been treating Joe to a trip to the cinema and a pizza whilst I was at the hospital so we all met up at Nana and Grandad's house they were pleased for me too. 

I think Joe has liked staying at my Aunties house too because my cousin has a play station 3! It has been like a little holiday for us all.

Most exciting is that Daddy is coming to stay for a week.

Mum Says:  Toni has gone back to Gibraltar with a long list of jobs to do to get ready for University. I'd always assumed that I would be around to help her when the time came but she has shown that she is perfectly capable of doing all this on her own as well as work and cook meals for her Dad and Brother. We were all getting down as we were hoping to be going home in August so a break at my Sisters it what we all needed and Joe got to spend time with his cousins as well as getting spoilt by his Auntie and finally we have started on the maintenance med's which means that we can start to look forward to getting home and now need to sit down and see when we will be able to get home and with Gareth's visit too we are all feeling a bit more optimistic!