And on We Plod - Weeks 53 to 56

Things have been a bit quiet for me this month. I haven't been to school, I've been neutropenic and there is both chicken pox and swine flu going around. My teacher sent home some work for me, Mummy and I play schools in the morning. Altough I did manage to get to a ballet lesson this month.

When I had my vincristine this month I had a bit of a cold but not too much. I got very itchy and scratched up a petechial rash, so I had to have a blood test, my platelets were a bit low but not so bad that I needed topping up or anything. I wasn't feeling too good but I seemed to be doing well at fighting the virus all by myself. I had something called emzimes in my blood, from my liver, which were making me itchy, they went away all by themselves.

On Wednesday I went and had my hair cut, just a little bit but it made it all neat and tidy and I was very, very happy. I've been waiting since Christmas to go and have it done! I was doing really well and seemed much better. But when I went to bed my temperature went very high and I had to go to hospital, again. Daddy had a sleep over with me on Friday night which is always exciting, but I had to have another blood transfusion on Friday too. Mummy and Daddy weren't very surprised I'd been super grumpy! The best most exciting bit about being in hospital this time was making a tent in my room with blankets. I tried to sleep in it but the floor was too cold and  hard and it was just too exciting!

Because I had been in hospital we had to cancel going out for Nana's birthday. Luckily there are lots of birthday's in February. So we did go out for my Uncles birthday and at night, in the dark AND we went on another day when I was feeling better for Lunch with Nana.

But the most exciting thing to happen this month was my friend Nurse had a baby! It was a little girl and she was born whilst I was staying on Rainbow Ward.  When I was having my IVIG the next week my friend Nurse bought the baby to hospital and she let me hold her for so long I was very happy and I told my Daddy that we could have a baby and it could sleep in the lounge or maybe next to me in my room, except Toni has to sleep there. Daddy said NO, absolutely not.

Mum Says: We are getting used to our trips in and out of hospital, Alice makes a fuss to start off with but is happy enough when she gets there generally and we are getting good at finding ways to fill our time. Fortunately Gibraltar being small means that I get time away from the ward when my Mother-in-law comes and stays with Alice and Gareth pops in during his lunch time. This month has dragged a bit for  us stuck in the house because it's been wet and windy and a bit unpleasant outside. I've been a bit under the weather too and on antibiotics so that has also made the month drag a bit for us. Alice's new hair has started tinning a bit this month which is depressing for us , Gareth is most upset as it's his job to bath her and wash her hair each evening and that tends to be when it comes out, having said that Alice really doesn't care! Still we are hoping things improve now and we get back to school and 'normal'. Still being at home has meant that we have worked on Alice's behaviour and she is sleeping in her bed on her own more often.YAY sleep!

Birthdays and Blood Transfusions - Maintenance - Week 46

1st to 7th December

I've had a very exciting time celebrating my Birthday. On Sunday we had a Mad Hatters Tea Party at my house with my cousins and some friends. It was lots of fun. I had a teapot birthday cake, I wore my Alice in Wonderland dress and we played pass the parcel, but mostly we made lots of noise and mess, we even hid under my sisters bed if you take the draws out from under her bed 4 of us fit under the bed!

Monday was my actual Birthday and I went to school which is always fun and Mummy took me to McDonalds for lunch, just us 2. When Daddy came home from work we put Skype on to talk to Nana and Grandad in England and I opened MORE presents from Mummy and Daddy and my family in England. It is so much fun being 4!

On Wednesday I went to hospital to have my blood tests, we were hoping to make it to my dance class in the afternoon, although I had been tired for a few days it was hard to tell if it was because I was excited or ill. When I got to Rainbow Ward they made me wear a special Birthday Hat and gave me a present, a game and they sang to me and I had balloons. I wore my new special silver shoes I had for my Birthday for the nurses to see.

My blood tests weren't very good and I needed to have another blood transfusion. So the Nurses called Mummy for me to go and see them on Friday.

Mummy and I sorted out all my birthday presents and I took all the ones I wanted to play with whilst I had my blood. It takes a LONG time.

The problem this time was that I had a temperature when I finished having my blood and the Doctor said I was going to have to stay with them for a few days on IV Antibiotics. I was not happy about that at all, but Mummy and Daddy both had sleep overs with me so that made it better and I had my new toys to play with, and I got to put the star on top of the Christmas tree in the play room.

Mum Says: Alice had a wonderful Birthday and was thrilled with every gift she had. We try not to arrange a big party for her as we are always a bit unsure if she will be well enough to do things on the day, this year she was well and enjoyed every last second of her party collapsing into bed when everyone left. We knew there was a chance Alice would need antibiotics as she was getting low after her Birthday and we knew she had a cold, what child doesn't in December, there are lots of viruses around at school. We didn't expect her to need a blood transfusion. During Maintenance we are not suppose to be having transfusions etc. The Doctors have tested her again for the Parvovirus.

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.

21st October to 3rd November - MAINTENANCE - Weeks 40 & 41

21st October to 3rd November

I started back at school on Monday and came home with some bruises, Mummy kept an eye on me and on Tuesday it was the same. So when i went to the hospital on Wednesday Mummy asked if they could do a blood count because I wasn't very well, I wasn't supposed to have one.

It was all a bit surprising to find out that everything was low and that I'd need a blood transfusion. We had to wait for my blood to come from England because of something special and I couldn't go back to school. 

On Friday I had the transfusion and felt so much better AND it was the start of half term so even Joe was happy!

I liked half term because Joe stayed at home with me everyday and we did exciting things. On Monday we went on a boat trip in the

bay and saw the dolphins. On Tuesday and Friday Joe had a friend over to play on Wednesday I had to go to the hospital and have my monthly chemotherapy in my wigglies. When they did my blood test it wasn't completely better so I don't have to take my brown medicine every day which means I can eat late! 

Thursday it was Halloween and both Joe and I went to parties!

I've never been to a Halloween party and I liked it a lot I wore my snow white fancy dress which is my best favourite one and my Cousins came too. We had food, but I didn't really want to eat and then we played games. The lady who arranged to party made us dance and do silly things. They made my Mummy wrap a lady up in toilet paper like a mummy. But she wasn't very good at it.

Best and most special of all they gave me a prize, a silver trophy, for being a brave girl and taking my medicines nicely and going to hospital and being good. I was feeling very tired but getting the prize was so special I didn't feel sad or tired any more!

Joe and Daddy liked my prize a lot. I can't wait to go to school and tell them about my week off I am feeling so much better. 


Mum Says: It has been a bit up and down for us. Alice was getting quite low and when her bruises started appearing we thought, here we go again. It wasn't quite as we thought in as much as she didn't need platelets but she was very anaemic and needed blood so we had an afternoon on the ward hooked up or caught as Alice likes to say. I think we spend too much time at the hospital at the moment and hope that this last unexpected trip for some time. We want only scheduled trips to the Hospital for a while at least. Having said that the blood seemed to have done Alice nothing but good, she isn't napping in the day and is bright and interested. She is also off her daily chemotherapy which also helps to perk her up and she is making the most of late snacks before bed and milky drinks. The Dolphins should have been the highlight of our week how many people can pop out for an afternoon and a boat and see dolphins? But the Halloween party trumped it all. Alice was so thrilled with the prize and having her photo taken with the lady that organised they party. I don't think they will every know how happy Alice was (and still is) to be singled out in a positive way after the year she's had she really does deserve a prize!

24th to 30th June - DELAYED INTENSIFICATION - Week 23

24th to 30th June

My week started well. My little cousin came to play all day. We made lots of mess with feathers and glitter and glue. I made peg dolls

and we both made fridge magnets. We had tea together and I gave my cousin a onesie I'd grown out of to wear home after our bath! My cousin had made us all a little cake which I really enjoyed eating.

On Tuesday we went to the library which was really good. I borrowed a cookery book to see if making new food might help me to eat more and 3 story books. I walked a long way into town with my toy pushchair. It made me very tired and my legs hurt but I was very proud of myself. I wanted to stay in town for a drink but Mummy said no. That made me very grumpy and I shouted a lot. We still went home.

Wednesday was hospital day. I was supposed to be going in for a quick appointment, to have my wigglies in and an injection. My Auntie took me and Mummy. When I had my blood tested I was very anaemic and had to have a blood transfusion. As we were already there and it was early we decided to wait and have it on the same day. My key worker came and spoke to Mummy to see how we were and to find out if we'd heard from the hospital in Gibraltar at all, about us going home and about Maintenance! Mummy was very pleased to get a bit of paper from the Doctor explaining maintenance. The Dietitian also came to see us. She is very happy I've put weight on 400 grams in a week. I only have 3 more night feeds and I should be able to stop as long as I keep trying to eat! My Auntie stayed with Mummy and me at the hospital all day and we played games together whilst I had my blood. Mummy had to buy me chips because she hadn't bought any lunch for me. I didn't mind at all.

My big cousin passed her driving test on Wednesday so I made her a card. I was very pleased with it when it was finished 

Because I am very neutropenic again and the nurses are coming to our house everyday to give me an injection we haven't done very much. I have been more busy playing with my toys and making things. I am even able to sit on the floor to play and get myself up without (much) help.

The injections still make me tired and on Thursday I was very sick. In fact I was so sick my tube came out again. This time I promised Mummy I would take my medicine's very nicely (I don't have so many now) and that I would eat and drink very well. So she didn't ask the nurse to put the tube back in. Although I shouted so much about about Mummy getting the wrong top out on Friday Nana thought my tube was being put back in.

I find it hard to sleep some nights and am starting to really want to get home. I really don't like being sick anymore. 

Still on Sunday I went to my Aunties house and played in her garden, chased her cat, played Cooking Mamma on the WII and had my toenails painted blue! Very exciting.

Mum Says: We have started to see some improvements with Alice this week. It is always good when things improve like putting on weight. I am still continuously worried about her temperature, bruising, bleeding and weight, diet and mood swings. Alice is not quite herself and it is now that I begin to wonder if she will ever quite get back to how she was before. Alice has started to talk more about everything and it is amazing how much she knows and remembers about what is happening to her.  On a positive note we are now heading towards her maintenance and it feels like we are moving more rapidly towards the light at the end of the tunnel. Unfortunately it also means working out what needs to get back to Gibraltar and how it is going to get there. It is amazing how much stuff you can accumulate in 20 odd weeks!

3rd June to 9th June - DELAYED INTENSIFICATION - Week 20

3rd June to 9th June

This week has been rubbish. On Monday morning I took a long time to wake up and when I did Mummy took my temperature it was very high and going up! Mummy phoned the hospital and I had to go straight there.

I was admitted straight away, but I did have to wait for a long time for them to get a bed ready for me as I have to be on my own. I am very neutropenic and I have a runny nose and a cough. The nurses had to take lots of blood samples from me as well as nose swabs and mouth swabs. I wouldn't let them use the sticks unless they let me do it myself.

I have had blood tests taken every day and I have slept a lot. Mostly I am sad. I don't want to drink or eat so I have been on a drip with fluids. I have got sores in my mouth from the drugs and I had thrush in my mouth because of the neutropnia. The doctors have told us that I have a type of flu as well as a cold but I suppose when you can't fight the infection like other people you get to stay in hospital.

My blood tests haven't been very good and my temperature has taken a long time to stay down so I've had platelets and a blood transfusions!

I have had visits from my Nana and Grandad everyday and a Lady came to see me with her guitar and we sang some songs together. The candlelighters have been to visit me and they bring me toys and drawing and painting. I've even painted pasta to make a necklace. I've made my Daddy a birthday card and a Fathers Day card. I also made my Grandad a card. One of the Candlelighters is a dinner lady and she brings me sweets and crisps everyday and has made me  special milkshakes and soup to try and make me feel better. If I wasn't feeling ill I'd like her a lot!!

My Auntie has been to visit too and she bought lots of fun things to do whilst I'm in hospital. She came early on Sunday as My Mummy called her because my heart rate had been low overnight and I found it hard to wake up in the morning. I had a CT scan - it is like a big doughnut that you have to lie very still inside whilst it spins around you, I didn't like it Mummy stayed and held my hand and snuggles came with me. I also had an ECG both were fine. they have changed my antibiotics and taken me off some of my medicines to see if it helps. I think it is but I am still very tired.

Mostly Mummy has been trying to get me to eat and drink and mostly I have been saying NO!

I am getting a little bit excited as Daddy is going to visit on Monday and I am going to get to give him a big hug and a kiss! I am trying really hard to get better and go home. The doctors want to get me home as soon as they can but I'm still not very well!

Mum says: This week has been very stressful and quite scary at times, it is starting to feel more real and like we have a really sick child, but I feel as if I just stop and think about everything which is happening right now I might just be completely overwhelmed by it all. We have gone from a very sick child with a temperature. to a slightly less sick child with random temperature spikes to a sick child with no temperature but just not Our little Alice. I have been so grateful to Mum and Dad for their visits and clean underwear. I was glad to be able to call on My Sister when I was on my  own and not sure quite why Alice was going for a CT scan. Sunday morning we were kind of invaded by doctors at about 8am and it all seemed much worse and more frightening at the time than it turned out to be. I think their biggest worry was that she may have a virus affecting the fluid around her brain, they have every base covered with antibiotics and they have stopped medicines which may cause problems. I have been continuously reassured by all the staff and Doctors that this is all within the 'norm' for delayed intensification and that things will improve and they are sure she has a virus, we know she came in on Monday with a cold and now we are waiting for her to improve enough to go back to Mum's.  I think we will have to feed her through the NG Tube as she can't eat because of sores in her mouth and a week has passed with out her picking up like normal. It had looked good for us leaving on Monday now we just hope that when Gareth arrives she will be starting to feel much better.

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.

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