Christmas 2013 - Maintenance - Week 49

23rd to 29th December

I LOVE CHRISTMAS! On Christmas Eve it is my sisters birthday so she got to have presents at lunch time when Daddy came home from work, early! And then in the evening I got to wear my favourite Christmas Party Dress and my Auntie and Uncle, Nana and Alfred and cousin who doesn't have chicken pox came to my house for dinner. It was very exciting, especially giving each other presents. I like that. Then you have to go to bed and straight to sleep so that Santa can come to your house.

When I woke up on Christmas day it was quite late nearly 9.30am and I had forgotten all about Santa, but Mummy and Daddy soon reminded to me and when we went to the lounge there we so many presents. I was so very excited. I got lots of new toys and things that I'd asked for. And my brother and Sister did too!

Nana and Alfred came to have lunch with us but I was too busy to sit down and eat I had toys to play with!

On Boxing day when I woke up I came to see if Santa had visited again but he hadn't I told Mummy that she has to tell me when he is next due at my house.

Boxing Day was very exciting and busy because we went to the Polar Bear swim at  the beach to see a lady called Jayne who was raising money for me and my family. It was very busy at the beach and Jayne was dressed like a snowman which is very funny. But I got to play in the water a little bit because it was so warm and sunny, next year we might all have to do it for charity! I had toast and hot chocolate too at the beach. I like Jayne a lot she is my new friend.

Our oven broke on Boxing Day so we had to go out to a shop and eat our lunch which was really fun and different from our normal Boxing Day at home eating leftover turkey and ham pie!

On Friday I had to go to the hospital for my medicine and start on my grumpy steroids. I don't like feeling sick and grumpy but Mummy and Daddy say it will make me better and Toni is home to give me hugs. My blood was better which means that I am starting all my medicines again. I'm not sure I'm happy about that either. Although the Doctors have given me a week off. As I'm going to England on the 6th January they are going to do all my blood tests and Goblins (IVIG) when I am in Leeds having my injection in my back (lumber puncture) which is good.

Mum Says: We have had a wonderful Christmas together, it is such a shame that we were still missing part of the family due to chicken pox but after last Christmas in almost total isolation it was great to have people in our home to share Christmas with us this year! Alice seems to be struggling this month with her steroid one of the most exciting side effects is insomnia which has hit with a vengeance this month and we are up at 3am watching films and generally not sleeping at night. Going to the polar bear swim on Boxing Day was probably the highlight of Christmas for us as we saw so many people and having been in isolation pretty much for most of December it was so much fun and it really made us feel cared about having Jayne getting so much support and sponsorship for her swim! Unfortunately for our lot it means that next year I expect them all to do the same for charity!

SISTERS! - Maintenance - Week 48

16th to  22nd December

We've had to keep my week quiet, I've not been able to go to school or anything fun, Mummy and Daddy want me well for Christmas so Joe took my Christmas cards to all my friends at school and I stayed home.

On Wednesday I had to go to hospital for my goblins (IVIG) because I have the Parvovirus again, that is why my blood has been so poorly. The only good thing has been not taking my brown medicine everyday.

Again it took a LONG time at hospital and it didn't help that my blood didn't want to come out for all the tests they wanted to take. The Doctor had to put the end of the bed up high so all my blood rushed to my head and then he wanted me to pretend like I was doing a big poo on the toilet. He looked very funny. But it did make my blood come out nice and easily.

After the hospital we ran home to get changed into my Tinkerbell Dress and silver shoes for my cousins 4th birthday party, last year I missed it because I was in hospital having blood, this year we were late. Next year maybe I'll be there for the whole party. I didn't really feel very well at the party and I just wanted to go home to bed. But it was nice to see my cousin and give her the birthday present we had bought her.

My best day though this week was Friday as my big sister came home from University! We had to wait all day for her aeroplane, in the end I decided the only way to make it come quick enough was to go to bed and sleep. It worked when I woke up it was time to go and collect her! And to make it even better I got to have Chinese noodles and sweet and sour sauce from the shop for tea!

At the moment Toni is my very best favourite person, unless her boyfriend is here then I like him better!

On Sunday my Auntie called to say my Cousin has chicken pox and that we wont be able to see her over Christmas. That made us all sad because we wanted to have the whole family together and now AGAIN someone would be missing.

 Mum Says: We are so relieved to find out that Alice has the Parvovirus again, as they other option was a relapse and that would have been devastating. We know what to expect from the Parvovirus and are able to relax a bit before Christmas. We are finally feeling ready for Christmas, no matter how ready we were with the food shopping and presents someone was missing and now Toni is home it all feels better. This is the first time we have all been together in one house since May, unfortunately My Niece has Chicken Pox and cannot be with Alice (Chicken Pox being life threatening to Alice at the moment) So we will still not manage a Christmas with the whole family!

Christmas Plays and Parties - Maintenance - Week 47

9th to 15th December

By Tuesday the Doctors said I was well enough to go home, my blood counts were still not good enough to be in school or to do anything fun but at least I got to go home. I'd ended up quite enjoying my stay in Hospital. I'd managed to glitter most of my room and do sticking and painting and a lady who is new at the hospital came to play with me and she might bring puppets too one day when I'm staying at Rainbow Ward.

On Wednesday I got up in the morning and got dressed in my costume for the class nativity play, Mummy and Daddy took me as I'd been practising lots before I was ill and I'd been singing all the songs in hospital. It was lots of fun being on stage and singing and I got to do a dance because I was a Christmas present. Nana and Alfred came to see me too and they thought I was really good at my singing and dancing. I didn't stay at school though, after my play Mummy and Daddy took me home. I miss my friends and my teachers.

Thursday was the Rainbow Ward Christmas Party and I got dressed up in my best Christmas dress and went to see my friends at the hospital. It was lots of fun we played a big game of pass the parcel and I got some sweeties. We saw Father Christmas and he gave me a present and then a magician came and did trick for us. We had to say the magic words for him, when I tried them at home they didn't colour my colouring book like they had for him. Mummy and I saw lots of people we have made friends with when they have stayed at the hospital with me and I got to see the triplets who were in hospital at the same time as me but we weren't allowed to be together because I was so neutropenic.

My best bit of the party was that one of my nurse friends had taken her dog to the party and it was a tiny dog that I could pick up and cuddle.

Mum Says: It is difficult in the run up to Christmas keeping Alice away from parties, she missed 2 so we decided to let her go to the hospital party, it at least gives her good memories of Rainbow Ward and not just being sick. Although the Nurses always make our stays a positive experience and although Alice dosen't like the idea of being at the hospital she never complains when she it there. Taking her to the school play was probably more for us than her but it was worth it as it will always be a lovely memory for us and Alice was in her element on stage (oh dear). We are not feeling at all Christmas-ie at the moment we have even tried putting up decorations, although Joe wanted to wait for Toni to get home before we put up our Tree.

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.

Ballet Exam - MAINTENANCE - Week 44

26th November

Today has been a good day! I didn't go to school today because I had a ballet exam. I wasn't sure what an exam was but Mummy, Nana and Alfred were going to watch me dance and that is exciting.

At first I wasn't keen on doing an exam because I had to wear my tights and I thought they were going to be uncomfortable and itchy. I didn't want to wear my cardigan or my hair band and thought I might just stay at home. Mummy left me to be grumpy for a little while, not too long though. She gave me a big hug and got me ready to go. When I was all ready and had my tracksuit on I was very excited waiting for Alfred to pick me up in his car.

When I got to my dancing everyone was wearing their tights and ballet shoe, it was warm enough that I didn't need to wear my cardigan. My cousin had given a hair band to Nana for me to wear and that was really special and it didn't itch like my old one. My teacher gave me a sticker with my name on for the lady watching us called an examiner. It wasn't scary at all Mummy, Nana and Alfred were able to watch me and our teacher Ann-Marie danced with us just like a normal lesson. We danced a story about a little girl going to the beach which I always enjoy.

At the end the examiner lady gave us each a certificate. Which I love so very much!

After dancing I went to Nana's house for lunch, but I didn't stay very long because I was tired. Tomorrow I have to go to hospital for my monthly injection and to get my minty medicine (steroid)

Mum says: It was so amazing to see Alice join in with the other girls at ballet today. We have had a more normal few weeks since her blood transfusion and she has managed mornings at nursery for the last 3 weeks. Alice has also started back at dance, we really weren't expecting her to be able to join in with the exams, but thanks to her teacher Ann-Marie there she was. It was very emotional for me to see her especially considering 6 months ago she was struggling to stand from sitting on the floor. Alice has  pushed herself physically and has never given into the pain and today all her effort has paid off. We could see where she is a little slower standing and we know she can't skip like she used to but she didn't stand out from the other children too badly. Today has been a good day!

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!

7th - 20th October - MAINTENANCE - Weeks 38 & 39

 7th - 20th October

I spent a week going in and out of hospital in the day I was at home and at night I had to stay at the hospital to sleep and have my medicine. but when they took more blood cultures nothing seemed to grow again.

Being at home can be a bit boring so Mummy made me play-Dough, but it didn't stop me from doing silly things like getting in the bath and covering myself in Sun cream. Mummy did laugh ... eventually.

On Friday I didn't have to sleep at the hospital I went for my medicine at 8pm and then went home!

Having managed a weekend at home Mummy and I had to pack up and go to England to see the Doctors at Leeds.

I was very a lot excited about going to England on the aeroplane and then the train and then in Grandad's car to Nana's house!

In England I got to see my little cousin and go to Ducklings and I stayed at my Aunties house for a night because we were going to hospital very early. It was especially fun because I got to stay up late with my big cousin and watch cooking on telly!

When I went to the Hospital they were all surprised to see how much i had grown and how long my hair is  getting. my friend the receptionist had been given little cuddly puppies by a charity and she had saved one especially for me. I felt very special.

In England I have my blood taken as a finger prick which is much quicker and easier than from my wigglies but I still had to have them in so they could give me magic milk to sleep and to do something to the line because of the maybe infection I might maybe have had in the line. And they weren't happy with the blood test results so they took it AGAIN!

After the hospital Mummy and I met up with my other cousin who is at Leeds university. We had a drink and Mummy chatted to her.  It was raining a lot a lot and Mummy and my cousin got very wet. I wasn't feeling very well after my injection and my sleep and was grumpy and not very nice to my cousin. I felt sad afterwards when I felt better.

We were hoping to fly home on Friday after seeing the Doctor on Wednesday but when Mummy called for flights there weren't any so I got to stay in England until Sunday! It meant that Nana and Grandad cooked all my favourite foods but I had a sore mouth so I didn't eat as many as I wanted to.

On Saturday At Nana' s house I caught a ladybird, I kept her in a Jar beside my bed and then in the morning I let her go in the garden before I went home, I wouldn't have had my ladybird friend Abigail if I'd gone home on Friday!

It was very exciting coming home ans I made friends with lots of people on the aeroplane and Daddy and Joe were waiting for me at the airport! 

Mum Says: We felt as if we'd just escaped one hospital when we were off to another. It was great to be in England and to see all my family. It was a lot less stressful being there knowing we were coming straight home and not having the uncertainty we had before. I say that but after all the problems (possible infection) with her port and line we weren't sure if we were going to be staying on the have it removed and refitted. fortunately all was well as we'd hoped. Her bloods weren't really that great, we were hoping for better results but after all the illness she'd just go over it wasn't particularly surprising she was low and it didn't stop her having her lumber puncture. Poor Alice wasn't particularly well after the treatment but in comparison to a few moths ago ... well there is no comparison.

23rd September to 6th October - MAINTENANCE - Weeks 36 & 37

23rd September to 6th October

I have been feeling quite ill and have been in hospital for 7 days having IV antibiotics.

On Monday when the Dr came and listened to my chest he said he could hear a little rattle so I had to go for a chest x-ray.

The x-ray showed something not very good and the Doctors in Leeds want me treated for a type of pneumonia called PCP for short. I have to take antibiotics every Monday and Tuesday to try and stop me from getting it. It is caused by something everybody has in their bodies but when you have chemotherapy it makes it hard to fight and makes you sick.

I didn't have any oxygen but did get to stay in the room we call the goldfish bowl because the nurses can look in a big window and see me all the time!

I have been quite happy on Rainbow Ward and I have got out of bed and played everyday! I am having some pink horrible steroid and I think Mummy would rather that I didn't get grumpy then excited then hungry then grumpy quite so often but I can't help it.

I love all the nurses who look after me on Rainbow Ward and make my time so much fun! Everyone knows me and Mummy here and everyone wants to come and play in my room because it is the best place in the hospital to be!

My Nana comes to see me everyday so Mummy can go home or to the shops or what ever in the mornings and Daddy comes for lunch with Mummy and me and then he looks after me when he finishes work so that Mummy can go home and look after Joe and cook dinner for them.

I got to go home on Monday when I was well enough but couldn't go to school so Mummy and I made cakes and played and my cousins came to visit and play with me.

The good thing about being sick is that they didn't give me my monthly injection in my wigglies yet so I haven't been as tired as I normally am at the beginning of the month.

On Friday I was feeling much better and wanted to start going back to school but I had to go to the hospital instead to have blood taken from my  wigglie and also from my hand because when they took blood on Sunday the people in the lab grew something and they think I might have an infection in my line.

I have to have IV antibiotics again but because I am so well the Dr lets me go home during the day and I have my medicines at night when I sleep at the hospital. We are waiting to see if anything grows in the blood they have taken.

On Saturday instead of going home from the hospital Mummy, Daddy and I went to town and did the walk for life to raise money and awareness for cancer research.  It was fun and we saw Mummy's friend and they walked together talking all the way! Joe decided he'd rather play basketball then come with us. Next year we are going to make Daddy and hopefully I will be well enough to walk some of it.

Saturday night was also very exciting because Daddy had a sleepover at the hospital with me and Mummy went home instead.

Mum Says: It is very hard to be back in hospital again after such a decent stretch out in the real world. It reminds us all that Alice is still sick and not as well as we would like her to be. 

Being in hospital in Gibraltar is a lot different than being in the UK. I get to go home everyday and spend some time with Joe and to do the washing and generally keep an eye on how the boys are coping at home. We see Gareth everyday before he goes to work, at lunch time and after work! Although Alice has been quite ill she has been happy and alert and playful. Which is a different experience from the last few months when she hasn't really been happy or playful at home. 

The Nurses on Rainbow Ward make you feel like part of the family and keep Alice's spirits up. The little things count like putting a picture up with her name by the bed. It all adds to making the late night dash to the hospital a little less stressful.

Gareth and I tried to celebrate our 15th wedding anniversary on the 3rd and it started well but I got a call from the hospital asking me to bring Alice in for blood tests as her blood culture taken on Sunday had grown a bacteria and they were concerned that her line might be infected. So Alice had to start on IV antibiotics and have new cultures taken from the line and from another vein. So the stress and waiting began again!

This time the Dr saw how well Alice is in herself and she is able to come home during the day, having most of the antibiotics at night when she is in the hospital advantage of being 10 minutes away, thank goodness Gibraltar is so small!

We are now starting to try and break Alice of the Mummy habit that she has developed over the last year Gareth stayed with her at the hospital and I got the bed to myself and an unbroken night of sleep!

11th to 23rd September - MAINTENANCE - Weeks 34 & 35

11th to 23rd September

Being back at home is very very fun. I can play with my toys when ever I want and I have found toys that I had forgotten about.

I phoned my Nana and Alfred to come and play with me, everyone else is in school. They have taken me out in Alfred's car and to the park and Daddy comes home from work every day and we eat our dinner together and Joe is here and plays with me. I'm so excited all the time.

Friday I got to go to a birthday party as my Cousin turns 7 and I got to wear my Lala Loopsey dressing up! I loved it, the party, dressing up and playing with the children.

Saturday we went to a BBQ as Daddy's friend is leaving, I had so much fun with the children and played and ran around a lot! I especially liked the BBQ because they have 2 puppies, Millie and Jemma and I loved them. I think I might be a puppy. They like chicken, so do I, They like rolling around on the floor, so do I. They get very excited seeing lots of new people, so do I and they get worn out and need to sleep a lot, so do I.

Monday was a very special day for me as I started my nursery at school. I met my teacher and visited the class on Friday but on Monday I got to wear my new school uniform. I was so much fun and I really enjoyed playing with children and I got a sticker on my second day for being good. I told Mummy that at school we do lining up but we do other stuff too. I am especially lucky as my cousin goes to my school and when Mummy left me in the playground my cousin came a looked after me for a little while until she had to go to her class.

I had my first trip to Rainbow Ward on Wednesday so I missed school and had a blood test. I didn't mind especially as the Doctor told Mummy that my blood wasn't very good and that I could stop taking my yucky brown medicine and green Saturday medicine.

By the end of my week of firsts I also get my first temperature and went back to Rainbow Ward ... lucky I like it there!

Mum says: It was great to see Alice star nursery and enjoy it so much! We have been very busy and She had been coping very well. If not a bit more tired than usual. Gareth and I managed  a meal out before Alice's temperature went up too much by Saturday morning we had to go to the hospital to be checked. It didn't seem initially like it was much of anything and she wasn't neuropenic so we came home with antibiotics. But by Sunday We became aware that things just weren't improving so went back to the ward!  

National Day

Tuesday 10th September

National Day is a very important day in Gibraltar and it is like a great big party in the street. 

I wasn't going to go into town but we were all so excited that I was back home we decided to go into town all together.

I met so many people in town it was a bit scary. And a lot exciting. It was very noisy in town with too many people and I didn't like it too much but I got to have some food in a shop and Daddy went to the political rally.

One of the best bits of being in town was seeing the babies that I read all about on the Internet whilst I was in England. There were 3 of them. When they were tiny they had tubes in like me! But they don't anymore. Like me! 

Later after lunch and a bit of a rest at home we all went to my Aunties house, she had everyone there to celebrate National Day and it was really fun to play with my cousins. My Auntie and Uncle had a big giant paddling pool out and I got to go splashing around. My cousin also has a trampoline and a new kitten. 

My Auntie and Uncle have been busy decorating their house whilst I was away and it all looked very different but I liked it all a lot. especially their garden.

I got all my cousins toys out and played lots!

It was so exciting just being with everyone and to be home and to have so much fun. It was like Gibraltar had a big party just for me!

Mum Says: National Day is always a special day in Gibraltar and this year was no exception. If nothing else Gibraltar knows how to throw a party and seeing everyone on the streets in their red and white showing their sense of community and patriotism is something to behold.
Alice and I saw lots of people we haven't seen for a long time. Alice seemed a little unsure of herself and who exactly these people are, 8 months is a long time for a young child to be away from home and people. But everyone remembered her and spending the afternoon with the family was so much fun, seeing the children playing together, picking up as if Alice had never been away!
Being with Gareth and Joe like a normal family means the world to me. I'm now waiting for reality to kick in!

Got to Fly

Monday 9th September 

Today I got to fly home with Mummy and Daddy. When I woke up I was very excited as suddenly I remembered about going home and seeing my friends, hiccup the cat and Joe!

I know Nana and Grandad are going to be sad when I go and are going to miss me but I was just a bit to excited to be sad.

We got on the train to the airport, we had lots of bags and it seemed a bit like an adventure.

At the airport we had to queue for a long time to check in our bags and then again to go through to the air plane.

I had fun at the airport. We had lunch there and I got to play on the rides and I even tried to win a toy from the machine but I didn't.

The flight took a long time and when I got on they didn't take off quickly enough, I was in a hurry to get home. I fell asleep for a long time but when I woke up I was still on the plane and that didn't make me happy. Daddy let me walk up and down the isle and I said hello to everyone. I even went to see the air hostess behind the curtain, when we got off the plane she even remembered my name!

It was hot when we got off the plane much hotter than in England. We didn't have to wait too long for our bags and I was very happy to see my pushchair.

At the airport all my family was waiting for me to arrive. I was so excited to see them all and so pleased to be home!

It took me a long time to get to sleep that night all I could think about was my toys and playing and playing and playing! 

Mum Says: It all seems so unreal right now. Travelling with Gareth made travelling with Alice that bit less stressful. She behaved beautifully for the most part. Although I'm sure everyone on the plane knew she was unhappy about how long we had to wait before take off.I found I was very emotional saying good bye to Mum and Dad I don't think they will ever know how wonderful they have been and I honestly couldn't have managed without them, their love, support and acceptance has been invaluable.
Getting back to Gibraltar still feels like a holiday! Again I couldn't believe how emotional I felt when everyone was waiting at the airport and how much my nieces have grown and changed since I last saw them. What joy they bought to Alice when she saw them and her brother and again when she got home to the cat and her toys!
I don't think we will ever forget everything that has happened this year but I hope we can hold onto the good and happy memories, like today and let go of the bad. 

2nd to 8th September - MAINTENANCE - Week 33

2nd to 8th September



This week has been a lot happy but a bit sad too. On Tuesday I went to play at my little cousins house and had tea there which was lots of fun, although we did argue a little bit about toys and things, it was a bit sad because it is the last time I'm going to be able to go and play at her house for a while. Because I can go home!

When we went to the hospital on Wednesday the Doctor was very happy with my blood results and said that she is now happy for me to go back to Gibraltar! My sister also came to stay at Nana's house before going to University.

The minister from Nana's church came to visit us at Nana's house to find out what was happening and to ask if we could speak in Church about what has been happening and going home later we went out for a special lunch on Thursday with my big cousin who is also going to university and came with us. Toni went shopping and bought herself a new dress.

On Friday Mummy, Toni and I went to town to go shopping and when we were there we found Daddy! He had come to take Toni to University and to rescue me!

Mummy spent most of her time packing and trying to fit all our stuff in the cases. I was a bit sad on Saturday because Daddy and Toni had gone and I was still at Nana's house with Mummy.

Sunday was exciting we went to church on the bus and they had a party at Sunday school for me to say goodbye. I'm going to miss all my new friends! Best of all was getting home from church and finding Daddy at Nana's house!

Mum Says: Now that it is time to go I am getting more nervous about everything. Alice is getting excited and confused. She has asked if she is going back to Daddy's house. It has been great seeing Toni and I am very happy to see her going off to University, she has worked hard to get there. She isn't my little girl anymore and has shown us this year that she really is a fully grown woman able to cope with anything life throws at her! Let's hope she and her cousin have a fantastic time at University and that other people appreciate the 2 wonderful young women I love so much!
It Still feels unreal to be going back. Packing up I've realised how much we have accumulated over the last few months. It is very emotional saying good bye to people. We have built ourselves a life of sorts in UK and now we have to go back to reality! I may be apprehensive but I am also looking forward to being a family again and getting back some sort of normal. 
Now is the time I burst the bubble I've created around Alice and hope for the best! 

What a Day

4th September

ANOTHER exciting day, Phew.
 

Today I went to the hospital in Leeds to have my injection in my wiggglies and to get my grumpy minty medicine.

 

 

When I saw my Doctor she was still happy with me, my bloods were so good I'm not even a bit anaemic any more and she is still happy for me to go home. So happy that they didn't book me an appointment again at Leeds until 16th October!
 

Mummy spent a long time today talking to my nurse about going home, starting nursery and how I feel when I take my medicines, anything that might be a worry to her, I played with the kitchen and with my friends I even played dominos.
 

AND to make it even more exciting we went to and came back from hospital on the train AND my big sister came to stay at Nana's house.
 

Mummy and I waited for her to arrive in town. I played in the fountain outside the station but got a bit carried away and got wet. Very wet! Mummy had to take me to buy  some new clothes because I'd already used my spare clothes when I had a little accident earlier.

I don't think Mummy could be upset with me because she seemed to happy about going home and about having Toni come to visit.
 

It is a bit sad though because on Saturday Toni will be going to University and we wont see her until Christmas which is a long time away, but not too long I hope.

Mum Says: It is all really happening now. I feel like I've been holding my breath waiting for today and the Doctors final confirmation that Alice is really well enough to go home and start living a (more) normal life again. We flew over from Gibraltar on Monday 14th January 2013 and will finally be getting home on Monday 9th September. Let's see how we get on back to reality and away from our little bubble we've created here at Mum and Dad's house  .... oh AND we have to adjust to life without Toni as she goes to University on Saturday!!

Party Party Party!

1st September

Oh my Goodness me what an exciting day I have had and what a late night.

Today was the day of my party. It was a special thank you party not a birthday party. But it was MY party.

My cousins came for tea and my Aunties and Uncles and we had party hats and everything.

I made table decorations with Mummy and she cooked cakes and trifle (like in 'My Naughty Little Sister' book) and other nice food.

I especially liked chicken and jelly to eat!

I saw my Big cousin who will be starting University soon and I gave her a special present that I made for her and a card. My Aunty gave me a Peppa Pig sticker book. Nana's friend also came to the party because she is my friend too and she gave me a bracelet with a fairy just like hers.

Grandad had put a tent up in the garden and me and my cousins went out and played there for a little while. 
I got to wear a party dress and my little cousin and I had wands that glowed in the dark! We played and played.

I am usually extra grumpy and tired on Sundays and I often sleep lots but this week I was too excited, I had to wait for my little cousin to wake up to play with ME for a change!

I got to cuddle my Aunty and I even sat with my Uncle whilst he watched football.

If I have another party I think it would be nice to invite Joe, Toni and Daddy too.

Next week is my last week in England and it makes me a bit sad to be going but also very happy. I love my family lots and lots but want to go home and see my other cousins and get back to my bed and toys and Daddy!

19th to 31st August - MAINTENANCE -Weeks 31 & 32

19th to 31st August

We have had a bit of a strange week because Nana and Grandad went on a little holiday to see my big Cousin play Cricket. It was a bit funny being in their house without them. I liked having Mummy to myself and we went to see my Uncle and Aunty and little cousin and have tea at their house. Mummy made sure we had jobs to do outside the house everyday.

 

When I went to the hospital it was very strange because it was very quiet, there were hardly any children and my Uncle stayed with us and watched rugby and did work mostly. It was a very good visit though because the Doctor was so happy with me and my blood test results that she said that I can go home soon. One more hospital visit, one more injection in my wiggly and we are ready to go ...

We were very excited that we could go home and Mummy got busy arranging our flights but I'm not sure if we are both waiting for something to happen and it all to change again.

I have been practicing being a good girl and when Nana and Grandad came home Mummy and I decided to arrange a family party to say thank you to the whole family for everything they have done for us whilst we were here.

I was such a good girl that I even stayed with Nana and Grandad so that Mummy could go and have her eyes tested. I went to the big park with them and took my new bike. Mummy came to meet us at the park. I was very happy to see her and glad that she came to see me at the park like she said!

Mummy has been sorting out our stuff and I think we will need to buy another bag to take it all home! There is so much. Luckily Daddy will be coming to collect me and Mummy. He will finally come and rescue me!

Mum Says: It has been a long time coming but finally we have been given the go ahead to get back to our lives in Gibraltar. It is going to be hard for us both to adjust to normal life. We have been well looked after by the family and supported every step of the way.  Alice is better but the truth is that she is still tired a lot of the time, although she never complains and is struggling to adjust to life after the intensive treatment. I am hoping that being home will help her get into new routines revolving around Nursery and friends not me and food! I've noticed the change in our easy going, happy little girl but I'm sure that things will improve with time.

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!