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.