England: magic milk and rainy days- Maintenance - Week 51

6th to 12th January

I was very excited to be going to England it is always fun to see my family, shame that we have to go to the hospital too.              

Monday morning Mummy and I were all packed and ready we went to the airport with all our family to say bye bye, I was sad to say bye to Toni but I'm only going to be in England for a week eating nice food and I had new headphones especially to watch films on the aeroplane.

On Tuesday my little cousin came to see me, I was very excited to see her and play. We especially like playing hide-n-seek together and generally getting into trouble. She couldn't stay for dinner though because she had to go to nursery on Wednesday, I was sorry to say good bye as I wont be back again for a long time, hopefully. Y

Wednesday as always was hospital day and it always takes a long time. I had to have a sleep and my goblins (IVIG). I did see lots of people I know and like and my friends the nurses looked after me, I miss them a bit when I'm in Gibraltar, they remember me when I was very sick and had no hair so they are all pleased to see me now, so much better. I like talking to the lady giving me my magic milk, it makes me giggle and tingle, I like it! Mummy says this time I was talking so much and giggling that she thought I wouldn't go to sleep. My Uncle came and took me to the hospital like he used to when I stayed in England and took me back to Nana and Grandad's house. This time my big cousin came to see me at the hospital and it made it more fun. 

After the hospital on Thursday Mummy took me to the supermarket and we bought the same gravy like Grandad has and some other food that I wont eat at home because it's not like Grandads. In the evening my Auntie and cousins came to visit and we all ate dinner together. Again I felt very sad to say good bye.

For a change we actually managed to get a flight home on Friday, which meant we passed Toni at the airport. Whilst I was waiting for my suitcase I saw Toni going to catch the plane. I waved at her and blew lots of kisses. We got to have noodles for dinner. Joe was away for the weekend so it was just Mummy, Daddy and me for a couple of days. Grown ups are a bit boring and I was really pleased when Joe got home from his skiing trip on Sunday!

Mum Says: It is always nice to get home and see my family, we are seeing them regularly because of our trips to Leeds, one silver lining. Alice did well at the hospital and it was great to see people and talk to other people who we know from our last year at the hospital. It was sad to see some of the new patients, you can tell who they are the parents genrally look like deer caught in head lights, because we know what to expect and they really don't. Even insomnia is easy to deal with compared to last year! Alice is getting to the age now that we have tears when she says goodbye to pepole because she really understands what it means. I was pleased that she was so happy to get to UK as there are days when she doesn't want to go back and we have a couple of unsettled nights when she gets back, worring about going back and having to stay longer than expected. I'm sure this will improve as out trips become less stressful and more predictable over the next year!

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!

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.

I'm a puzzle

I carried on having blood tests everyweek on a Monday. Some got better but mostly they got worse. 

The week before Christmas I think about 17th December I was very ill again and had to have another blood transfusion and some immunoglobulin. 

I had been tested for a virus called the Parvovirus and it was positive,but I just wasn't managing to fight it off myself. At Christmas we had to stay away from lots of people and shops because I was suffering from Neutropenia and it meant that I couldn't fight infections.


The Doctors were puzzled by what was happening to me. I carried on having blood tests every Monday with my friend Audrey at the hospital.

Looking for a carrot for Rudolf

I had fun at Christmas with my family and I got a new scooter!

  

Kim Says:  We had decided to make Christmas really quiet and special this year. Although we couldn't have lots of people over we managed to go out a little bit everyday when it was quiet with Alice and her scooter or her bike. The other children did all they could to help us make Christmas great and after all the worry it was a relief to have something to celebrate! It did look like there was an improvement on New Years Eve which gave us one night of relaxation at least. We knew that the way things were we could be facing a challanging 2013!