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.

25th February to 2nd March - CONSOLIDATION - Week 6

25th February to 2nd March

This week has been really good. My big sister Toni came to visit. I stayed up late and went to collect her from the train station. I was very happy and excited to see her!

Since coming out of hospital I have been feeling much better and happier. I have been doing lots of walking, playing and climbing stairs so that I've got lots of stickers on my chart this week!

On Tuesday Mummy and Nana took Toni shopping in town and I stayed with Grandad. I made a butterfly picture and spilt glitter all over the table and floor. Grandad tried to clean it up quickly but Nana and Mummy got home before he could finish and caught us with glitter everywhere!

I had to go to hospital on Wednesday which I didn't like because I was going to have magic milk (anaesthetic) and my immunoglobulins . I was very hungry and grumpy. My big sister came with me and Mummy. There was a nice lady at the hospital who did face painting for all the children waiting to see the doctors. It got very late before I got to go for my sleep because a lady called a dietician came to see my Mummy and I had to see the Doctor and have lots of blood tests taken

 

When I did go to sleep they gave me some medicine with a lumbar puncture as well as taking some bone marrow and something called a trephine. The Doctors want to find out what has been making  blood so poorly, the Parvovirus or the leukaemia. Except this week my blood was very well! I wasn't neutropenic or anaemic!!!! I did have to start a new type of chemotherapy which I take every night in my mouth, like normal medicine.

Everyone got a bit worried as I had a high temperature after my immunoglobulin (IVIG) and we thought that I might have to stay in hospital again.  When the Doctor came to see me I was fine and it was just a reaction to the IVIG and quite normal, although they took more blood to test just in case!

On Thursday we decided to celebrate that I could go out and mix by going into the village and eat our lunch at a cafe which was  very exciting for me! In the afternoon my little cousin came to play. We had lots of fun and lots of giggles and made a BIG mess in Nana's house!

I was very tired after such a busy day but I have been busy growing since coming to England and Mummy had to take me to town on Friday morning to buy new shoes. My old brown ones were too small and I need shoes at help me to walk properly. Toni came to help me choose new shoes. I wanted red ones like Peppa Pig. The lady in the shop was very nice and helpful but they didn't have red shoes so I chose nice purple boots with flowers. I think they are better than red shoes. Because I was tired I spent the rest of my day at home cuddly watching films with my Mummy

Mum Says: This week it has been much easier to be positive about Alice's treatment as she has been so well in herself and so much more like our little Alice. I have enjoyed having Toni here and getting to sit and chat about her life over coffee in town like normal has been wonderful. I still feel a bit giddy when I think about her blood test results, the best she has had in the last 3 months! I am now hoping to be allowed back to Gibraltar for a short time at least. I am mostly just enjoying seeing her so well this week and I am getting as much squeezed into our week as possible whilst we can go out and about!