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.

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.