The next few days

Well what was going to be an overnight stay at Southampton hospital was turning into much longer.  To be honest as much as I didn't like being in hospital I was pleased that Billy was there getting the treatment that he needed by people that could help him.  Although I had given Billy the normal medicines like calpol and antibiotics I wasn't sure I was ready to do this big list of medicines that he was now having.  Being in hospital gave both of us chance to get used to the new routine.

It was a scary thought being responsible for all the medicines, antibiotics, steroids, laxatives and others.  What if I got them wrong? What if I forgot a dose of them?  Everything went through my head.  Although I knew that I was a organised person that didn't forget things and had routines it was still in my head.  I know being a mum is a huge responsibility on its own but to then become a mum to a child with Leukaemia and be responsible for everything was scaring me.

So for those days I was more than happy to watch and to learn our new routines.  As the nurses are all so experienced they all knew different ways to encourage children to take meds and ways to help me ensure he would take them properly.

The weekend came round, we had just moved into a really hot spell and being at the top of the hospital was very very warm.  It was torture to look out the window and see that beautiful sunshine and not be able to go and enjoy it.  When we were at home we loved being out in the park making the most of the sun and playing.  There were fans and the windows opened a little bit so there was a bit of a breeze but it was still uncomfortable.

Thankfully one friend brought me in some flip flops, another a dress and tshirts and my mum brought me in a  few more bits.  Thank god for them, I literally packed a few bits for us.  Billy was getting brought lots of new PJ's and tshirts so he was fine but I was living in jeans, trainers and a jumper as it was colder when we were admitted.

We had lots of visitors at the weekend which cheered both of us up.  The fact people had to travel for at least an hour made it even more special.  One of the ladies from Billy's nursery came to see him and was fantastic, Billy decided to have an accident just as she turned up and I was so embarrassed but Carol just brushed it off and helped me clean him up,  Friends like that are worth everything in life.  Just knowing people cared mattered.  I had a few friends who visited more than once and that was incredible to us.

Billy had got more confident with staying with the play leaders and a couple of times I went to the canteen with friends and managed to eat proper food!  Just that half hour out of the ward let me recharge a bit and made me feel human even if it was only short.  There was a shop that sold clothes and I even ventured in there.

I hated leaving Billy but he wasn't allowed off the ward due to him being poorly and on a drip.  The first few days of the dexamethasone weren't affecting him too badly and he seemed to be coping with it, no mood swings and no major appetite change.  The first chemo made him a bit poorly and he felt a bit sick but nothing as bad I was expecting.

I still cried but mainly now at night or when someone I hadn't seen came in, the shock of telling someone knew never got any better.  It felt weird to say my son has Leukaemia.  I read a lot of the literature I was given so I could explain a bit more to people who asked me questions.  I was more confident in asking the nurses and other staff questions without worrying as to what the answer would be.

It was in this time that the granddaughter of a lady i knew through work was also diagnosed with Leukaemia.  She was diagnosed with a different type to Billy but we both bonded and we are in touch to this day, her daughter had to have 5 months treatment and that was it but although Billy will have at least 3 and a half years she is the person who understands me most.

It was so nice to talk to someone who understood and understood 100% its a horrible way to make a friendship but I know Jo will always be a part of our lives.  I remember the days when neither of us slept but were like walking zombies.

Billy still had his bandage on over his port site but he wasn't complaining of pain.  Although he wasn't the child he was a week ago for lots of different reasons he was my Billy and he was determined to fight it.  He would tell everyone that he would beat the 'bad aliens' that were inside him.  That was my Billy and how proud was I...