There will be typos in this...but I must get these thoughts down.

I was told by someone to be happy today, ok, why? I tell people that I must be positive, I try or appear to be positive but why? How happy should I be? Life is not good, it is struggle to keep going. It is struggle to keep going for my daughter, son and wife. Yet I am being asked to be happy and positive for others. I seem to be consoling others for the situation, explain and saying sorry.

A few minutes ago my daughter started coughing, it sounded like choking, I never know that when I leave my daughter  that might be the last time I see her alive. I saw a dead cat  this morning, it looked so peaceful...it shook me up. There is so much that can go wrong, they are treating to cure, but we have been warned that the cure might kill her. So how happy should I be?| Yet, I'll be positive, I'll do what I have to do, be happy.....nah carpe diem, seize the day.

Sleep, who knows. Rest maybe, my mind can never rest. Humor, I am not going to laugh, what have I to laugh about. I will do the everything to the best of my ability.It helps hugely when I have the support of all of the kind, considerate and tolerant people I know. Thank you to those who provide that support.

As I read these words back, I feel better and see how I feel, this blog is called 'My little girl has cancer' it is designed for me to remember, to reflect and for people to have a window into my world.

Home again

Last night the ladies returned from hospital, brother and sister cuddled, blew bubbles, heard stories, smiled and laughed. Our hearts are light our eyes are heavy, exhaustion!!!!!!!  

Today the cycle begins again, the nurses come round to build up the dropping nuetrophil levels, the very smelly toxic nappies (gloves to be warn), the checking, watching and waiting. We have settled into a routine, yet know that the routine can be broken at any second by a trip to hosiptal, that is routine.

There was a bed

Was there a bed? YES finally (I received a text around midday), except not in the oncology (cancer) ward, four other young souls were also waiting for their chemo. Four other sets of parents were waiting fretfully, restlessly for GOSH to call to THEM, waiting for the call to tell them that there was a bed empty for their child. Our daughter went in with my wife and I was left to get on with the rest of the day, to stay focused. Food was almost forgotten, coffee was not.  

Very late in the afternoon I saw my son, he was in a fabulous mood, my in laws had made sure of that!!! When they left it was my job (I am starting to understand what it is like to a single working parent) to get him to bed, wash up, check his social calendar for tomorrow, update friends, chat to my wife (Skype did not work properly this time, I only caught a fleeting glimpse of my daughter) for no other reason but to hear her voice and that of my daughters, put away the clothes, prepare for tomorrow, chat again to my wife to find out how the chemo is going. Finally I have stopped, not rest, just stop. I have perhaps 5-6 hours from now until it starts all over again. And once again the family is apart.

Will there be a bed?

And so the day began, early, very early. The anxiety of not knowing if and when there will be a bed available at GOSH disturbed our sleep, the children have felt this, their sleep was disturbed wanting and needing tender loving care from their mother. Tiredness overwhelmed them. And as I write this, my wife and children are sound asleep in the same bed. Yet the question hangs heavy over our heads, will there be a bed? Will children be separated from their parents?

Serenity

Today started very much as it finished serenely. For breakfast we had playing, followed by cereal finished with cuddles and then we all get got dressed. My son had a big day ahead of him he was going to see a show with friends (getting there by buses and trains, parents were not allowed!!) and my daughter had a play date. While they were waiting for day to truly start, the kids played beautifully in a bedroom, fortunately my little girl did not hear the doorbell ring, nor did she hear the door open and then close. My daughter decided to go for a walk, on entering the short, narrow corridor she smelled and heard the voice of someone familiar.

 ‘Not me, NOT ME!’ she cried and screamed ‘Don’t wan it!!’

 I carried her into our living room and on the sofa sat the nurse ready and waiting take blood from the Hickman line, all the time she was crying ‘I’m better now, not me!’

 It took minutes for the blood to be taken, the procedure is painless so we have been told on numerous occasions and she calmed down once she realised they wouldn’t be giving her an injection, then the nurse left. The rest of the day flew by filled with fun and food, yet it was broken by a call from the nurse to tell us the blood results and a call to GOSH to check if there was bed free tomorrow for her next round of chemo – there isn’t one at the moment. Impossible to plan and more holding our breath. My girl played with a couple of her best friends, met and fell in love with a cousin that she hadn’t played with before and is sleeping soundly now.

A day to remember

Yesterday, the sun’s rays kissed our house and slowly warmed our house. We woke 7 am, the latest we had woken up in years. We had a lazy breakfast and stayed in our PJ’s until 11 am.  Throughout the day we played games, laughed, watched TV and made supper (stew) together. My son decided to have a bath in the middle of the day for no other reason than he could. Later on we mowed the lawn together. My daughter toddled out of our house, up to our tomato plants and then picked some bright red cherry tomatoes. She then cleaned the cage of the stick insects (they’re still alive) followed by tickles, cuddles, slumping, bumping and jumping. For the first time in months the kids were in bed by 7.30 pm. I mean lights out and fast asleep.

It may seem a boring day, but we did not speak to a doctor or nurse.  For us it was a day to remember.

Peace

A sense of peace, calm and serenity fell over our house for the first time in days last night. I knew my daughter was sleeping soundly in her own bed just metres away, I knew my son was cuddled up in bed snoring quietly. And I in lay in bed cuddling my wife. The world was a wonderful place.