Brotherly love

The family was waiting for my son to come home from his second day at school, as soon as he entered the house he took off his shoes and ask where his sister was  (she was on the sofa sleeping). He then ran to her, climbed on the sofa, gentley stroked her head and gave her warm kisses, she woke up and then she started to scream for her mummy. Still he persisted and gave her a warm gentle cuddle, with a few minutes they were playing with a train set togther.

'I am already better'

I was watching TV with my kids, gave my daughter a kiss a said to her 'You're gonna get better', she replied 'I am already better'.

It has lifted, slightly.

And so the Sword has moved away, slightly, the CT scan was clear. Our Little Girl and Boy sleep at home.

No words or emotions ....

Over the past few days the family has noticed that Mlg has been losing her balance (and that’s where it all started) a call was made to GOSH and we were ordered to go to our local hospital. My daughter was assessed and she had a CT scan. I am not going to explain or describe the emotions my wife and I have been feeling, only say that once again the Sword of Damocles hangs heavily over our head as we await the results. Our little boy returned from his first full day at school not to be greeted by his parents but by others and now sleeps not in his home but another while we await the results.

How much can you fit in a day ?

1.       Get up (5.30 am), usual stuff then play with the kids.

2.       Go to work part way during the day get a call ‘My daughter needs blood’…. Okay that means transfusion in the evening ..whose going look after my son ? carry on with work as if nothing is bothering me, but I am worried, I know the risks.

3.       Lunch, 5 mins, I got to make phone calls to make child care arrangements.

4.       Carry on working.

5.       Leave work, arrive home, play with the kids.

6.       Eat supper with the kids (roast chicken [season by my daughter, the herbs were collected from the garden] and rice). I listened to my sons day at school.

7.         Lay the grass with my son and play with the kids.

8.       Arrange my sons social life for the weekend.

9.       Get a call from the hospital that the blood is ready.

10.   Take my daughter to the hospital for a transfusion (carry on working), see the blood slowing dripping into my daughter and here from another room a little girl gasping and rasping for life for hours on end (I have no idea what was wrong and dread to think).

11.   Go home, go to bed (12pm).

Emotions, I didn’t have time for them

    

       12. Back up at 76.45 a m playing with the kids.

Full of energy

My kids kids are full of energy have had a full days entertainment, including two huge ice creams. It was fun playing with both of them yesterday evening, oh happy but tiring evenings.

‘How’s your daughter, how is she doing?‘

People are well meaning but I wish people wouldn't ask the question 'how is your daughter? how are you doing?', as I believe does my wife. Let’s see how do I respond? I could say 'she's fine and so am I' but that's not the truth but I don't think you really want to hear the truth either.

1. She is seriously ill.

2. She has cancer, she is going through treatment which has so many nasty and damaging side effects that we'd be here all day if i started listing them.

3.She's covered in bruises as her body loses its ability to heal itself.

4. She's vulnerable to infection, so please don't keep touching her.

5. Despite everything she is happy, eating and playing.

How would you respond? What would you say to the question ‘How is your daughter doing? ’

How am I doing? Well, smiling reassuringly while they pour poisons into her, stick needles into her, pull dressings off her delicate skin all takes its toll. I am drained, tired, fed up, annoyed, frustrated, happy, relieved, having to love but really hating every minute. Especially when we can't promise her that 'it's going to be all right, this will make you better'. So please don't ask us how we are doing. We are doing - that's all I can say.  

We are making sure that the quality of my daughter’s life is as high as possible, she is as happy as possible in order to make she is in the best psychological state she can be to fight this wretched cancer. That, if she, we lose the battle we have had the best time ever, the best memories ever, that my son gets through this without too much pain.

If people care, truly care, they will let me be. Not threaten, not intimidate, nor ask any more than is required, I am doing the best I can within these circumstances: for all around. 

Coming back to the question. How is my daughter? Well right now at 5.47 am, she is sitting on the sofa waiting for breakfast, playing with a soft toy and she just said ‘I need a poo. ’ As for my son, well he is looking at the moon, excited, full of life. As for my wife, she is tired. My daughter now is on the loo.

Oohh, she ‘s just finished her poo and is looking at the moon, got to go. Life as normal.