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. 

Living in the shadow of death

I, we all live in the shadow of death and disability. It follows us where ever we go, I do not live any closer to death anyone else, but this experience has reminded me that I, we all could be living with a time bomb inside of us. The difference living with a child with cancer is that death is ever present. The phone goes, my heart beats. Something as mundane as my daughter stumbling, falling and then grazing her knee, the skin would then be broken, if her white blood count is down she is vulnerable to infection...If her temperature rises or falls, she starts to bleed, cough or stumble, the phone rings or does not, if, if, if.

My daughter is my own flesh and blood, no one can truly understand what I am about to write unless they, you have been in this situation. I have lost a father to MSA, a grandmother to cancer, very close friends to illness, murder, accidents. I have been ask to replace a friend in skirmish in which a young man of twenty was killed BUT this experience is like no other. My two and a half year old little girl is my own flesh and blood, she carries with her my dreams, my hopes, my expectation, my future. She was created, made out of love and passion,  out of the love I have for my wife. No kind, soft words from doctors, nurses, social workers, our friends, or her school friends count in the times of darkness, unless they have been in the same or similar situations caring for one's own child. We are privileged that we have found one such friend, her words and deeds count. Even she admits she can not fully understand our situation as her experience was different to ours and we can say the same to her. I cried for the first times in weeks as she listened to me talking about life, work and kids.   

I know friends and colleagues will read this, I do not mean to insult you. Your actions and words are invaluable, priceless, you take the strain, reduce the pain, make life manageable, do all the things we do not have time to do. For without the support network life would be ..., life would not be, it would be a even more of a fight,  more of a struggle, more of a muddle. I dread to think what it would be without all of our friends who help in simple ways, a smile, a cuddle, listening for a short while help us get through this.

I am lucky, I value EVERY moment of my life. I value every word that comes from the mouths of my friends and their kind deeds. I value life, for I am aware of the shadow of death. When my daughter comes through this, and she will, I would have had the best time of my life.

Drugs no doctor can prescribe

An adoring smile rises from two faces, four little eyes light up, two hands tenderly touch and bodies come together in a warm embrace. Who, what and where? They were the smiles and hands of my children coming together after NOT seeing each other for days.

A laugh, a giggle, a joke, a poke, a bottom in the air and a wiggle. Who, where and what?  My daughter stuck in a hospital room for yet another night watching and talking to her grandparents using Skype.

A jump, a bump, a run, a smile and a laugh. Who, what and where? A colleague of mine who has never met my daughter gave me the gift of balloons, she (my daughter) played with them for hours.

No doctor could have written out a prescription for a hug, a chat on Skype or balloons. Yet these three things gave my daughter (who had been through surgery only a few days before) so much happiness, so much joy. These three things gave me her father so much pleasure, her grandparents and brother and mother such an overwhelming sense of relief and moment away from our grief that they were ......priceless.

A thought for the brother who misses his mother

As my daughter lay and played in hospital and my wife waited with her, spare a thought for the brother. He has played beautifully with friends and come home exhausted, yet as he has gone to bed has asked  three  simple questions.

'When will mummy come home?'
'Is my little sister ok?'
'When can I see them?'

In my head I answered
'I don't know, but I miss her'
'I think so, but last time I saw her she had a line in and was screaming. I hope, really hope she is ok'
'I am not sure'

Yet the three answers I gave in a very sooothing voice 
'Soon, very soon'
'Yes, she is getting better, the doctors and nurses are making her better'
'Tomorrow'

And has I went down stairs after he had settled I heard a cry, scream 'I want mummy, I miss mummy, when are they coming back? '

I went up stairs, gave him a gentle kiss and cuddle until he went to sleep.

A battle for life

Every second of every day I battle for my life. Through the wonders of my body, stem cells are being produced they grow and change it soldiers, doctors, farmers, cleaners and scientists. The cells battle the bad bugs; they fight the good fight to make it all right.

Yesterday Mlg little girl was waiting hours for an operation to insert a line into her thigh. The aim was to remove stem cells. Stem cells, so I have been told are the building blocks of our body. Deprived of food and water for hours Mlg played in the playroom, had a buggy ride a square, stroked a cat that was cold (it was a statue in the park), watched pigeons patter and chatter, swung on swings and rode the roundabout. We as parent's did all we could (my wife working on two hours sleep and few Paracetamol) tried all we could to contain our fears for the operation to come.

Finally, just after 4pm the call was made. Holding her tight in our arms and escorted by a nurse we walked in to the operating theatre. As we entered the room her body tensed up, terror took over and then she spoke, shouted, screamed those words immortal words ‘Not me, I’m better!!’ They, the words cut into our soul; we took her out of the theatre, they were not ready, I was angry. Moments later we were back in the large operating theatre with two beds complete with ticking machines and at least 5 staff dressed in light blue, it was overwhelming for us, I could not image what be like for my little girl.

The anasthetic to be given was gas! My wife was instructed to sit down on a chair, hold a blue tube in between her fingers and cover, almost smother my daughter. What is fear? I have looked death in the eye, I have smelt my own fear, I have faced the foreboding and the possibility of death on many occasions, voluntarily and seen it in other adults. But to see the fear in a child’s eyes, my child’s eyes, to know what can go wrong. I, or perhaps this time it was my wife, had signed the consent form for the operation to proceed, the experience and fear were very different. We had given over our daughter’s life to strangers. Had they instilled confidence in us, it is hard to tell, it is hard to remember.

As Mlg battled to stay awake, we saw the look her in her eyes as she pleaded, fought to stay awake. The look, the expression in her face and eyes was saying to my wife and I, I trusted you! I loved you! I wanted you! I like life!!  DON’T GO. DON’T LET THEM DO THIS TO ME!!!!! Why are you doing this to me? Why!! What could be say, nothing. Her eyes rolled back and forth, within the eternity of 30 seconds she was asleep and then placed on the operating bed. We left the theatre and went for something to eat it was the first food we had eaten since 7am. Within 35 minutes we were called back to the theatre, the operation a SUCCESS! As we walked closer to the theatre we could hear the yells and screams of our daughter, she was okay!? Well she was awake, screaming for her mother, terrifying the nurses! Oh it was good to have her back. Within minutes she had drunk some juice and was her old self.

Overnight her temperature spiked, antibiotics were given to help her fight the good fight, battle the bugs and fight for her life in a very private, hidden way. As for my lovely wife, she slept at least some of the night.

Another day dawns and I hope all goes well. Now it's time to make pancakes for my son!!!