A beautiful Sunday

The nurse visited today, took blood (it goes to the local hospital for testing that day) and left. All seemed bright and rosy in the house, we did a spot of gardening, I went down to our allotment, the family went around to the a friends and played. Late in the afternoon rang, the nurse had called to say MLG's immune system was down and she was coming rounded within the hour to have a jab to boost her levels up. Had we been out and about we would have had either had to return home asap or go to the nearest hospital to get the same jab. We were also told to expect to go to hospital in the next few days for a white blood cell transfusion (that is a 45 minute job), this is a typical day, everything seems rosy then....so we sit hear at home and wait.

A beautiful night?

Speak about be careful what you wish for, where was I on Friday night …the hospital with my daughter getting a top up of the red stuff.

I visited the doctor a few weeks ago and she said words to this effect ‘you are now starting to feel the effects of the diagnosis of your daughter’. How very true. I started writing it in the honeymoon period where things were a blur and everything happening so fast, I was living in a bubble. Now the reality has hit, the grind, the steady erosion of the mind, body and spirit.  I found last night very difficult in the hospital, for hours on end I heard and saw babies no older than a year old crying, choking and gasping for breath. Their parents and nurses sang nursery rhymes, walked with them and administered drugs to them, yet still the still these young lives were distressed. They clung on to their short lives, gasped, rasped for breath. After what seemed a lifetime and could very well have been theirs they settled down into some form of sleep.

As I write and read these  words back I realise that I must, for my own sake see this as a positive experience, goodness knows how, I must use my daughters illness as a positive event and tell myself that there will be a positive outcome.

To be honest there was a positive event. As I was taking my daughter out of the car we saw the moon last night was beautiful. A few clouds drifted slowly, lazily high up in sky, the air was light and cool, I held my daughter gently in my warm arms and we looked up at the moon. This is a moment in time I would never have had it not been for my daughter cancer.

An update

It has been a quite a few days since I last wrote the blog why? Effort, inclination, shock and fear.  My daughter is well or so it seems. She has not had to have any more transfusions, but she has had her fourth round of chemo, we now have two more rounds to go until the radio therapy starts. We were told the effects of the radio therapy, the schedule and what will happen afterwards, more chemo. The mile stones for us are the CT and MRI scans, they strike us with fear. We live in consistent fear of the type of cancer, it is haunting and stalking us.  MLG’s speech is improving steadily, her ability to argue is developing beautifully, her motor skills are great. Her ability to wind her brother up is a funny to watch and her determination staggering. In our heart of hearts we hope it is these attributes that will carry her, and us, through.

Saturday afternoon

Four kids playing with everything and anything they can get their hands on, laughing, painting causing havoc and annoying their parents (at times). Four adults talking about everything, anything and nothing; from bills, to TV, to telescopes and carpet cleaners. Eight people eating cakes, biscuits and drinking juice and coffee.

A lovely Saturday afternoon

A sense of community

It’s lovely to belong to a community. We have learned the value, purpose and sense of unity from our community.  As time goes by our community continues to stand by us, it is from them we gain strength, it is from them we stand firm, it is with the community's help that we will get through this.

 Thank you to our community

How is your daughter ?

This question bothers me, it distresses me and it hurts me. I will explain why.

Just image being on alert the whole time soldiers face when on active duty and people who live in a conflict zone have it to.

Just image waiting for the phone to ring and you would have to drop everything and leave your house never knowing when and if you will return, the cities of Europe went through this in WW2, the citizens of Europe went through this during the communist and fascist rule.

Just image listening to your husband, wife, child, partner, parent or pet’s breath and having to listen to irregularities just in case something changes and HAVING to call a doctor then and there.

 Just image when your husband, wife, child, partner, parent or pet stumbles and you HAVE to think is the fall normal OR is there something more serious and HAVING to call a doctor then and there.

Just image if your husband, wife, child, partner, parent or pet get a cut and it does not start to repair itself after 10 minute and HAVING to call a doctor then and there to check what to do.

IF the doctor stays it’s okay, so be it (you only hope their decision is correct, they’ve got it wrong before). If the doctor says take them to hospital then off you go as FAST as you can. 

Have you watched a lawn or a plant change through lack of water. Have any of you watched a tree change in autumn, how it sheds its leaves slowly. These changes are clear. Living with a child with cancer is living with the unknown, wondering and hoping that the pain that you are putting the child through is worth it. Wondering if the cancer is spreading or if it has been contained.

So when people ask ‘How is your daughter?’, we can only give the answer at that split second in time AND even then we do not know what is going on inside her. If people want to know how she is mentally, please ask that question ‘How is she feeling’ or something similar. We cannot answer the question ‘How is your daughter physically’ because until the situation is resolved we simply do not know.

And to answer the question, 'How is my daughter?' at this very moment in time she is happy. 

A thought

It may seem a random thought but, I am an avid reader of history. Many years ago in my teens I studied epitaphs at school. I wonder what type of epitaph bureaucrats would like receive, those who ‘followed the rules’ and the people who did not care, those who do not care.

 I wonder what thoughts went through the famous dictators of this world. What did Joseph Stalin think as he lay slumped in pool of his own urine for hours on end calling for his body guards to help? They did not come for fear of disturbing the dictator. Lavrentiy Beria, Stalin’s henchman,  had to have a rag placed in his mouth to silence his bawling before he was shot, I will not describe the deeds the man did they are so vile.   

Even the most harden, demonic people in history have had to face themselves in the moments before death.