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.

The broken silence

This blog was and is meant to share with the world what life is like living with a child with cancer and ALL its consequences. I have many reasons for not writing since last last Thursday, the reasons range from emotional  pain and strain through to stress and feeling low.

This time of year is hard, for me it as time of reflection, a time to look back and look forward, I have have no idea what the year ahead will bring, it will be hard, challenging, tiring, frustrating and so much more. I only hope we have the strength for it. 

I live in a world where every word, expression, pause, look, can and will be read. Actions or in actions will be noted. I live in a world where every phone call, movement, change in temperature, breath is noted everything is under the microscope. Everything my family and I do is measured. I try not to look back and think what have my family and I have done to deserve this. As a wise woman said, this is an unhealthy and destructive way to think. As a woman said 2-3 months in is when things start to hit home.

Swap, see what it is like to suffer from sleep deprivation, live on nerves, yet have to remain calm in every situation, be measured in every response. I find it ironic that few people now give advice, it is easy to suggest, state, infer, what would they, you do? What would you do in my, our situation?

Here is glimpse into the past of 10 days. My wife has been suffering from severe headaches. A few nights ago we were up EVERY half an hour until 11.55pm checking our daughters temperature watching it creep up from 35.9 to 37.4 degrees dreading that another 0.6 of a degree and it would have meant phoning the local hospital, our fear was that if it gone to 38 degrees and held there for 1 hour our daughter would have gone to hospital. Added to that within the past 10 days MLG have 3 blood transfusions (red and platelets), one CT scan and a phone call to discuss IF Mlg will be having radio therapy. Mlb a has had a cough and cold which he gave to his sister, Mlg has had a bad cough, her immune system has been zero. My daughters Hickman line has been mucky and oozing (a sign of possible infection and not healing) the dressing has had to be changed regularly and I have heard the distress she has been under every time the dressing has been changed. There have been other things that have been going on which I choose not to share, they are too close to heart.  My question to you is how would you cope? Cancer spreads and its many effects are hidden.

As I read this back I see the frustration and fear that is in side me, inside my family. My daughter is well at this moment in time, yet who knows what the next second will bring.

Anyone want to swap?

Going to the bank for a withdrawal

Some people go the cash point to get out money, yesterday evening I went to the blood bank with my daughter to make a withdrawal from the bank, the platelates were transferred within the hour, then back home for TV and cuddles.

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.

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?