Tuesday, 31 July 2012

I have had the best time ever over the past few days with my daughter on our own in hospital. Unfortunately, or should I say fortunately, my wife had cold last Saturday and was sent home, as a  result I have spent the last 4 days bonding with my daughter. I gave her cuddles, was there for her during her latest operation (more details tomorrow), did everything for her. In return for my love, upon returning home, she, my beautiful little girl, said very clearly at the top of her voice 'don't want you, I want mummy, go away!!!' whilst kicking me (I did nothing to her).  And I was afraid she did not have any fight left in her :-))

Friday, 27 July 2012

My daughter had good day yesterday, my wife, unfortunately she had her ups and downs. My daughter was bright any sunny, she had her favorite visitor her brother . He turned up in the afternoon and proceeded to take out most of the toys in on of GOSH play rooms and give them to the little one. She loved seeing him, she glowed, he was thrilled. It was more like going to a play house than  visiting someone in hospital.

Putting him to bed was different matter. He was slightly unsettled, then there was the crying, he said 'I miss my sis. When is mummy and sis coming home?' After a while, a chat, a pat on the back, a cuddle and reminding him that when he played with his sis, gave her a kiss and drew pictures for her it was helping to make her strong and better. After that he settle down into a deep, restful sleep. He woke up full of energy waking me up at 5.30 roaring to go.And while he was sleeping soundly the chemotherapy has started.






Funny things happen and the memory is a strange thing. Here is one incident I forgot to mention earlier in the blog.

The toilet seat incident. We were toilet training our daughter before all of this happened, the day after the brain drain the little madam wanted to go to the loo but REFUSED to do a poo in her nappy, frantic texts went out and who came to the rescue a banker.  A very kind friend of ours works in London and brought us a pretty pink toilet seat. Problem solved, he is my daughters hero (I would say he was very confident as well, I can just image people's faces on the tube, a tall very smartly dressed man carrying a plastic bag, lurking inside was a bright pink flowery toilet seat), she could and did go to the loo and do a poo, even though she was wired up and had a drain in the brain.




Thursday, 26 July 2012


Yesterday we were taken in a parents room (my gut feeling was that it was not good, a doctor and nurse looking into our eyes, talking to us with compassion). We told the details. The if, but’s, where’s, when’s and how’s. To be honest it was a blur, anger, numbness, resignation, fear and tragedy. If this, but this, ultimately we were told the prognosis, it is not good, the odds are 35%-50% of my daughter pulling through. The coming years will be challenging.

As the day went on and the realisation of what we were told sank in, that our beautify (she is, I am not just saying that) little girl would be going through hell, that our son would not be able to play with his sister as often as he likes and that she would lose her hair, it hit us. We went to the play room where a music teacher was running a session for the children in the ward. We saw parents with children who had cancer, finally after 10 minutes I realised. I, we were one of them, our, my little girl has cancer, it is life threatening, it is possibly terminal. I was numb, then as the day went by my wife and I started doing the numbers, ok, I am not a betting person but what are the odds that:

a sperm meets and egg and we had our daughter—millions to 1

I met my wife – (it was fate) no—1000’s to 1

my son got on with my daughter --  50- 50

my daughter got cancer, about 1.5 in 10, 000 (according to US statistics)

a person will win the lottery 1 in 13,983,816

So really although the odds do not appear to be good, taken all the above numbers into consideration they are not bad. Plus, we have the knowledge that every day is precious, that the more positive we (our friends and family) are the better my daughter will feel, the higher the chances of success. So, let the fight begin, maybe, but no? Let the fun begin!!!! Yeh!

Wednesday, 25 July 2012


The voice that cannot be heard is one of a little boy, my daughters’ older brother, my son, who woke up in the morning realising that his mummy is not at home to switch on the TV for him, make his breakfast and read him a story. The voice that is often forgotten is one of a little boy whose sister is not there to play with, to annoy, to cuddle and kiss. The voice that cannot be heard and is often forgotten is that of a scared, frightened, sweet sibling.

My son’s behaviour changed, slightly, but it changed, he was a little more stubborn, a little more sensitive, only parent would spot these small, subtle things. He needs support from all around. Thank you so very much to all the friends and family who are supporting him, occupying him, making him smile, looking after him in the mornings, afternoons and evenings when we, his mum and dad cannot. Thank you from the bottom of my heart to the charity who will be providing support for him.  My sons behaviour has changed slightly, he was playing me up, being a cheeky chappy, a stubborn so and so.  I had taken him out for a bike ride and played with him. He had chatted to his mum and sister but still he was playing me up. I asked him why, I asked him if he was worried and he said very clearly

 ‘When can I see mummy and sis? When are they coming back?’

The answer I gave was simple,

‘They will be home soon and if they don’t come home soon you will visit them.’

With that, he went on playing. A simple question, a simple answer, a child, my son was reassured at least until the next time.
Yet another judgement day is coming. There are things that I would have liked to have written before this, but time has not allowed me to do so. Judgement day is coming. I am sorry to all the friends and family that have helped if I have not included some of the kind and funny anecdotes that have happened. I will include in future I promise. 
 
I cannot sleep. My son sleeps soundly at home in his own bed. My wife and daughter are not at home, they are in the hospital. Recently a central line was put in; this will enable the administration of the chemotherapy and a lumbar puncture was done. Within minutes of awaking from the operation my daughter was tucking into a rather large ginger bread man, stuffing her face with chips, having a drink of apple juice and watching  the Justin Fletcher  DVD that had been bought for her by our very kind friends. 

It is not the chemo that bothers me, it is the waiting for the results of the lumbar puncture.

It’s funny, but as I write and read back what I have written it is like reading a book or watching a film. This is not happening to me, nor to my family.  My daughter, who only today bit my fingers very hard and enjoyed every second of inflicting pain on me (just for the fun of it (more fool me for saying ‘bite dads finger’)). Who enjoyed punching me once again, is getting better. But she is not. My chubby little girl is not getting better, every moment that passes by the cancer spreads and grows, just that little bit more. Every day that has passed since the operation on the tumour she has got stronger! She has walked across the rooms, bumped her way down the stairs, gone on a mini a train ride and drawn a picture.  

Staff at the hospital are fabulous!!! They are working as fast and hard as they can, I cannot fault them. Yet as I walked around the ward and saw all the children without any hair, looking frail, connected to machines that whir and buzz I began to realise that my daughter was, is one of them. To look into their eyes, to see the parents and chat to them, I find it incredibly difficult to appreciate that I, we, as a family are one of them. 

As I looked into the eyes and heard the voice the head doctor I realised that all is not well. Judgement day is once again upon us and soon we will hear what will happen. Life or death? Treatable or terminal?  If it death, let it be soon, I believe in quality of life and I do not believe that anyone should suffer. If it is life, well let’s get on with it. Let’s fight the fight (if my little girl fights half as well as she punches then the cancer does not stand a chance!!!). Let’s see what tomorrow will bring. (apologies for any typos)

 

Monday, 23 July 2012

We were advised not to worry if the operation took a long time - in some cases that meant the results would be better. So on advice we went out to a restaurant which was the first time in days that my wife had left the left the hospital, as she was walking out she almost got the shakes, she had not left the 5th floor of GOSH for days.... What would the outside world look like? As it turned out rain, rain and more rain. 

The question on our minds was, when we returned to the hospital how would we find our daughter? Would she be dead or disabled? We had been told what might happen, loss of speech, loss of movement and stuff I care not to remember or share. Would we get our little girl back? Would she, her personality still be there? Would she suffer? I had contacted people for funeral arrangements (just in case) and had told the admin assistance of the ward what I had done, the look of shock that came across their faces was immediate 'We do not lose children here, it doesn't happen!!! '

My wife and I went for a walk and something to eat, a friend of my wife's and my sister met us down the pub for another lunch (and a very small drink) and finally after 5 hours we walked back to GOSH. It was still raining and the little one was still in theater (not watching Mr Tumble or Something Special) but under the knife. Two hours later we were called down to see her. As she came round, with a very large bandage on her head we were told they had removed a 4.5 cm mass near her spinal column. The nurses were testing her reactions, I went to give her a kiss and the first thing my sweet, kind, gentle daughter did was to give me three right hooks to the chin!!!!!! YES, her co-ordination was fine (as far as I was concerned), her personality was still in tact (My little girl who has cancer, loved and loves to punch and kick me, it's a game for her, a pain for me).  Then it was back upstairs to the recovery center in the ward. Then the waiting began.
In the morning went back to the hosiptal and saw the results of the surgery. A hole had been cut into her head and a line run through to the stomach of my chubby little girl. A line was coming out and there was clear fluid coming out, running into a bag, the watery substance was the 'water of the brain'. With out exaggerating there was at least 2 mugs fulls of 'water'  in a bag, it was this that was sitting, squashing her brain, and more was still trickling out.

The day past, doctors, surgeons, nurses came and went. If they came in as a group I got worried, it was like good cop, bad cop, who would tell us what news. I tried to looking for hope, it was like watching a TV program, it was TV program, my smiley, chubby girl was no longer, she was just laying there passive, barely moving, spaced out, like a little doll. Machines were beeping, time just past, slowly.

We were told that Adi would need another MRI scan to check what the 'mass' was, when and what day this happened I can't remember, I know it was a 3 weeks ago. I also know that I had to cancel our summer holiday, arrange things for my very active, cheeky son to do over the summer.

I had discussed with my long suffering wife what to tell friends, thank goodness for mobile phones and Facebook. At 9.45 pm the evening after the MRI scan, I posted on Facebook what had happened, within minutes I received a phone call, by 6.30 am the following morning  there were over 25 posts sending messages, my wife was overwhelmed with text messages. By the evening food runs had been arranged (our friends would ensure that we would not starve). Some very kind friends helped pick up the cheeky chappy, they fed and watered him for several days.

I find this next bit funny, heartening and just, just, well actually I am lost for words. The word had got around that a my little girl was ill, suddenly I was told that prayers were being said by Nuns, Priest, Rabbis, Imams and Monks all over the world for my little girl, from London to Jerusalem to Bangkok and Melbourne. People of all religions finally seemed to agree on one point, that they should pray for a little girl that they did not know.  A little girl who was laying, fighting for her life bed, with fluid steadily dripping out of her small soft head, with a tumor and cancer growing.

Several days later it was the day of the BIG operation, well not the big operation but the operation to remove the 'mass'
Whenever my wife is away (which is rarely) I can never sleep in our bed, call it love, comfort, missing a warm body to cuddle, habit, an affliction or addiction (I'm addicted to her really). Any how, I could not sleep, THEN the text at 2.15 am....'surgery now, pressure building up'. Oh, ahhhhhhh, ooooh, and so I had very little sleep once again.

In the morning (2.30 am) there were practical things to do, email work, phone work (leave a message) I really could not face talking to them at 7 am and speaking to them in person. Then at at around 6 am I went go round to my mum and got my son ready for school. But what would you say to a little boy who understands lots? You sis has had surgery (I didn't know what had been done)? Mum is not coming home for a few days? Or you sister is ill and you should see here in a few days.

To be honest I can't remember who took my son to school whoever it was I am sorry I have forgotten, please do not be insulted and please understand that some days and moments were foggy. If it was a friend, thank you very much, if it was my mum, ta.
My daughter and wife were taken to GOSH (Great Ormond Street Hospital) by ambulance, I went home to sort out arrangements for my son of 4.... A very kind friend looked after our son while we were in hospital and getting the results and then took him round to his grans.

But what do you say to a little boy... well nothing really... or just that 'Your little sister that you love, that takes your food and runs away and you enjoy playing with is very ill'.. I couldn't say that. How about nothing?  Not a good idea seeing as he was sleeping at his grans house for the night. 'Ok, son, your sleeping at grans as your sis has to stay in hospital, I promise you I will be back in the morning.'

I was in shock I drove up to GOSH to meet my wife, when I got there I was told by my wife that a cyclist with a LOVE for life had ridden straight in front on the ambulance (which had it's blue's and two on) errrr nahhh. I wonder how he would feel if he had been knocked down and vehicles did not get out the way, or if it had been HIS daughter in the ambulance?!!!?

All of the  doctors and nurses were all lovely, GOSH deserves the fab reputation it has. A very nice doctor came in and had chat, asked us the symptoms and said that it was classic symptoms of brain tumour, the 'mass' as they called it was pressing on part of the nervous system causing all the problems. If only we had known we would have taken her in sooner.

My round faced, sweet little girl had not woken from the anesthetic, something was wrong. We had been told it was water on the brain. I had heard about it, but did not know what it was and what the 'water did'. Water on the brain's techi name is  hydrocephalus, it causes pressure on the brain and the 'mass' or tumour was stopping the water drain.The doctor said they would be operating in the morning so at about midnight I went home to sort things out. The drive through London was lovely and refreshing, but having got up at 5 am that morning for work I was tired and in shock, little did I know what was to come.

Sunday, 22 July 2012


It all started for us before Easter, my little girl of just over 2 was being sick at irregular times, for no particular reason, once a week. Was it food? We weren't quite sure. Was it a virus? Some friends thought so but there was no temperature. Every night we went to sleep not knowing if she would be sick, so our sleep was light, our worry became heavier.

As time drew on (I am talking a matter of months) people and doctors said it's adenoids or  reflux. Back and forth to the doctor we went. At one stage we ask to get her referred and a doctor said 'What for?'......sorry, but who is the doctor, personal we did not care, we thought JUST GET A specialist so see her.... how much was the doctor getting paid?  How many years of training? Get on a b%$$&£ internet and look something up! She referred her to a local hospital, still nothing. By now we were so worried that we went to a private specialist ear nose and throat doctor (we live in the UK) as by now we were very concerned, we paid the money, bought the drugs still no change. Two weeks on, she had lost her balance, her ability to walk. THEN we took her to an ear nose and throat doctor, still nothing, ‘it might be neurological (a problem with the brain)’.... How little did we know or suspect!!! Through calling the doctor and hospital my wife had an appointment with the pediatrician  at 10 am the following morning....that’s the nightmare ended and started.

The little lady was given an MRI scan at 3.00, we were warned that it could take 2-3 days for the results, ½ hour later we were followed out by 3 doctors and a nurse. ‘We have something to tell you’... the wait, the look in their eyes was telling, it was just like on the films, it was from the films, it was not us, not our daughter. ‘We think your daughter has a growth’.... in our language a tumour. Full credit this time to the NHS within hours little Miss was at Great Ormond Street Hospital.