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!!! 

Another other night away

How do you say to a two and half year old you are going to have an operation, the doctors are going to place a tube in your leg in order to extract stem cells. The stem cells will allow the doctors to give you stronger doses of chemo which will make you sick. You will probably have to have more blood transfusions. You will have to more injections in your leg which will cause you to scream with fear and go into a blind panic. But don’t worry it will be alright. How do you explain that to their older brother?  How do you reduce their anxieties?

Our solution was to make the experience fun! On Monday night we got in the car and drove, we saw the London lights, spotted sparkles and cars flashing by. Then we jumped out of the car and walked with a steady pace in the cool night air straight into GOSH.  First things first, we went to the ward, found our room, dump, yes dump our bags in and then......... inspect the play room and when I mean inspect I mean we took out every noisy, buzzy and fuzzy toy  and PLAYED. Time drew on, Mlg was happy with the playroom and Mlb knew where little sis and mum were sleeping. The lads said good bye, then came the tears and screams from a little girl who knew that once again she would be staying in a hospital room.

From what I was told Mlg partied on late into the night and my poor hard working wife had but two hours sleep. Mlg boy woke up feel secure knowing where mum and sis were.

pls take a moment to scroll down to the section below 'Perfect strangers in an imperfect world '

Perfect strangers in an imperfect world

In a small, white windowless room two people met, one tall the other small. The first person slowly, carefully stirred a cup of coffee they then turned to the second person and said in a desperate voice ‘It’s my daughter, it’s her third time. ’

A fridge hummed quietly in the corner of the room, the second person replied ‘My daughter is has just arrived, she is only two and a half. ’

Let’s call the first person Jill, and the second person Peter. Jill whispered ‘She is only nine; the other two operations did not work.’ 

Peter paused, holding a white polystyrene cup with cold water inside and then slow took a drink. Dreading the answer to the question he asked ‘What is her third time?’

Jill look puzzled, using the cupboard to support the heavy burden placed upon her shoulders by days, months, years of worry ‘It’s her third bone marrow transplant, I am her only donor. I’m her only chance. Pray for me. ’

Peter looked down and took a moment to think for a little nine year old girl he had and would never meet.

My name is not Peter, the lady's name was not Jill, my daughter is two and half and hers younger than nine. That  was an example of an everyday conversation in an everyday ward at GOSH. All four of us were and still are perfect strangers in an imperfect world.

Things that give us heart

Things that give us heart

Our Little Girl’s formidable will and love of life, feeding ducks and doll’s houses.

Our friends (and their food!!)

Our family

The knowledge that they are treating to cure

Messages of concern from all over the world and the knowledge that people everywhere are thinking of Our Little Girl and willing her to get better.

Knowing we have people of all faiths and all denominations praying for us.

Our son’s love of his sister

The nurses that listen to our endless questions and try to answer them

A charity that cares and the community that supports it

Gt Ormond St is one of the best hospitals in the world

A face full of fish and a kiss good night

A face full of fish and a kiss good night

Mlg’s is neutropenic. Once again she has no neutrophils for the past few days, that means that she has NO immune system, she is susceptible to infections. Every day a nurse comes around and gives her a jab to raise the levels, every few days she has blood taken from her central line to test her neutrophil levels. 

That said and done, yesterday she ate a few carrots (long ones), beans noodles and one mackerel. The mackerel had been grilled, it was nice and soft, the oil was oozing out and Mlg was given a little bit at first, she asked for more, then more and THEN MORE!  There was hardly any left for my wife and I. After that hearty meal she did a little jig and jog.

Just as my wife and I were getting even more exhausted at the end of the evening and the kids were going to bed, my son shouted I need to give sis a kiss. He rushed into her room and turned to his sister and said ‘I need to give you a kiss and cuddle good night’. For a minute the world stopped, the kids gave each other the sweetest kiss and cuddle, heads together, arms wrapped around each other. Sibling love, eternal love.

Things my wife and I find hardest.

Having to wear gloves to change MLG’s nappy for the few days straight after her chemo cause she’s toxic

The fact that MLG is getting used to all the medical stuff – holding out her arm and finger for blood pressure, oxygen and temperature checks. Helping the nurse with the equipment.

The fact that MLG is now proud of her bags for her ‘wiggly lines’ (her hickman line).

Her fear when the nurse’s car pulls up, she knows the sound of each one of their cars.

Having to hold her tight to stop her struggling when her dressing gets changed or she needs an injection.

Hearing her cry ‘not me!!’ and agreeing with her, every time.

Forgetting for a minute and then remembering again.

Stuff my face day

Yesterday was a 'stuff my face day'. The family went down to our  allotment and raided our pea patch, Mlg stuff her face with peas, followed by peanuts, pasta, eggs and so the list went on. To the big wide world this may not seem much, but for the world of cancer patients where parents are only too happy if the children eat ANYTHING, yesterday was a happy day.

A drop of blood and a lot of bottle!!!!

Who would have thought it, the power of the red stuff, haemoglobin!! I had forgotten that haemoglobin affects that amount of oxygen in your blood (science lessons from years ago), not enough makes you run out of steam. Athletes train at high altitude where oxygen is rarer so when they come down to sea level they run that much faster.

 My Mlg’s haemoglobin became low, she couldn't make enough herself and had been starting to go pale, sickly like a child with cancer.  Within hours of getting a transfusion of the red stuff she was back up to full steam, so much to so that just a few hours after getting back from the hospital, we visited Adventure Island theme park. Adi chose to go on the Choo Choo Train (nice), was encouraged to go on the Flying Jumbos (I chickened out), a touch of the Big Wheel was to follow, and then out of the corner of my wife’s eye she spied … the Kiddi Koasta and pointed this out to Our Little Girl. I’ve dived with sharks in Australia, parachuted out of planes in Peterborough and motorcycled to Mt Blanc BUT roller coasters don’t do it for me. Yet my 2.5 year old little girl wanted and insisted we go on the Kiddi Koasta, so all four of us went. The kids loved it and wanted to go again, the adults errrr, wanted to go home. Mlg got a lot of bottle with that bag of blood. Love life, love life to the full!!!  Who would have thought?

A bag full of blood

At 9pm last night we received a call from the local hospital to say the blood was ready, within the hour Mlg and I were cuddled togther (it was my turn in the hospital) in a small quite room hooked up to the blood machine. Over the next 4 hours a bag full of the good stuff was dripped slowly into Mlg who did not complain one bit, before dawn I was back in bed and the little one back in her mothers arms. The world is good again, for a few hours at least.

Appearances are deceiving and blood transfusion

Over the past few days Mlg has been eating and drinking regularly, she has loved playing; walking and feeding ducks yet the chemo is taking its toll. Mlg’s haemoglobin levels have been dropping steadily, having been lulled into a sense of security it looks like the Little One will have to have a blood transfusion. How will she cope with this? When Mlg sees the nurse she cries ‘NOT ME! Not me!’ What will she think?

 What did she think? Hours later we found ourselves at the local hospital having yet more blood taken this time to check the type. Once again Mlg cried out those words that penetrated my heart and soul, ‘Not me, I’m better now’ And so we waited for hours (at a friend’s house and then home) for the blood to be delivered to the hospital

The Little Devil

My Little Devil fed ducks three times yesterday driving my wife, mum and myself mad in the process, then SHE demanded ice cream (which I had to go out and get) and she ate only a little. To top it all off she did not go to sleep until 8pm then woke up at 3am driving my better half insane until 7.30am when both of them went back to sleep. Fight the good fight. 

Holiday, times gone by

On the 3rd July 2012 we thought we were doing to Devon on family holiday. If all had been well, we would be there now eating a breakfast on a farm, the kids would be going out to the feed the animals and then perhaps we would have been going to the Eden project.  On that fate full day Mlg had an MRI scan was rushed to GOSH, our life change. We could have lost her, she is still here watching Little Einsteins waiting for jam and toast to be made.  

A beautiful night

My Little Women came home yesterday, one full of beans and the other exhaused. After having half an hour's rest on the way home from GOSH, Mlg played hard, throwing balls at everyones heads, painting, watching tv and messing up her brothers bedroom. Her brother joined in the fun, both of the kids drove us mad.....Finally Mlg went to sleep and slept through the night. She has woken up once again full of life ready to play another day. Who would have thought she had just had 16 hours worth of poisonous drugs pouring through her?

Another night away from each other



The night passed with a bash and boom,

The little boy slept, his father wept,

The mother tossed, turned and yearned,

The little girl squirmed,

No vomit in sight,

The drugs dripped in, under her soft tender skin,

If all goes well the magical spell will be caste,

And the family will be united as one, under today’s summer sun.

Let’s party!!!!!!!



Back in a place a know,

I’ll show mum a thing or two,

I’m back with my crew!

Chemo today, whey, hey,

I got up early why don’t you know,

I’ll show mum a thing two!!!!



The chemo is yet to take effect, on me,

I’ve yet to feel bad,

Mum’s sad, mum’s mad, she’s been up since two (am that is),

That’s kinda bad, of me,

What the heck, I’m young, free and single!

Live life, love life,
Cause whatever I do,  mum’s love will always be true!!!!!



Dedicated to Mlg who is have a great time, while driving her mum mad.

What's wrong with my sister?

'What's wrong with my sister?' asked the little boy 'Why does My Little Sister (Mls) keeping have to go to  hospital When will she be back? My heart sank as my son said that, as I heard Mlg start to cry and curl up into a ball.


On with the painting, the drawing, on with life and having fun with my son, I will answer his question later when I have thought of the correct answer.

Two amazing kids


I met two amazing kids yesterday, they were full of life, full of fun, I sat down at a table with them. The kids were colouring in a pictures of Peppa Pig and A Little Mermaid, they were lovely, focused and then I got asked the question. ‘Can you teach me something?. Who were these kids? They were two lovely children who had been diagnosed with cancer over 3 months ago and had not been home since then. Their parents had been living at the hospital for most of the time. And why did they ask me the question? Because they missed their friends, they missed learning and they were waiting. Their lovely lives and those of their parents had been put on hold. How could I deny these two children a maths lesson, so at 4pm at GOSH I gave the children an addition and subtraction lesson, they loved it!

Chemo round two


Yesterday, MLG was due to start round two of her chemo, unfortunately that did not happen. With not a little amount of stress we arrived on time at GOSH. Titch was stressed and vocal (you could hear her screaming and crying from afar) very clearly she said ‘I’m better now, I’m better now, I wanna go home’. Within a short period of time she was weighed (they need to do this in order to make up the correct dosage of chemo) then she played, she settled into the routine of GOSH straight away, go to the play room and play.  Unfortunately for us, the nurses then discovered that we had been weighed too late in the day for the chemo to be made up and administered. So frustrating as we arrived when they told us to, rearranging our plans at short notice in order to do so. What would you do, stay or go? Would you take your child home, to allow yourself and your child to spend a night in your bed, knowing that your sweet, frightened child would have to return the next day OR would you stay the night, reduce the stress of the return journey but be in unfamiliar surroundings?  The decision was made. An hour and a half later we heard the shouts and screams of delight as brother met sister, sister cuddled brother, brother jumped up and down with joy as little sister returned home for the night. Safe to say they both went to bed late, the look of joy, peace and relaxation that was on their faces as they slept will live on in my memory forever.  

'I don't want to lose my hair.' These were the words that came out of a 2.5 year old's mouth. What would you do? What would you say? What did we do, what did we say. Stunned silence, a look and feeling of fear, a realisation that My, Our Little Girl is aware of what is happening to her and her body. I, we, need time to think how to respond.

Alive and awake

My Little Girl (who a little less hair this morning) woke up at 4.30 am for a cuddle, played, ate a cake, played with her dolls house and helped her mum blow dry her hair!!!! If she was well I would scream, now I only see this as a joy, oh boy.


http://www.bbc.co.uk/news/uk-19238439

A last look at night

Before I went to bed I tonight I took one last look at my daughter, she lay on her back, arms streached out, looking content, glowing and at peace (with the occasional cough which kinda ruined the moment). Good night world, sleep tight

The Letter

Last Friday we received a letter addressed to a doctor at a local hospital, our link doctor, it was two sheets of A4 paper folded into three pieces. The letter appeared inocent enough, it was the minutes of the meeting that the consultant had had with us when we were told the results. The bubble had burst, once again, the prognosis, Our Little Girl has a 35 to 50 percent chance of surviving the treatment, the course of treatmen is due to take 17 months, then we wait, she may have 5 years,less or more to live. The surgeon could not remove a 1.5 cm square of tumor, my heart sank, I physcially shrank. My wife read the letter, a black cloud desended over our house.' They' had said proudly that 'they' could not see any signs of the tumor on the MRI  scan, yet why could they not see  1.5cm of cells. The question that came to mind was, how quickly do they reproduce?' And on went the letter......

What can I say, MLG is having a lovely time at home, with her big brother, with her friends, with her family. The bubble is getting smaller with every brown strand of hair that comes out. How long until My, Our, Little Girl looses all of her hair, days, perhaps a few weeks at most. Shortly she will be having her next dose of  chemo, with that comes sickness, lack of appitite, time in hospital away from her family and friends. Is there a positive side? Yes, with every dose of chemo the cancer gets blasted a little more, with every day that passes with have one more day of My Little Girl screaming, shouting, giggling, cuddling, loving and getting up too early.

Lives on hold, dreams shattered
Throughout this short experience  I have seen many lives put on hold (that of other parents in a similar situations), hard work go to waste,  dreams shatter and crumble away. Cancer does not only effect the Mlg, it affects the hopes and dreams of the parents. Job hopes fade away (my wife has had to give up work), with that life chances change both of the adults and child/ren  incomes drop. Cancer, and long term illness shatters dreams and hopes, that is silent fight that the family have to deal, it will not be spoken about often. Cancer and long term illness in all its forms, the silent killer of dreams.   

The love of a brother

The day started with (My Little Girl) Mlg hitting her brother on the head with a plastic golf club as he lay on the sofa passively. My son then got his hair pulled, his ear bitten and to top it all off a kiss and cuddle. As the day went  went on he was subject to a chair being pulled from underneath him, food stolen, drink spilt but still he took it all good naturedly.  This can only be the love of siblings (I try not to think this, but how might he handle the loss of his sister, their, his love is pure). The day ended with two exhausted children who slept then woke up full of beans, ready to exhaust their parents again!!!!  

'Not me!' cried, the little girl,

My Little Girl's 'neutrophiles' (the blood cells that fight the infection) are on the rise, but still the nurse comes around in order to administer the injection and change the dressing until the 'neutrophiles are above a set level and this is where the heartbreak begins.

The sound of a car drawing up, footsteps tap on the driveway, the door bell rings, the door creaks open, voices are heard,  greetings are made. 'Not me!' cries My Little Girl, she knows what will happen. Although the nurse prepares the injections out of sight (so in theory out of mind), My Little Girl starts to shout  'NOT ME', she works herself up into a frenzy, asking, shouting, almost crying from the bottom of her little heart wanting IT to stop. Our hearts start to sink, no matter how good and fun the day has been the realisation hits once again that , My Little Girl is very ill. The nurse comes in, Our Little Girl, starts to thrash, we hold her tight, it's done, over, finished. Then I see the Hickman line once again, my spirit drops, a piece of plastic is still in her body, ready and waiting to allow the delivery of chemo and a multitude of drugs other that might have to be administered or to allow the taking of blood.

No matter how I feel about the situation, the journey my family has embarked upon, how positive I try to be, those two simple, words 'not me' break my heart every time.

To finish on a positive note, 'neutrophils' are going up, play dates need to be arranged, fun needs to be had and it started today at 4.30 am! I think my little girl loves life, she saw the moon this morning, my wife and I thought 'Not us!!!'.

A parent’s joy.

The kids woke up early, the ‘Little One’ slightly later than the 'Slightly Bigger One'. Their mum was still in bed (after having had a bad night's sleep), dedicated dad was looking after them. Dedicated dad, fed and played with ‘Little One and Slightly Bigger One. Then we heard the clumping, stumping and thudding (I really mean the dainty footsteps of a ballerina dancing elegantly to Swan Lake) of Mum getting up, the tapping of water as Mum had a shower, the word went out ‘HIDE! The mummy monster is up!!!!!’ shouted the Slightly Bigger One.

The Bigger One hid, the Little One sat drawing, the mummy monster came into the living room. The room was lit up by the Little One’s glowing smile as the mummy monster came whooshing in. A cry of joy was heard. The mummy monster turned to the Little One (who last week was weak) and asked

‘Where is the Bigger One?’. With strength of mind and body, the Little One pointed with certainty to the sofa, the game was up. The Bigger One jumped up, both of them (Little and Big) jumped on the now cuddly mummy monster.

A week ago this scene would have been a dream, now it is a parent's joy!!!!

Ever feel that life is like a film, well ours is like 'Ground hog day'.. Since 'My Little Girl' came home from GOSH every day feels like 'Ground Hog Day'. Everyday is the same or at least very similar. The kids get up at the same time (very early), eat at the same time, the same breakfast, my mum even rings at the same time AND then we wait for the nurses to come around, at the same time. Why do we have to wait, because My Little Girl has 'neutropenia', her 'neutrophiles' are low as a result of the chemo, which means that she is susceptible to infection. The local authority nurses come round every day at the same time to give her a jab every day until her neutrophiles are high. She hates this - in an otherwise happy day, her distress is horrible to observe.

There is a but, IF only the kids would go to bed at the same same time EARLY!!!!!  On the bright side,  My Little Girl is showing signs of getting a little bored of Mr Tumble....we've only had to endure each episode of 'Something Special' about 50 times each to reach this point, and there are a lot of episodes...... 

Ok, so My Little Girl has been sick (early evening) , we, (the wife and I) go through the questions.
Has she got a temperature?  No.
What had she eaten? Nothing special.
Do we ring the the hosiptal???No

My Little girl, we realize was sick because...she was screaming her head off because she did not want to got to sleep and instead she wanted to watch 'Mr Tumble'. 

Having watched Mr Tumble, my sweet little girl was offered a, one cracker and butter which was rejected as she wanted 2 crackers and butter. Oh what a life, if she was not so ill she would not be getting away with this - are we creating a monster?

Another precious day went by. My daughter ate, laughed, jumped, ran, ate, pooood and weeeeeed. She screamed, shouted, painted, had a wash, she did all of the things a normal child would do, except that she has had 4 major ops in as many weeks + chemo. My little girl has the spirit, she has the fight, as my wife says it’s those cells, those few cells that she, we must beat.

Community nurses came round to tell us, warn us and help us. Looking into their eyes I realise that the situation is serious. We laugh, joke and have fun while they are poking and prodding my little girl, yet underneath the banter they are consummate professionals who care, who are here to help us get through this situation.

I will end the blog on a happy note. FOOOOOOOD. A food rota has been set up by friends; these very kind people who have busy lives of their own are cooking and bring round food. The food is delicious and their hard work is helping us settle back into a routine, thank you very much to all of you, it is helping in so many ways.

Yesterday we had the best day ever. My little girl was jumping and dive bombing into a large bean. Later on she went for a scooter ride and ran around the house creating havoc. My little girl did a poo on the toilet (she had been doing them in her nappies while in hospital) and even complained about the colour of the seat she was sitting on. What a great day!!!!

Yesterday we had a good day, my little girl ate and drank.

Yesterday the nurses came round and reminded us what to do when my little girl gets a temperature, they reminded us what to do if her central line oozes blood (take to hospital) and reminded us what to do if we see bleeding from her neck (999, pressure on the vein).

Yesterday was a gift of a day. It was one more day to hear my daughter shout, kick, yell, laugh, walk and talk with her brother. It was the best day ever!!!!