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!!!!