Now for Something Different

Apr 24 2010

As this week is a bit of a momentous week for Lucia and Camille, I thought I would take the strain off Martin and 'guest write' the blog.  Unfortunately I do not have the wit of my husband, my thoughts on events in our lives tend to be a bit more emotional - and long, I apologise in advance for the length of this blog and suggest a cup of tea might be in order.

I would also like to add this Blog will come in two parts, simply because I fear I will bore you all to tears with my dreary writing.  So this is part one, Part two will be uploaded on Wednesday, 28th April.
So, why is this a momentous week?  We are about to find out what school our eldest will be attending in September, a big deal for us as we want the best, as we all do for our children, but more importantly, at this moment in time, we want some stability for Lucia and a move from her pre-school to the big school next door ,  will give her that.  The other big event this week is Camille's 3rd birthday on Saturday.  We have a big party planned for Camille on Sunday, but the question hangs in the air, will she be there? her levels are due to 'bottom out' during the weekend so we know its a 50/50 whether she ends up with an infection, celebrating her birthday in hospital, just like Christmas, New Year and Lucia's birthday party last year.
So, as usual, the week started on Monday and I had the pleasure of waking Camille from her slumber, Lucia had been up, as is usual, since some ungodly hour, keeping me entertained (whilst I struggle to get an extra 5 mins in bed) about what clothes she is going to wear today, begging me to let her wear her new white summer dress.....with thick black navy tights.  'If it makes you happy Lucia', I got a few sloppy kisses and a bear hug for that :).  So, at 8.30 I tiptoed into Camille's room, her eyes were closed but she was mumbling to herself, I said, a bit too loudly,  'Hello chicken' and the poor little thing almost jumped a foot out of bed, I then rolled the blackout blind up and drew back the curtains, this blinded her for a while and, as she lay in bed blinking I noticed she had some phlegm around her teeth, so there I was with tissue extracting the phlegm, Camile still blinking.  Not quite the 'Mary Poppin's start to the day I'd envisaged.  After kneeling next to her bed, giving her a big kiss, generally thinking how adorable she looked, I got her out of bed and into mine so she could watch me get ready for work. She went back to sleep.  Then woke up with a big grin when she remembered Nanny Pat was coming with blue dough.  
Because I know as a family we need to make our girl better, that our future depends on it,  we are constantly searching on the internet for that clue, that single vital clue which will allow us the chance to make a difference to Camille's prognosis. Thanks to an Oncology dad, we have now found that Alder Hey hospital in Liverpool has recently purchased an intra-operative MRI scanner, which is used within the operating theatre.  This meaning, that if a surgeon is operating to remove a tumour, he could stop, once he believes he has gone as far as possible, the child can be scanned and the scan will determine if he can go further to remove more.  This procedure reduces the risk of brain damage and could mean fewer operations.  We have written to Camille's surgeon in advance of a meeting we have with him in May to discuss this possibility.  I am very hopeful that we will be given an opportunity to pursue this.  My biggest fear now is that Mr. Garnett will not do the surgery.  
So, Lucia's school results, due in at 12.01am on Tuesday morning.   Midgnight approached and Martin and I thought we would have a drinkie to calm our nerves.  In fact were up until 01.30am Tuesday morning, getting slightly inebriated as the website had crashed, who knew so many Mum's and Dad's would be doing what we were?!  We had 3, yes 3 PC's up that night, between us we pressed the refresh button so many times that I have come to the conclusion, that between us, we had probably crashed the website.    We gave up, I slept in Camille's bed as I thought she looked a 'bit sad' (so Martin tells me), he skipped off to bed, knowing he could sprawl his mahoosive butt over an entire 5ft mattress.  At 7.30am a mobile phone is thrust in to my face, I blink, first thought is, ouch, my head, as I heave it off the pillow, second thought is 'ouch my head' as I remember Camille now sleeps in a bunk bed,  third thought is 'SCHOOL'.  YES!!!!!!!!!!!!!! we got it, I can't tell you how chuffed we are, it means a lot to us that Lucia gets to be a big fish in a small pond and most importantly gets the stability we all need :)
So roll on to Thursday, Camile's Hickman line is looking a little 'crusty' (hope you didn't have a biscuit with that cup of tea), a trip to Hospital which should have taken 30 mins max, ends up being a 3 hours stay, Camille needs a blood tranfusion and is severely neutropenic, her levels being 0.0, which means she has absolutely nothing to help fight off an infection.  Her own body  could turn on itself and turn the 'good cells' into bad.  There is nothing we can do except wait for a temperature that we pray doesn't come.
10 months ago when I was told Camille had a brain tumour I never thought I would see her 3rd birthday.  I thought she would die that night in my arms.  All night I held her so tight, staring at her through constant tears, wanting to scream so desperately, but the scream was stuck in my throat.  I had this desperate need to go with her, whatever happened, I had to go with her, I told Martin that she was too tiny and scared to go into heaven on her own, she would be screaming for me and she would be going somewhere where she didn't know anyone, I just couldn't bear it, the pain was, and still is very real.  It hurts everyday, every hour, every second.  
From that awful, awful night we have come so far, Camille has been amazing, she really does take everything in her stride and makes us so very, very proud.  Her relationship with her sister is a joy to watch, they love each other so much, a real genuine life long love.  It is so important to us that we celebrate her birthday and make it special for both girls, who have both suffered in their own ways.  Yet, here we are again, another occasion potentially ruined.
I remember a few weeks ago that Martin mentioned in his blog about my sleeping.  Yes, it is very true, I do like my bed.  What I don't think Martin realises is that most mornings I am awake by 5.00am.  Those mornings I lay in bed, willing myself to go back to sleep because when I sleep, I don't think.  When I 'sleep in' it's not laziness.  It is a fear of getting out of bed and having to face the realities of my life.  Seeing my beautiful girls, neither of whom deserve the life that has been thrust upon them.  My day, as any oncology mum will tell you, consists of appointments (you wouldn't believe how many), taking temps, feeling foreheads, wondering if she just blinked slowly, her head hurts, does that mean the tumour has grown? is she walking properly? she just lost her balance, what does that mean? her head is slightly tilted, her mouth seems to be lopsided, did she swallow today? her hair is growing, does that mean the chemo isn't working?  must make her drink some water so I can check she is swallowing.  This is about 5% of my worries everyday, I cannot begin to explain the pressure of just living with a child with cancer.  It never goes away.  But, more than anything, the worst feeling is the one of guilt. My genetics somehow caused this to happen, my baby had just 2 years of a normal life before this happened.  She will forever deal with the repurcussions of having a brain tumour. Nobody knows to what degree this will be - how can I live with this fact?  
So, it is a Friday night, my girls are sleeping soundly, no temps, no drama.  
I will update on Wednesday.  Keep everything crossed xxx