Oh No! Hayley's Blogging Again

Feb 13 2011

Ok, so he doesn’t know it yet.  But I am writing the blog this week, it’s been almost a year and let’s face it, a change is as good as a rest.

So, I rewind my mind back to Monday, Alder Hey hospital and a lovely room to ourselves courtesy of the wonderful charge nurse, Karl.  Camille was better, but her head was still very swollen and her face very bruised. 


The day before, Camille and I had watched ‘Mister Maker’ on CBeebies, he made a green frog using a plastic cup, a paper plate, green paint, glue and cotton wool.  So I suggested we had a go at making it.  In passing, like you do.  In a hospital environment there is no ‘passing moment’.  Camille did not stop talking about the freakin’ green frog.  Within a few hours Daddy was dispatched to Sainsbury’s with a list:  green paint, paper plates, glue, brushes, cotton wool, plastic cups.  Like the true alpha male he is, Martin returned with every single item on the list, nothing extra, nothing forgotten.  So, we made the green frog, then another, then another.  Seeing as all we had was freakin’ green paint, there really wasn’t anything else much to make, so there we were, sat in the playroom making green frog after green frog – I must admit the quality improved vastly from the original prototype – and I am sure the nursing staff were all very grateful of their thank you presents.


When we are at Alder Hey, or any hospital for that matter, I am pretty much with Camille 24/7, I prefer it that way, as does Camille and we get along just fine and dandy.  On Monday, I popped to the parent’s room for 10 minutes to eat my Sainsbury’s microwave meal.  10 minutes, just 10 minutes I was gone.  I returned to be to told by Mr Alpha Male that he and the boys (that would be Mr M and Stefano) had all agreed that we could go home the next day. YAY (errr no) ….. I wasn’t so sure or confident; Camille still needed her stitches out and a scan to determine if she had air bubbles in her brain (which would prevent her from flying).  We could have gone to Addenbrookes for this, but neurosurgically, my faith and trust is ultimately placed at Alder Hey, Mr M and his team.


So the next morning, on rounds, Mr M came in ready to wave us off, I gave him a Princess Diana look – you know the type ‘do we really have to go Mr Mallucci……..???’  I’d love to say he crumbled under my Bambi stare, he didn’t, however he did agree to Camille having a CT scan that day, stitches out next day, it meant another day at hospital and another day away from Lucia, but I felt it was worth it.  We had the scan later that day and air bubbles were present, not what we had hoped for.


So, Wednesday morning, another general anaesthetic for our girl, another kiss and hug in an operating theatre, we left her with Mr M for stitch removal.  I was alone on the ward when Mr M came in and uttered the words ‘I have good news and bad news’.  You seriously do not want to hear these words from a neurosurgeon.  So, the good news was that every single trace of sticky tape from C’s body had been removed (I cannot begin to tell you how distressing C finds this), this indeed was good news.  For her, in her 3 year old world, sticky tape removal is much, much more significant and scary than major Brain Surgery.  The bad news was that her skin had not yet healed and the stitches could not be removed.


I agreed with Mr M that we would take her home that day and return to Liverpool on Sunday, ready for a further CT Scan and stitch removal on Monday, again, we could have gone to Addies, but I would much rather do the 500-mile round trip, knowing we will fly to the USA with Mr M’s blessing.


So, here we are back in Ipswich.  Was so wonderful to be reunited with Lucia, Camille has a rather shiny shiner and Lucia innocently asked if she had had her face painted.  I miss Lucia so much when we are away and I sometimes forget how big and brave she also has to be.


We have stayed at home all week as Camille has a very prominent scar, a black eye and a swollen head, all of which I fear would be too much to inflict on the general public.  However Saturday, we decided to go out for dinner with our respective families as we knew it would be a further 2 months before we got together again.  We put a hat on Camille, she took it off.  On, off, on, off.  She won.  She sat there in the restaurant, very proud and oblivious to the stares and hushed tones.  Of course Martin and I notice it, we have noticed it every single day for the past 20 months, we try very hard not to judge, or comment, we know what they are thinking as they look at their own children ‘thank god its not us’, and I don’t blame them.


There have been moments in the last week where I have wondered how much more our beautiful girl can take.  Her head is a network of scars.  Her shunt, her biopsy, her ficidual markers, her original brain resection, her new scar.   So, so many scars, all on the shoulders of a little girl who deserved so much more than the life she has been given.  She has such beautiful wide eyes, always looking at me for reassurance, for me to tell her she will get better, that there will be no more operations, no more sleepy-sleeps, no more medicines or ouchy’s.  Every day I have to lie to her, look into her eyes and tell her it’s nearly over.


We have 30 Proton Therapy treatments to undergo as yet, 30 general anaesthetics.  We will keep fighting for Camille, almost selfishly, because we have to and because we could not function as a family without her, her sister, her Mummy and Daddy, we are a little unit and we need her with us always.


I am very lucky to have met some incredible Oncology Mum’s and Dad’s along this journey.  All of them face the daily pain, the heartache, the agony of watching their child fight cancer, every single one wishing they could swap places.  The universal comment we receive is ‘I don’t know how you do it, I know I couldn’t’……if you are lucky enough not to be affected, can I respond ‘so what would you do?’ You can either run or you can fight it and I have yet to meet a single parent who hasn’t fought side by side with their child.


Camille and I are back to Alder Hey today.  We hope that we will get the go ahead to return to the US on Tuesday to commence Proton Therapy.


I know I don’t often come on to the blog to comment, and seeing as it will probably be another year before  I am back, I need to say this:  the NHS has many faults, some of which we are very aware of, yet are personal to us.  However the standard of treatment our daughter has received has been phenomenal.  We are very lucky to have Amos at Addenbrookes and Mr Garnett, both of whom have saved Camille’s life more than once.


Alder Hey, Liverpool.  It may be 200-odd miles away but it has become a major part of our lives.  The nurses on the Neurosurgery ward, Karl, Ben, Dave – absolutely amazing nurses, they looked after Camille and us so very, very well.


The Neurosurgery team:  Mr Mallucci (of course), Stefano (registrar neurosurgeon), Steve Allen (theatre manager), Liz (antitheist).  I simply cannot find enough superlatives to begin to explain how special this team is.  Each and every one has a huge role to play in the success of Camille’s operations (along with many other staff involved in the op).  It sounds ridiculously childish, yet I love them all.


Of course Mr Mallucci remains No.1 on my laminated top 5.  Brad No.2; if he became a paediatric neurosurgeon he might have a chance at the top spot.  Doubtful.  I’m sure Stefano will make a debut soon.  I luffs him J