Hayley - Reflections

Jun 26 2011

I am in a reflective mood this week as we had the most wonderful weekend, our very close friends and Martin’s cousin, Stevie and Clare got married in Newmarket, it was a wonderful and beautiful wedding and Lucia and Camille were stunning as bridesmaids.  Given the amazing news we had last week, I felt many emotions. 


When Steve and Clare, asked us almost a year ago if the girls would be bridesmaids I cried.  I cried at the table in the restaurant when they asked us, and unbeknown to anyone else, even Martin, I cried that night and most of the following week.  I cried because I honestly didn’t know if Camille would, or could be a bridesmaid.  This was long before she had endured any brain tumour resections.


When Camille was first diagnosed, almost 2 years ago, it is an understatement to say our world crumbled around us.  We had our beautiful Lucia, such a lively, fun, loud and extroverted little girl, who herself was only 3 years old, then we had Camille, our more subdued baby, who would cling to me for reassurance, would stroke my face and gladly huggle me or Daddy whenever she could.


Camille was not robust enough for this journey, we all felt it, she was delicate and beautiful, but a fighter? From those early days as the shunt operations and biopsies took place, as the very serious meetings with Mr Garnett and Amos, I knew that her chances were slim, I never wanted a %, I knew I would focus too much on it, instead we were told it would be 'incredibly difficult'.  The tumour was just too big and the cancer too aggressive.


When we eventually got home after that first stay at hospital, the grief was unbearable.   I was convinced I would lose her and I knew I couldn't live without her.  Every night I slept with her as I was convinced she would leave me overnight.  She had terrible night terrors as the tumour had touched on a certain cognitive part of her brain, I would have to lie on top of her during the night, when the terrors came, just to stop her shaking, screaming and crying. 


The thoughts going through my mind all this time were thoughts of death, most significantly Camille's, but perhaps selfishly mine too.  I wrote letters to Martin, bought cards for Lucia's birthdays, I wrote letter after letter.  I knew I could survive for her, but I couldn't without.  I had no-one to talk to, Martin has always been the optimistic one and I couldn't bear for me to weaken him with my fears and anguish. So every night, I would go to bed before him, or go to Camille's room and breakdown. I would hold her and beg for the nightmare to stop, why her? Why us? We love our children so very, very much, they have wonderful lives - so why? What were we being punished for? What could a two year old have down to deserve this?


Those first few weeks turned to months.  It doesn't get easier, the chemo made her immunity so low that an infection could have killed her at anytime, it almost did last year.  There is no space to breathe, to relax, and to be anything like normal. She lost her hair in clumps and we were relieved that it was a sign the chemo was working (naively I might add).  She stopped eating, she started being sick, bringing up green bile when her tummy had no more food to offer. She lost her beautiful long eyelashes. She never really lost her spirit though, she kept us going, we would have done anything to lay on her bed, take that chemo, to have the surgeries, the cannula's the blood transfusions, the infections, THE TUMOUR, I used to lay next to her with my ear to hers, imagining it transferring to my head.  If only it was that easy.


All of this time I could never just look at her and admire her beautiful face, her uniqueness, her wonderful personality, because all that I could do was take a snapshot of that moment, ready to store away as a memory, because all I could think was that she was going to leave me and I had to remember every little thing.  A cuddle was never cuddle, I hung on to tightly and her head was always soaked from my tears.  I have cried on the kitchen floor for hours at a time, I have been awake all night, sobbing and begging for it all to stop.  I say this to those who tell me so often, 'you cope so well'.  No I don't, I offer a version of me coping.  You become so adept at hiding how you feel, that it simply becomes part of you.


A few weeks after Camille and Lucia were asked to be bridesmaids, we had to make some decisions that were any parent’s worst nightmare.   We like many parents we now know have been through the absolute hideous agony of waiting for a child to come out of theatre having undergone major brain surgery.  Not knowing when you hold her in your arms, as the sleepy medicine is injected into her Hickman line, whether you will ever see this wonderful child again...if she will be mentally disabled, will she know who I am…..Will she remember me? Will she live in her own world.  Or will she be physically disabled, was that the last time I will ever see her run up and down a corridor?  Will she be able to walk up the aisle for her Auntie and Uncle?


The first scan was obviously an incredibly important one.  When we heard the news both of our shoulders suddenly dropped 5 inches from the position they had been for 2 years.  But we didn't ‘high-five’, we didn't open champagne or go out to celebrate.  We know this might not be over yet as Camille’s tumour could come back; we can never relax, but we can start to enjoy her again.


Camille and Lucia held hands as they walked towards the aisle, there were two small steps that Camille couldn’t quite manage, once the Father of the bride lifted her; she stood, not quite knowing what to do, looking around her with a big grin.  A brief word from the Bride and the girls started their walk, scattering their rose petals, Lucia made sure she was ok and took very good care of her during the walk.


Whatever else happens, this memory will stay with me always.