Hayley Guest Blog

May 16 2011

Anyone who has regularly kept up to date with this blog will know how hard our journey has been.  Camille has had three major brain tumour resections, over forty doses of chemotherapy, thirty-three rounds of radiotherapy, numerous shunt operations, septic shock, many, many hospitalised infections, acute renal failure, three Hickman line insertions....I honestly could go on, the list of procedures Camille has endured and suffered seems endless, the one statistic that astounds me is that she has had around sixty general anaesthetics in the past twenty-three months. 


We are now at the end of this phase of treatment, I call it a phase, because I don't want to tempt fate.  Superstition becomes a friend while you’re in the midst of uncontrollable forces around you.  When Camille was first diagnosed I told her surgeon I didn't want to see her scan, I told him I would look at it once it was clear. We’re now twenty-three months on and even with a clear scan, I still will not look; superstition.

Camille started pre-school two weeks ago and I cannot begin to explain the difference this has made to my gorgeous girl.  For two years she has been pretty much an invalid, either on a ward having chemo where she cannot play with others, or stuck at home, fearful of visitors with children because of her fragile immunity.  This month marks a year to the day where we almost lost Camille to septic shock, once you live through that, you never take a chance.

So starting pre-school was a huge challenge for us, at least we thought it would be.  I assumed she would be clingy and afraid of the other children and yes, to an extent she was anxious, but her fears soon evaporated, thanks to Sue, Meryl, Laura and the wonderful ladies at her pre-school, she was 100% confident from day two, telling all the children about her NG tube, Hickman Line, shunt and lack of hair. She is so excited on the days she goes in.  On Wednesday I turned up early to collect her; I watched Camille on my own for a few minutes, without her realising I was there.  This was honestly one of the most wonderful parts of the last two years, because there she sat, surrounded by children who didn't care less about her bald head, for the first time in two years I saw her as 'normal', she was laughing, clapping, bright eyed and beautiful.  She reminded me what normal is and the emotions that I felt in those split seconds are hard to describe, absolute pride, above anything else, she just wants to be normal, she wants to be four years old and carefree, enjoying her new best friends. 


Today we visited Dr. Amos at Addenbrooke’s.  Amos is always a calming influence on me and despite the ups and downs we have endured, he is on our side, he listens to our wild ideas and responds in a measured way, he has never patronised us or told us what we want to hear.  It was really good to see him and it took all my strength not to give him a big bear hug. 


It's safe to say since Camille's diagnosis I have had a few sleepless nights, proper sleeplessness.  When this happens I re-live certain moments, the day Camille was diagnosed, the moment we nearly lost her last year.  I also remember comments made to us by various consultants, Dr. James at Ipswich Hospital, telling us her tumour was 'very large' and 'there is always hope'.   When we had our first meeting with Dr. Amos post biopsy, we had a long chat about her treatment plan and at the end of the conversation came the moment we had to ask what the prognosis was.....I told him I didn't want statistics, he told us it would be 'extremely difficult to cure'.  This comment, more than any has kept me awake at night.


So today, after having a good, positive conversation with Amos I asked him if he still felt the same, he said he thought it would be extremely difficult to get to where we are.  But got there we have.  We know the road is long and uncertain and we are far from over this, but I know we have done absolutely everything in our power to get to this stage, where she now has as good a chance of any Ependymoma patient of recovering.


As good as it was to see everyone at Addenbrooke’s today; we came away with a heavy heart.  Last year we met the most wonderful eight year old boy. He had a rare brain tumour but both him and his parents were up for the fight; he underwent surgery, high dose chemo and radiotherapy.  I was thrilled to see him and his family today and enjoyed having a chat and a cuddle.  I chatted to his mum and dad when he was out of earshot only to be told his tumour has come back and he is undergoing palliative care.  This is the most amazing child, surrounded by an amazing family.  The hardest part, said Mum, was that she couldn't bring herself to believe there was no hope......neither can I.


The only good thing to come out of this has been the amazing people we have met on our journey, other Oncology parents, medical staff at Addenbrooke’s, Alder Hey and at the various hospitals in the US, new friends supporting the charity, new friends who just want to help.  Our families have been an amazing backbone to all of this and I am incredibly grateful for their support.  I have met people who will shape our future and I who I will forever be indebted to for getting us through some of our worst moments. 


Camille's Appeal has also allowed us to take some positivity out of this, a small charity that was started due to some very generous whip-rounds, we are now able to donate a 6-figure sum to Addenbrooke’s and help other families, like our own, undergoing treatment in the US.  We are also delighted that Addenbrooke’s has 3 families out in the US and are planning to send more in the future.


Something good had to come out of this. 


Mr Mallucci, Mr Garnett, Dr. Amos, Dr. Danny - we owe you one ;)