The Dust Settles

Sep 12 2010

With all that has been going on with Camille this week it would be easy to forget that her big sister was turning five. For a family like ours, no day is normal, but for your children and for each other we would love to make birthdays special. I was thankful to my boss for cancelling a meeting I had in Manchester scheduled for Lucia’s birthday, I can’t imagine being anywhere else than at home for her, but sometimes I am at the mercy of other people.

Lucia woke up fairly early on her birthday and promptly woke Camille up by her excited skipping over our landing. She was able to unwrap her presents before heading off for school and once again the all four of us walked through the school gates together. As soon as Lucia had been guided into the building by her teacher we headed off for Addenbrooke’s. The detail of our meeting with Amos was in my midweek blog and still we try to understand and contemplate what he was saying in that meeting.


When we picked Camille up from my mother’s house on the way home it all felt very surreal and extremely difficult to face. Camille is so well in herself at the moment; you can’t possibly imagine the feeling of having to send her to a place which is unknown with regard to her physical and mental abilities.


I had a meeting booked that afternoon, so had to go off to present to three people who had no idea of what was going on in my life, or the feelings that we ready to explode at any minute. Sitting behind my laptop, I spoke slowly and with little purpose, a contrast to the meeting I had had with the same people just a few days previous. When I left the meeting I rushed back to the house to meet up with Hayley and the rest of the family for a birthday meal at Pizza Hut for Lucia. We felt really low, but I wanted Lucia to have a really nice birthday so I was trying to keep my outside appearance upbeat and normal. I remember Hayley saying to me that it didn’t seem right me being happy and jovial only hours after the meeting with Amos, which I completely understand. The truth is the last fifteen months has been an act, either for Hayley, the girls or to even convince myself sometimes; it made little difference to be happy for Lucia.


The day after the birthday I was at home all day with Camille and Hayley while Lucia continued to enjoy school. During the morning Hayley took Camille over to our local park just around the corner while I sat at my laptop trying to focus on a blur of words. I sat there and within seconds a stream of tears began to splash down on my keyboard as I let the realisation of what Camille is facing come to the fore. I cried for a few minutes before trying my eyes and it was that moment that an air of determination came over me, similar to something that happened during the first week after Camille was diagnosed. Nothing has changed, but in my mind we have to do everything we can to ensure that she is not only going to survive but also that she is going to be OK. How do we do this? The truth is, we’ve done so much of it already, we’ve gone further than most would and for this I give a major chunk of the credit to Hayley. Hayley’s dogged determination has resulted in us being aware of some many more opportunities for treatment, including the proposition of Proton Therapy to preserve Camille’s functional state as well as seeking out the best surgeons in the country if not Europe to perform the risky operation. Can we do more for Camille? Of course we can; Hayley again on Thursday raised the question of why should we have to do the whole resection in one operation, could we go as far as is comfortable and then offer some chemotherapy to monitor whether it has any further affect on the remaining balance. This option wasn’t discussed with Amos the day before, but a quick phone call back to Addenbrooke’s and it now sits on the table next to full resection. We’re not in denial, we know it all has to come out but as Hayley rightly said; what if the chemotherapy kills a few cells that were wrapped around a vital nerve and enabled an improved position for that final percentage of tumour.


This is now the focus we have on the meeting at the end of the month, we know it won’t be easy, we know it will be terrifying, but we also know that by putting Camille into this position with the top surgeons and the best equipment we have done all we can to ensure that our daughter lives a long happy life reaching as high a potential as is possible.


On Saturday Lucia had her school friend Izzy over and we took all of the girls down to the beach to fly a kite. The truth is, there wasn’t much flying going on as Hayley and I struggled to control the rotation of the kites in the turbulent cyclone being caused by three stories of beach huts on the Felixstowe beach. The girls had fun I think and it was great that Camille was able to join in with Lucia and Izzy on equal terms; both girls looked after her really nicely and made her feel part of the team.