Aug 1 2010

My mobile phone's alarm sounded at 5.10am ready for me to head off towards Bournemouth. Hayley was still a couple of hours away from waking up and after the night before, I was particularly nervous about leaving the house. The previous night I had run through as many scenarios as I could possibly imagine and setting off on time seemed to be the right option. My theory was that I could always turn around and go home if I needed to but I couldn't make up the time if I'd stayed at home until everyone was awake.

I spoke to Hayley as I was hitting the M25 and although she did not sound great, she did seem that she was going to be OK for the next couple of days until I was home again. Tuesday was also hospital day and sometimes going there and maybe seeing Amos can sometimes make Hayley feel a little better. After my meeting during the day, I phoned Hayley after the kids were supposed to be in bed; firstly, they were clearly still running around causing mischief. Secondly, Hayley had seen both Amos and Mr Garnett that day on the day unit. All of a sudden, after weeks of minimal communication, Hayley was having a discussion with both of our lead consultants about the serious topic of surgery. Camille's next scan has been arranged for a week on Monday and as it just so happens to fall on a day when the multi disciplinary team meet up, they will have a chance to review the scans very soon after the image is captured. The same day also just so happens to be the day that the consultants have their clinic in the afternoon, an opportunity for the parents to understand the current state of play. So, we will know by the end of the day what our position is.


Both consultants seem sure that we are reaching the time for surgery and both Hayley and I feel that this scan is the lead up to a September operation. The question is now where? We feel very comfortable with Mr Garnett; he is a careful, brilliant surgeon that gives us an amazing sense of reassurance when we leave our little girl with him. We are both sure that he would do everything to maximise the resection whilst minimising the risk of damage to the healthy tissue. On the other hand there may be another option. We still know that Alder Hey hospital in Liverpool own the only intra-operative MRI scanner in Europe. This potentially is something that could not only reduce the number of operations that Camille needs, but also may enable a far greater degree of resection. The conversation that Hayley had with Amos and Mr Garnett was a positive one; Alder Hey is a possibility and Addenbrooke's will set-up a meeting with them and us to get a fair impression of what benefits we would have going down that route. Mr Garnett also suggested that he would be happy to travel up with us to assist in the operation, something we had really wanted but not really held out much hope.


As I spoke with Hayley I could feel that we were heading in the right direction, feelings that I've probably had numerous times in the last year, but something is different this time. Camille is getting braver and more mobile by the day. She runs around being chased by her sister or turning the tables and chasing her back. She jumps, she climbs and she bounces. She is perfect.


I have a few concerns over her big sister; Lucia has begun to say a few things which scare me. In the last few days she has said the words “You love Camille more than me” and “Do you wish I wasn't born”. She always immediately says that she is joking, but she is four years old and no four year old is able to say those things without really thinking it. It does worry me, because Lucia is just as special as Camille and has been utterly amazing over the last year, dealing with the situation as well as any of us. I hope and pray that Lucia is going to be OK with all of this, the last thing we want to do as a consequence is to screw her up. She too is perfect.


It was great to get home on Wednesday and the next few days we were able to try and get Hayley back up to where she was and look towards the next few weeks. It hasn't been easy and when Hayley is down, she can be really down. We've had a weekend of socialising again and eaten some great food with some great people.


This week is Hayley's birthday and as she has had a particularly difficult year, I really want to make this one to remember. I've organised something in London next Saturday for her and wanted to supplement it with a trip to see Mamma Mia as both girls love the film (as does Hayley I'm sure). The issue is, if Camille goes down with an infection on Friday or Saturday we would miss the show and not be able to get a refund under the standard terms and conditions of the booking agent. I mentioned to Hayley that I was struggling due to that reason and my dear wife decided that it was going to take someone with bigger balls that me to get the tickets. So Hayley picked up the phone and began explaining our situation to the box office. To be honest, they couldn't give a monkey's uncle and as Hayley was flexing her nib ready to take down their name in readiness for a snotty letter they divulged that they were a third party agent and we needed to speak to the theatre itself. A quick call and we were sorted. Four tickets for the matinee, marvellous. Well done Hayley.


Finally, the diet is over. I've lost a fair bit over the last few weeks and have now decided that enough is enough. So, the last few days I've been hammering the crabs and sweet stuff like it was going to go off. I feel great for it, but the paunch will soon be peeping from below my t-shirts. Maybe now the pollen has settled, maybe I should strap up my running shoes and get back out there thumping the tarmac.