Dec 19 2010

Brace yourself; do not get too excited, but this week has probably been the dullest week you will ever experience. There’s been no chemotherapy, Lucia’s been at school, I’ve had a busy week at work and Hayley tumbled down the stairs on everything apart from her feet; the cornerstone to any normal week in our household.

I jest, but Hayley falling down the stairs was probably the most serious event of the week by some distance. I wasn’t there at the time but she was walking down with Camille in her arms when she slipped. The instant reaction for Hayley was to do anything to break the fall for Camille and in doing so landed on her back quite heavily. The next few days were pretty painful for her as she struggled to get out of bed and move freely. It didn’t help on Thursday night when Lucia got into our bed, and because the two of them were hogging the bed, I decided to try and shirt them across manually. So I slid my arms underneath a sleeping Hayley like a skin coloured fork lift; I heaved only to hear wails of “ouch, ouch”, so I gave up and asked her politely to move the hell over. Finally after four days the pain seems to have subsided and any thoughts of slipped discs or cracked ribs may well have gone.


Of course, the major event we are waiting for is the call from Jacksonville to arrange the time for us to go out to Florida for the Proton Therapy treatment. It already seems to have taken too long, but as far as I know it could be the difficulty that Addenbrooke’s were having extracting the surgery notes from Alder Hey to send on to Jacksonville. It’s not a huge task really but it seems to be a common trait that administrative staff are pretty hard to come by. As soon as we hear from Jacksonville we expect to be on a plane pretty soon after; we know two or three families who have been out there and all of them had only 48 hours notice before boarding the plane. This doesn’t bother us at all and actually I think we are all at the stage where we just want to get out there. Hayley’s got a feeling in her water that we will be heading out on Boxing Day and who am I to question my wife, she is very rarely wrong.


I did hear something this week that I thought was worth mentioning and is probably a frustration of many parents of children with cancer. The phrase that was used referred to when Camille is “cured”; relating to when she finishes treatment in the next few months. I think it is very important for everyone to understand that even though Camille should be clear of any tumour and will not be on any treatment, she is not cured. Our lives, like so many others will be overshadowed by the risk of reoccurrence for many years to come and it is not for many years that Camille will be cured assuming that the tumour does not come back. Hayley and I will struggle to get family to understand this and cannot expect everyone else to grasp that even though Camille may have stopped treatment, our lives will always be overshadowed by the fear of reoccurrence; not in one month or one year, but for five or ten years. If Camille did get to ten years without anything coming back, I may then finally hope that we had beaten this horrible illness.


We did get confirmation from the county council this week that Lucia will be able to come out to Florida with us for our entire stay. This was fantastic news as although we expected a positive outcome from this request, it is such a relief not to have to fight. The school have been great and we are very grateful that we can go out to America as a family and not have to worry about whether there is a school place for Lucia when we get back.


We go into the final week before Christmas hoping and expecting to hear from Jacksonville so we know where we are going into the Christmas break. Now I’d better do some shopping!