It's the Milky Bar Kid!

Jul 17 2011

Camille is going from strength to strength now that she has been able to get back to a normal life like other children her age; step by step, tube by tube, we are starting to make up a little lost ground from the last two years.


When I last blogged, I was on a train heading to Bournemouth while Camille was entering the operating theatre at Addenbrooke’s Hospital to have her Hickman Line out. The procedure was of course pretty simple and Camille was out in no time at all. She did suffer a little bit of pain that afternoon but on the whole, she was in great spirits by the next morning. It must be weird for Camille not having a Wiggly for the first time in over a year. The last time she was without one was when she suffered the Septic shock last May, at that time she probably didn’t even miss it; she was far too ill.


With one tube gone, why not dispose of another one? Camille has slowly but surely begun to eat food. Her current diet consists of a large volume of Milky Bar yoghurts and the odd morsel of ham sandwich. I’m sure you will agree, the thought of living on a very sweet, sickly desert is enough to get anyone excited but I hate to think what it’s doing for her  digestive system but let’s just give you one indication to keep you mind boggling at the thought; Camille’s poos are now Milky Bar yoghurts in texture and colour. Obviously we’d love for Camille to sit down with us and tuck into a lovely spag bol, or a big plate of sausage and mash. Beggars cannot be choosers and while Camille is eating something, anything, we are happy.


So, after a week or two of Camille’s intake consisting of just enough calories to get by, we whipped the nose tube out. Like before with the Hickman Line, Camille felt lost without her beloved “Tubie”. She slept in our bed that night and woke up caressing her cheek where the two foot long tube had been plastered for two years. The NG tube is the biggest visual change to Camille, she now looks like any other little girl who she goes to preschool with. I’m not sure she feels the change too much, but I do, I don’t feel people stepping up their pace to walk in front of us just to get a better view at the “ill kid”. Visually, her appearance is continually changing. Camille’s hair is now getting reasonably long, covering the major scars she has mapped across her scalp. The only apparent scar that is still clear is the large hockey stick shaped scar that Mr Mallucci went in through in both of her first two major resections. It won’t be long before this is covered and all evidence of invasive procedures will disappear.


That statement is only in fact half true. The evidence of Camille’s surgeries, radiotherapy and chemotherapy will always be there, and probably pretty clear to all of us that know her back story; whereas any new to Camille will not know the reason for her subtle issues. Her fragility, her mobility, her squint and poor hearing; these things are probably going to be with her for many years to come if not the rest of her life. Does it concern me? Not as much as it probably did a few months ago; Camille will find her niche and do whatever she wants to do and it’s our job as parents to help her find that niche.


This support also applies to Lucia who is a remarkable young lady. I am sure that she will find something that she is brilliant at and excel to a very high level. I’m starting to think that her ability to talk non-stop for 18 hours a day could lead her towards a life in Sales.


Now that I have announced the wonderful news that Hayley is pregnant we can begin to fill you in with the latest news up to the birth in early 2012. Hayley in fact is having a bit of a difficult time with it at the moment because of this incredible tiredness that is overcoming her every day. It’s not easy as I’m busy with work and the girls are incredibly demanding; I think that she has gone to bed before 8.00pm on seven out of the last ten evenings. Weekends are catch up time for Hayley, with the girls enduring the boring life that I lead. As an example, both girls hit the car park at a local running event with me to leaflet drop adverts for our 5 mile sponsored run in August. Lucia loved it, but Camille just wanted to put leaflets on the yellow cars of which there was one.


This week is the last week before the summer holidays and Camille’s last week at preschool. The ladies there have been wonderful and so welcoming to her. Hayley and I popped in this week to receive a cheque for the charity and had the opportunity to see how much Camille enjoys it. She was sitting with all the boys and girls in the circle singing songs and almost laying across one of the girls who was helping that particular day. It was great to see and I hope she takes to school as quickly as she has with the guys at preschool. Thank you everyone, it’s meant so much.