Jul 26 2009

The one thing we needed this weekend was some kind of stability and predictability after stumbling block after stumbling block getting in the way of Camille's progress and treatment.
She had a relatively good night on Friday night; the night terrors she had been experiencing over the past few weeks have been increasing in longevity so any night where a decent nights sleep is had by all is a godsend. The terrors themselves have evolved into Camille laughing and squealing in her sleep, it is a strange experience watching her. We are still holding out hope that they have been caused by the Dexomethasone steroids that she has been on since admission to Addenbrookes , but a nagging fear is that the tumour itself is causing them, and it may be the first real symptom of the tumour itself. Camille had her final dose of the steroids today, in two days there should no longer be any side affects and we will know what the root of the night terrors is.


Saturday morning I was brought back to reality with a bang when I accompanied Lucia to one of her nursery friend's birthday party. A tame affair with fifteen four year olds running, bouncing, balloon popping and various other loud activities. I was pretty glad to get out of there in the end, watching the clock for an hour and forty-five minutes is not a past time that I would recommend.


Later in the day we all made the trip to hospital for Camille's daily dose of anti-biotics . We were glad to hear that she wouldn't require any further bloods, but as the dose was being injected into the cannula , it began to leak and had to be pulled out. This has meant that today when Camille went in, she had to go through the trauma of another cannula being inserted into a vein. The doctor tried the foot once again but unfortunately is attempt failed. After a break and a long search he managed to get the cannula into the hand. It's still two weeks until the Hickman line goes back in and there is likely to be the need for at least three more cannulas before that time.


Right at the beginning of our time at Addenbrookes I made the decision to be strong for the family and to be the person who could take the detailed information on and to be a positive influence on Hayley as we tackled this dreadful situation together. If I could understand the position, I could give Hayley the feedback in a way that helped her deal with it. Over the time we have been part of this system, we've had he big change in finding out what we are dealing with and that they are treating to cure our little girl. I feel quite positive about where we are going, and although I know everything we do over the next year/years is going to be very difficult, I am in a place where I can feel confident that Camille is going to be OK. I made an assumption that Hayley would be able to feel what I'm feeling and be in that same place; as she comes to terms with the information, the odd negative comment that comes out in conversation is picked up by her and sits heavy on her thoughts. I can understand Hayley's cautious approach to the doctors opinions, her worst fears have become a reality, we've had little or no positive results for some time and her life has been turned upside down. We are going through the same situation but dealing with it in very different ways, I need to understand that we do see things differently and although I can be optimistic as is my natural outlook, Hayley needs more care and help to get to the same place; something that may only come over time.


I've just added a couple of pictures at the top that a friend of Hayley's took near our house a number of months ago. This is Camille when she is well; we will give anything to ensure that we can repeat this beautiful photo session at some point in the future.