The Shadows

May 23 2010

Everybody is aware that brain tumours are extremely dangerous and your first assumption, like ours back in June last year, is that there is not much hope of survival. Hopefully, now that you have joined us on this journey over the last eleven months, you know that tumours are curable and that the doctors who have the task of looking after children like Camille, will do anything to not only make sure they survives, but also that they has the highest quality of life possible post treatment.

It’s therefore also important to realise that the tools the doctors have in their kitbags for treating brain tumours are in themselves potentially very damaging to children being treated. That is where we are today; Camille is still recovering from the line infection that threatened her life just a few weeks ago, a risk associated with having a Hickman Line for giving chemotherapy drugs. We still are no closer to knowing whether there is any lasting damage to her kidneys; like with any of the potential effects of treatment, the outcome could be temporary or permanent. This is the reason that Camille’s Appeal exists; we recognise that the treatment that will save these children’s lives is potentially going to alter their basic abilities for the rest of their lives. We want to give them every chance to rehabilitate and live normal, fulfilled lives.

We are now finally at home, but we didn’t make it out of the hospital until the tail end of the week. Hayley did the majority (in fact all) of the overnight hospital stays this week as I stayed at home with Lucia and worked as we would on any normal chemotherapy week. Camille was OK by the beginning of the week, nowhere near 100% but certainly over the worst of the infection and her kidneys had begun to slowly function to a level. When I went back in to the hospital later in the week, my breath was taken away when I saw Camille and how much weight she had lost. She’s now down to just over twelve kilos, a weight she hasn’t been at since the early stages of treatment. The feeding regimen that we are now working to required Camille to have more fluid than she has ever had of a baby style formula as she needs to have her protein limited. Over the week she was regularly sick in hospital and now we are at home, it has become ridiculously hard to get all the fluid into her and for her to keep it down. The easiest way to get the feeds into her would be to keep her on a pump all day on a slower rate, but if you want to try and live any sort of life and at least pop to the shops you just can’t do it. This means that we are giving her short sharp blasts of the feed during the day which she is struggling with; you can physically see in her face her working so hard to keep the feed down.

It was Thursday when we managed to get out of hospital but only after a little subtle pressure from Hayley. I do jest a little, we were due to be discharged on the Friday but so that I lives could be a little easier around work commitments they agreed to get the medicines ordered and discharge Camille that day. It was brilliant to have Camille home, and although we arrived home quite late those ten minutes in the house with Camille, Lucia and Hayley was enough for me. I had to go out to a Camille’s Appeal committee meeting within minutes of getting home, but at least Camille was home.

Hayley had suggested going away for the weekend, as this would really be our only opportunity for some considerable time to stay away. We looked at various options: Southwold, North Norfolk, Brighton, but in the end we had to put that idea to one side as Camille was still really not well enough to be away and the feeding situation would have been too much for the break. Therefore, we decided to have a family weekend at home, out in the garden, splashing in the paddling pool. After a quick trip to the hospital for blood levels to be taken, I pumped up the kid’s paddling pool and Lucia insisted on helping me fill the pool with water. Lucia has had two full days of pool fun but Camille was not really confident enough to be in their alone and just paddled from time to time with mummy holding her hands.

On Friday night, Hayley and I were about to go to bed when I heard her in the girl’s bedroom. I went in to see what she was doing and she told me that she wanted Camille to sleep in with us that night just in case she was sick. Now normally, Camille will sleep through the night and is regularly sick at about 6.00am. More often than not I hear her gagging and make it through to her bedroom before she is actually sick. Camille is also a terrible hog in the bed and more often than not I end up with a postage stamp sized section of bed. I really didn’t see the need to carry her through and unsettle her with her being fast asleep as she was. Hayley really didn’t like me being slightly annoyed by this and said very little, but what she did say was very hurtful. I will say that Hayley’s sleeping tablets do make her have a funny thirty minutes before going to sleep, so I took it with a pinch of salt that night.

It’s funny really, Hayley has said on numerous occasions that I have no idea how she is feeling and what it is like to continually regurgitate really dark, dark thoughts. She’s right, I have no idea. It’s also likely that she has no idea how I’m feeling either. I don’t have these dark thoughts, purely because I fight every second of the day to keep positive thoughts in my head. This daily fight means that I am an inept listener, too casual a family man, impotent at work and have a mind a million miles away every single second of the day. Hayley’s dark outlook means that she is consistently short with me; but again I just have to ignore it and carry on as I try to offer that stable backbone to the family. Sometimes I feel like I could just crumble into a heap and never get up and this weekend is one of those times. I won’t, I’ll carry on tomorrow morning as I normally do, with the family, with the weight of the world on my shoulders. Hayley has said she resents me for being able to deal with it, and I guess I would much prefer to be in my place than Hayley’s, but this is not a normal place to be.

As I type this, Camille has been sick in her bed and I’ve carried her through to our bedroom. She is yet to have any feed tonight and now we have the decision of when to put her feed on, because we have to.