Having now been at home for a few days Camille has brightened up considerably in comparison the the lows of last week. The Chemotherapy drugs are now probably completely out of her system, and she seems to be enjoying herself a bit more.
For Hayley and I being at home is fantastic, but there is always the feeling that nothing is really happening, and how can the treatment be working if she is sitting on the sofa watching Peppa Pig and the like. We do understand how the process works and how the planed course of action looks, and although the delay for the new Hickman Line is only four days after the original date for the next course of Chemotherapy, it seems like a lifetime.
With all this time at home the mind can wander, and Hayley's mood is very much dependant on Camille. Hayley is generally a pessimist , but when Camille is feeling low, Hayley becomes the ultimate pessimist , and becomes very low and depressed herself. In fact, even now after three great days for Camille, Hayley is still having stages during the day (or night) where she is so low I have no idea what to do, or what to say. This is a huge concern for me. Even going back to that first night at Addenbrookes whilst I was laying in bed, I decided that I would need to be strong, not only for Camille, but for Hayley and Lucia as well. I needed and still need to be the positive one, the one who can look after the rest of the family. I fear with Hayley at the moment that I am completely lost; I am not sure I was blessed with the skills to deal with this situation, or have the ability to know what to say. In fact, I do know what Hayley needs and wants to hear, but I can't say it, truthfully and factually. Camille is on a treatment plan, a plan that I understand, and a plan that I can follow step by step over the entire course. Camille's plan enables me to break it down into digestible chunks, that can be analysed and emotionally controlled. With Hayley it is different, there is no plan, her feelings are unpredictable, I'm not being guided by experts.
Some of our concerns come from whether or not the Chemotherapy will work. We've got no guarantees at all, in fact we have no idea how she will react to Chemotherapy. With Radiotherapy not an option for Camille (without a degree of brain damage), there are real concerns that there doesn't seem to be a Plan B. We haven't asked the question, but from my understanding , Plan B is to cause Camille some degree of permanent damage. With all of this in mind, I have spent hours searching and sifting through the Internet , trying to find clinical trials, pioneering techniques that might apply to the type of Paediatric Tumour that Camille has. The Internet is filled with interesting information about new methods of treatment, of which I've made a list for discussion with our Consultant at Addenbrookes . We need to know that there are things out there that could help Camille, if Chemotherapy doesn't work we are not going to sit back and take the prognosis, I would fly to the end of the earth (Luton ) to find a treatment plan that works.
There have been some issues arise from my search; firstly, Camille's tumour is rare in general, but quite common in children under three. In the UK each year, there is only likely to be fifty so cases of this type of tumour, in the USA we're talking a couple of hundred at the most. Clinical Trials tend to be based on the more common tumours. Secondly, whilst researching the tumour, I have seen a lot of facts and figures, numbers I know that Hayley does not want to know. Again, it's a burden of knowing. Thankfully, the numbers were not worse than my expectation, that has to be seen as a positive.
Thinking Time
Aug 8 2009