Hayley had spoken with Amos briefly last week and many items were raised that we should be aware of, but today’s meeting was planned, we had chance to think of questions for him and to totally understand what surgery means for Camille and how we should approach it.
The leading question is always how far we risk going with surgery with the severe risk of disabling Camille the further the neurosurgeons go in. We discussed many lines of possibility starting with leaving 20% of tumour and following on with standard radiotherapy through to taking the whole thing out and irradiating the area afterwards using proton therapy. All of these questions lead to one central question for us as parents; is the most important outcome from Camille’s treatment her long term survival. The answer to that question is and always was 100% “yes”. So what price do we have to pay to get there?
If the surgeons did leave some tumour behind, we could go on to standard radiotherapy in the UK, with proton therapy then not being an option. The radiotherapy may well clear the remaining tumour but it would leave two problems: firstly, the area being irradiated would be quite large and in a child of Camille’s age, it would leave the area of healthy brain it touches as mush, disabling Camille in many possible ways. The second most significant issue is that it leaves a high rate of reoccurrence, which is then harder to treat. The survival rate over three years for this outcome is approximately 50%; Camille would only have half a chance making the age of six. You can’t imagine tossing a coin to see whether your child would make the age of six, it’s an outcome and a chance that we cannot live with.
There is no middle ground; we either get it all out through surgery or we don’t. If Camille was fully resected and given proton therapy then her chance of survival over three years increases to 85% with a good chance of long term survival. This is the only option that we have for Camille, we are not focusing on her being here in a year’s time; we want her here in twenty years time. So, that leaves us with the difficult reality of how this is going to be achieved. This means that the surgeons are going to have to go into areas of the brain that are riddled with millimetre sized nerves with the high risk of them being cut or damaged resulting in disabilities from paralysis, inability to breath for herself and being unable to swallow or speak. We need to face these realities now, as not going into these areas and taking out all of the tumour, will leave us with little or no hope having Camille with us for more than a couple of years.
It’s impossible for people to understand; the majority of people we have spoken to cannot perceive how serious this is. Most believe that the surgeons are just giving us the worst case scenario, but this is already the worst case scenario and we now know that Camille will not wake up the same girl that goes into surgery. We can dream of her coming out of the operation with some areas of weakness down one side or similar, but we have to face the reality that this would be the best case scenario.
In three weeks we are going to send our daughter into surgery, having authorised the operation, knowing that this will be the last time we see Camille in her current state. Since having had this conversation with Amos, I’ve felt really weak and I just want to collapse and stay lying on the floor, but I can’t. I feel drained of all energy, I feel sick. I look at Camille and want to cry forever. Whilst driving home from the hospital, Hayley and I were quiet in the car and my mind ran away to the moment we have to go with her for the pre-operation anaesthetic. How do you say goodbye to your daughter in a room with strangers “just doing their jobs”, surrounded by implements, machines and white walls. These thoughts broke me in half; these thoughts will haunt me to that day and beyond.
We picked Camille up from my parent’s house on the way home and she was so happy, so bright, and so lovely. I have no words to explain what I’m feeling. If I’m feeling this useless and weak, I can only imagine how painful this must be for Hayley. Over the last fifteen months, Hayley has put all of her energy, emotions and dedication into Camille and getting her better; I can’t help her get through this, I have nothing to say that will help her, I have nothing I can do to ease the pain.
When it comes to faith, I struggle to place my faith in a higher body; I have no faith in something that could leave my daughter with her only chance of survival costing her the freedom and basic abilities that we all take for granted. My faith is going on the surgeons who will be in the operating theatre on that day; Mr Mallucci and Mr Garnett will be our gods, they will be the power and the glory that we dream of celebrating, they will be the masters of our future. Wish them your very best; pray to them the careful delivery of our daughter, free from cancer and happy and able.