Did he? I thought I heard...Hey?

Oct 18 2009

I'm learning fast not to underestimate the chances of new pieces of news coming our way. Monday was our opportunity to ask both Mr Garnett and Amos any questions we had about the current position....

I'm learning fast not to underestimate the chances of new pieces of news coming our way. Monday was our opportunity to ask both Mr Garnett and Amos any questions we had about the current position and the Neurosurgery element of Camille's treatment.

On arrival at Addenbrookes we had a quick meeting with a Neurology Specialist to go through the video footage of Camille's night terrors. Fortunately she was pretty convinced that Camille's episodes were nothing to worry about and that she is just experiencing really vivid dreams. It turns out that since we left hospital last Sunday, her episodes have been minimal. It seems to be worse when she is in hospital, I still think it's because she doesn't get into a deep sleep there and perhaps not as comfortable.

After a quick coffee we sat in the PDU waiting area for the consultants and our specialist nurses to call us through. I felt really nervous when I saw Mr Garnett walk out from one of the rooms and as we sat there for a few minutes more my heart rate began to race. I know Hayley was experiencing similar feelings, and when Harry came to usher us in to the room, we were about to collapse. The chairs were lined up; one for Hayley and I, with a third enabling Harry to sit with Hayley and the Addenbrookes team scattered around in front of us. The situation was uncomfortable, and when we were asked what we hoped for from the meeting, the answer of half sentences and vaguely contextual words probably indicated that this wasn't going to be a jovial chat. Hayley and I had planned some questions that we wanted covering and we proceeded to ask them in a haphazard way. One of my questions was "Are we 100% sure that the tumour has not invaded the brain stem?". It has been our understanding that although unsure, Camille's function levels were enough for us to assume that the tumour was only pressing against the brain stem. Mr Garnett , answered the question in the way that I had expected and I took my guard down, "Well it's difficult, we won't really know until we go in, but the answer is No". I looked up and couldn't work out what he meant, however, he soon clarified that the scans do and always have indicated that the tumour does seem to be in the brain stem.

You can imagine that this news was a massive shock to both of us and for the rest of this week it is all we can think about. Hayley is now looking at Camille's every move looking for symptoms that the brain stem has been invaded. In truth, many of the symptoms listed have been present for some time, which goes further in stoking our fear. The problem with brain stem invasion means that the surgery element of treatment becomes more tricky than it would be normally and full resection becomes risky. Mr Garnett still reinforced the point that it will only be known once she is in surgery and also, we have a lot of Chemotherapy between now and when surgery has to occur, so a lot of shrinkage and movement could change the way we view the scan images.

A few other things that came out of the meeting were that Mr Garnett's optimum time for operating would be when there is some shrinkage of the tumour, when she has had a chance to grow a bit and therefore a little older. This means that the end of the year long Chemotherapy protocol looks like the best time assuming the Chemotherapy is still tackling the tumour. He also mentioned that an operation now would likely end up with Camille in a Children's Hospice for the rest of her life on a ventilator and being fed through a tube in her stomach; an image that I try desperately to block out of my mind, and although I can picture a scene, I do not see the child's face and therefore I'm able to box that thought as it not being an outcome for Camille.

This week has been difficult for other reasons. Camille's dependence on Hayley has grown over the last few weeks and now she goes wild at the slightest idea that I may try and do something for her. This has major issues for all of us, Hayley is constantly on call, and frustrated that I can't do as much as I could, when I try to play hardball with Camille, Hayley gets upset and annoyed with me for getting her worked up and Lucia can't understand why Camille gets everything she asks for while she has to work hard for it. It's a complication that is really playing on my mind, there doesn't seem to be a happy medium. Camille is now waking up in the night demanding for her mummy to lay with her, and it tends to be me in the night trying to get her back off, even though she really doesn't want me there. The easiest way to combat this is to carry her into our bed, but this has the potential of becoming a big issue. Lucia is also in our bed by the time the sunrises, this too makes the whole thing even more complicated, I think I could be doing a lot of bed shifting tonight.

On the topic of the Three Peaks Challenge, we are now only two weeks away from the climb and I am beginning to panic, especially due to my eating issues continuing to require extra notches in my forever stretching belt. I have bitten the bullet and joined a gym, and I have now been a few times since induction. I just now need to work out how many calories I need to burn off to counter balance my comfort food binges. I'll need to be honest with myself, earlier I polished off a Big Mac in double quick time and because Camille didn't want her happy meal, I managed to scoff that bad boy as well before she had time to say "Don't want it". Cardiovascular is the menu of the day, but I can't deny that I had to give my pectorals a little coming over yesterday, the temptation of trying to firm up my saggy breasts was a step too far.