Long Distance

Sep 5 2010

The days and months have passed since Camille was diagnosed and chemotherapy commenced; now, as we move towards the end of this phase of treatment, something inside of me is almost longing for the security of week on week hospital visits. As the bank holiday weekend ended, we used the short working week to travel to Liverpool.

Hayley and I have done a fair amount of research, me in the early days and Hayley ever since; looking for the competitive edge that will cure our daughter with the least amount of damage to her body in the long term. A number of months ago Hayley had come across the intra-operative MRI scanner at Alder Hey Children’s Hospital in Liverpool, the only one in Europe. We managed to find out a fair amount of information about the facility through the internet and television and from there we approached Amos and Mr Garnett at Addenbrooke’s to see whether surgery in Liverpool would be beneficial for Camille. Tuesday was our chance to meet the head neurosurgeon at Alder Hey, Mr Mallucci.


Our appointment in Liverpool was booked for 4.30pm, so we set-off mid-morning with Camille not really knowing whether Mr Mallucci would want to see her or not. The journey to Alder Hey is pretty much 250 miles on the money, so the journey was a long and arduous one. Camille was really good and didn’t make a fuss at all about the hours she was stuck in the car. We arrived in Liverpool with minutes to spare and made our way to the neurosciences department to sign in and await our meeting. The waiting room was empty apart from another couple and it wasn’t long before Mr Mallucci appeared. We waited for Mr Mallucci to see the other couple before we were ushered into an office. Mr Mallucci was extremely friendly and seemed pretty confident when talking about the operation. We went through lots of detail and he used the scans to show me how he would approach the operation. He was quick to mention that the intra-operative MRI scanner will not assist the actual resection itself but what it does do is to allow them to do a multiple staged operation in one visit as they can make better informed decisions there and then rather than sewing the patient back up and scanning the following day.


Mr Mallucci pointed out that 70% of the tumour is relatively low risk for resection, as it lies in areas away from the vital structures of the brain. He estimated that it would take approximately three hours to get this volume of resection as Phase One. At this stage, they would be likely to scan again before discussing the status with us and continuing into Phase Two. The second stage is the next 20% of tumour; this area is the mass that sits closer to the brain stem but not immediately adjacent or touching. This stage gets more serious as running off the brain stem and out into the brain are the central nerves that carry all of the messages and actions from the brain to the rest of the body and visa versa. Many of these nerves, if accidentally cut, would have a minor effect on Camille, but in one particular area, there are some major nerves that could cause a considerable long term affect on Camille’s life. The final 10% is the extremely risky stage as it will be the tumour that is wrapped around the brain stem, the source of all life into the brain, the blood source.


Mr Mallucci backed up much of what Mr Garnett has explained to us over the past year and although he didn’t really give us any new information, he seemed fairly confident about the surgery. Everything depends on what it is like when he gets into the skull; the tumour may simply peel away from the vitals structures of the brain or it could be more “sticky”. Either way, on the day of the surgery we are going to have some tough decisions to make under the guidance of Mr Mallucci and hopefully Mr Garnett. We always wanted Mr Garnett to travel up to Liverpool to work with Mr Mallucci on the operation and depending on diaries, we may get our wish.


So the plan was to stop chemotherapy immediately and to book a date for the operation. As this week was her last of her current cycle, Hayley continued to take Camille into Addenbrooke’s until the end of the week, which is now complete. The operation is going to take place at the end of the month. Whilst in Addenbrooke’s on Wednesday, Hayley had an opportunity to speak with Amos about our visit and I think wished she hadn’t. Amos explained to Hayley that if we did try to get the last 20% out, it would come at a cost, a major cost to Camille. This creates a huge problem for us for many reasons; firstly, the proton therapy treatment depends on a full resection, any residual tumour would put pay to that. Getting a full resection also puts Camille’s long term survival into a completely different category. Children who receive radiotherapy after a full resection go from a 50% survival rate up to 85%, something we can’t ignore. We don’t need to do it all in the one operation, we could go back to the operating theatre at a later date, but at some point we are probably going to need to go into the last 20% to make radiotherapy possible.


The conversation with Amos hit Hayley quite hard I think and although I am very aware that Hayley picks up on the worst elements to these conversations more than the positives, there is no question that these risks are a reality and we are weeks away from realising them. The rest of the week has been extremely difficult; every time I look at Camille I want to cry. She is so happy at the moment, so well in herself and to think that we, her own parents, could be sending her into an operation that completely changes her for the rest of her life. I want to hold onto this Camille forever, I never want to let her go, but I know we have no option but to take certain risks. Her survival is the ultimate priority and we must remember that. I’ve driven a lot of miles since going to Liverpool, driving alone allows all my worst thoughts to work through my brain; I am dreading the next few weeks, I don’t know how to look at Camille, I don’t know how to help Hayley.


From the very beginning I have tried to be the positive, strong one to help all of us get through it, but inside I hurt and I don’t know what to think or what to do. That’s why I’ve never been any help to Hayley, because I am just as scared and confused as she is. Chemotherapy, as horrible as it is for Camille, has given me a sense of security, knowing she is getting better slowly but surely. Surgery changes all of that.


With all of this going on we probably didn’t make enough of Lucia’s first ever day at big school. I was so proud of her on Thursday morning as she got dressed into her school uniform and paraded around the kitchen like the cat that got the cream. We all went to the school to see her go in with her classmates. She too was proud I think and as she walked single file towards the classroom she didn’t need to look back for comfort or encouragement, she was brilliant. True to form, Lucia is now two days down and already well at home. I hope the teachers know what they have let themselves in for.


We have a meeting with Amos this week; he’s been our rock throughout the last fifteen months and we desperately need him now.