Sitting On The Dock Of The Bay

Oct 10 2010

If there was such a thing as a licence to be a parent, the last week should be the test to see whether you were fit and proper to take on such an important role. Every conceivable emotion has been pushed upon Hayley and I; and as we settle into another week and another major brain operation, I feel we have matured once again, even more than we have been required to do over the last sixteen months.

As I typed the last blog Camille had spent long spells of the previous two days awake and at times in a serious amount of pain with only the morphine booster to dull the pain. The muscles at the back of the neck that Mr Mallucci had gone through are particularly painful and probably comparative to that of a caesarean scar. Camille did exceptionally well after the operation and after the doctors and nurses had got on top of the pain, she was able to make some major leaps to recovery. After just a day or two, her eyes began to function a lot better than they had post-operation on the Saturday when she first opened her eyes. Although they still display the squint of major brain surgery, they have already begun to straighten up and Camille herself has managed to train her eyes to focus and remain focused; only today whilst walking outside, she spotted a plane that took Hayley and I a lot longer to spot in the clear blue sky.


It took days for Camille to actually speak properly. It wasn’t that she couldn’t talk; I just don’t think she wanted to talk. She was knocked sideways by the operation and really just wanted to be quiet or probably cross with Hayley and I. The whole time that she was keeping her pledge of silence, she looked so blue, which made us feel so sad in return. It’s hard to know when you see your three year old like this how long this will last for and what the eventual outcome will be. I remember sitting in the playroom on Monday with Pat (the fabulous) play lady trying to entertain Camille. Camille sat on my lap looking still very fragile, very poorly and quiet like a mouse. Pat’s best endeavours to get her playing were in vain and we left the playroom with a basket of glitter and sticky bits and a distant hope that she may eventually find these crafts entertaining once more.


Something happened on Tuesday or Wednesday; something quite amazing. Camille picked up, and began to become the old Camille again. This wasn’t an instant transformation but the turnaround was a pretty remarkable experience. The sticky bits were soon flung across the room, the glitter soon scattered across the bed sheets and in every crevice that Camille had to offer. Camille’s voice came back and hasn’t stopped since with Hayley being kept awake until gone 10.00pm some nights listening to renditions of Alicia Dixon’s “The Boy Does Nothing” (not entirely my favoured choice of song for my little girl, but Snoop Dogg would be more worrying I guess).


Camille is fantastic and without the squinted eyes and the 6/7 inch scar on the back of her head she would look perfectly Camille. We have certainly got the impression that we are not the only ones who are surprised and enthralled by Camille’s progress. Mr Mallucci’s number two, Stefano, has been in every day on rounds to see how she is doing. It is fair to say that Stefano is left aghast by how well she is and he was in the operating theatre for the entirety of last Thursday. I know it’s too early to say as we have three major steps to take before Camille is given a clear scan, but what happened last Thursday was as close to a miracle as you are probably ever likely to see. As I’ve said before, I’m not religious in any way and in my mind this clearly wasn’t a miracle, but what it should be described as is the most brilliant surgical operation that most, if not all of us will ever have the experience of knowing about. Steve the theatre manager, Stefano and others who are a party to the operation have all made comments that end with a smile, an exhale through loose lips and a shake of the head. Mr Mallucci has also commented that Camille’s case and the operation last week was the hardest case they have had to tackle at Alder Hey hospital.


This week wasn’t all positives. On Wednesday we had the delight of meeting the Oncology Consultant here at Alder Hey. We’ve formed a great relationship with Amos over the last sixteen months and as we are up here for surgical reasons we saw no reason for a consultation with his equivalent here in Liverpool, but that is exactly what we got. Amos has always been honest but would deliver information to us in a way that was timely and careful so that we could digest the information and manage our emotions; this wasn’t the case on Wednesday. The consultant in Liverpool saw fit to deliver a prognosis that battered every hope and sinew of confidence we had managed to build over the last year and a half. He started by saying that he didn’t believe in statistics and then spent the next fifteen minutes divulging percentages that would apply to Camille. He believes that we should be looking at the low end of the range of possibilities (50-70% for a complete resection, 0-30% for an incomplete resection) for Camille as her tumour was so large. This doesn’t help or change anything for us as we are doing all we can to make sure she gets the optimum chance of survival and a happy life. Firstly, the difference between the median result and the low end is not a huge amount so why bother us with this information. The meeting was a disaster which left Hayley in tears for the remainder of the day. It does turn out that according to Mr Mallucci, this guy is the best and he is extremely thorough with each and every case that he is dealing with; this maybe so and we are happy to have his expertise on board, but maybe going forward we should have an improved bedside manner in future contacts.


We were lucky this week to have quite a few visitors. Firstly, my parents brought Lucia up for a few days so that she could spend some time with us and her sister. We had all missed her like mad. As I went out to meet them in the car park, she ran over and just stared at me laughing like she couldn’t believe it was really me. She looked a little nervous around Camille; probably thinking that she would hurt her is she was her normal boisterous self. On Saturday Hayley’s sister, her husband and Hayley’s mum came up to see us and take Lucia home and as they left our friends Elaine and Steve made the 200+ mile journey up to see us for the afternoon. It was great; as Camille is feeling a lot better and not dependant on drips or regular medicines we’ve been able to get into Liverpool a few times, going to the Liverpool One shopping centre, the Albert Dock and Pizza Express! It’s great to get Camille out to get a break from the same four walls. I have actually been really impressed with Liverpool. The city centre and Albert Dock areas are fantastic now and the regeneration project that has been applied to Liverpool is there for all to see. I would definitely recommend a weekend up here and I’m hoping to catch the Beatles museum before we head home.


Hayley is hammering me on my eating habits up here in Liverpool. We’ve been extremely lucky to have a family in the area that have been more than generous in bringing us meal upon meal to eat so that we are not reliant on the canteen. We’d never met any of them before we arrived last Wednesday but they are all friends and relatives of another Addenbrooke’s mum, Christine. We are really grateful and my rotund midriff is providing a raving review for the quality of the food and treats.


We remain in Liverpool for another week at least so that Mr Mallucci can finish what he started last Thursday. Two weeks on he will go back through the same passage to clear the remaining mass of tumour situated at the top of the brain stem. This in itself is of little to no risk to Camille neurologically, but it is very serious in that any mistake around the brain stem is a matter of life and death. I’m confident that Mr Mallucci will clear this away as well leaving the lump behind the eyes to tackle in a couple of months when Camille is fighting fit and ready for the next major operation.