Deja Vu

Oct 17 2010

After the remarkable improvement that Camille had experienced last week we were pretty free to do what we wanted during this week. With the second of three operations scheduled for Thursday we wanted to get out of the hospital as much as possible knowing that the days following surgery were going to be tough for Camille exactly as they were two weeks prior.

Once again we had loads of visitors and conceding that we are well over two hundred miles from home we have been extremely lucky. It’s probably a good thing; I think if we had endured the last two weeks completely alone as the three of us we would have been nursing some serious flesh wounds. The truth is I am pretty patient and don’t get too wound up with the day to day hospital lifestyle, but Hayley is a completely different animal, somewhere between a Jack Russell and a Viper. I’ve found that sometimes my chair squeaking in an inconsiderate fashion winds her up so tightly she loses circulation of the extremities. Camille’s not much better, by simply placing my head in a position that screws with her Feng Shui; she can scream the building down. At 9.00pm each evening I scuttle across to McDonald House glad that I have an hour of annoying nobody before bedtime. I’ve even begun to notice the nurses mumbling things as I walk past them; Hayley says I wrinkle my brow in an annoying way when I speak to them, perhaps it’s the brow?


My cousin and his fiancée came over for two days midweek which was great for Camille as she adores them both and she was also able to go wedding dress shopping which all girly girls enjoy. Whilst the girls were off perusing the boutiques of Liverpool, my cousin and I wandered aimlessly searching for a barbers where I could have a trim of my unruly do. Google Maps sent me in the direction of China Town and after walking for at least a mile we came across this trendy little salon that looked quiet enough for me to slip in unnoticed. I was given options, “would like a stylist or director?” When I answered “I want a trim” I got nothing but confused looks from the bank of urchins behind the reception desk. So my cousin set himself up with the July copy of Cosmopolitan in the window and I was ushered to the sinks at the back for a wash prior to the “trim”. The salon assistant triple shampooed my hair before sitting me down in the salon chair. This is the opportunity they chose to show me the price list; it’s not like I could say “sorry, I did enjoy the lathering and rinsing but I would prefer to leave for somewhere cheaper”. I was stuck, stuck in a gown that emblazoned their overpriced crest, so rather than make a scene and walk, I bit my lip and thought about how best to avoid tedious conversation with the girl cutting, sorry styling my hair. It must be a new thing in Liverpool to say “are you feeling?” instead of “do you like?” As the stylist finished, she kept asking me whether I was feeling the back of my head or feeling the length; all I could feel was the dirty great hole being burnt in my wallet.


We also had Hayley’s uncle, his wife and Hayley’s cousin visit us last week. This was quite a major event as Hayley has not seen any of them for about thirty years. Hayley was just a child when they last saw each other so you could almost start with a blank canvas and build a relationship from scratch. Both Hayley and I thoroughly enjoyed their visit and look forward to seeing them all again.


The hard and fast reality was once again brought upon us on Thursday as Camille was carried by Hayley down to the operating theatre for her second operation. Hayley and I were a little more relaxed on this occasion, probably down to the result of the last operation and Mr Mallucci’s confidence and positive nature. The hardest thing came from Camille; as we walked down the corridor Camille began crying and screaming “I don’t want an operation today Mummy!” It was horrible, the poor little thing was terrified, and terrified of the pain and the horrible affects that brain surgery has on a little girl. What do you do? What can you say?


We only expected the operation to last a few hours so when we got a call at 1.30pm from the theatre just to say everything was going well and that he had done stage one of the operation, everything was as expected. We didn’t really appreciate what stage one actually was or more the point, what stage two would entail until later on that day. Steve the theatre manager suggested that they would be another couple of hours before they could scan her which would be the next time we received a call. 3.30pm arrived and past, as did 4.30pm. It was 5.30pm before we received another call to say it was still going well and not to worry. Hayley and I had been shut up in our room in McDonald House all day waiting and thinking about Camille, so at 7.00pm we decided that we would walk over to the hospital and make our way up to the ward to see if they could find out what was going on. As we walked into the ward, the sister grabbed us and said perfect timing; we were led to the High Dependency Unit where Mr Mallucci stood, in scrubs, having just left Camille in recovery. He led us to a quiet area where we had sat two weeks before waiting for the results. “We’ve got pretty much all of it out except for a small amount around the brain stem” was his initial brief summary; it seems that every time they tried to clear the last little bit around the brain stem, Camille’s heart rate would dip considerably and gave a stern enough warning not to risk the really aggressive approach. Mr Mallucci did follow on to say, “So I don’t think she’ll need the third operation”. I beg your pardon? It turns out that the area behind the eyes that was going to be stage three came away quite easily and although they were visually impaired whilst removing this section of tumour, they were able to follow an artery all the way up and resect the tumour from underneath; something he had not deemed possible before getting in there.


Hayley and I were dumbstruck and even now I can’t quite believe that a tumour the size of my fist in her little head has been removed to a mm thick film around the brain stem equating to approximately one cubic centimetre. We could hope that all of the blood supply to this remaining mass has been stopped so that it dies in its own time, but realistically Camille will require radiotherapy to clear that and all other rogue cells that could risk her tumour coming back; for this we are still looking at Proton Therapy, the more focused child friendly type of radiotherapy. I think both Hayley and I expect that the tumour will return one day, Ependymomas have a horrible trend of reoccurring; however, we know that it will not ever grow to the size it was in the future, and perhaps an absolute complete resection of the tumour will enable Camille to break the cycle of reoccurrence and live a cancer free life. You may think we are being too negative and we should be positive about the future. I think strangely we are positive; we know that a clear scan post radiotherapy does not mean that Camille is cured; it means she is free from cancer. By setting our expectations low for the first set of scans post radiotherapy, we will not be broken by a negative result and we will be able to battle once again for Camille.


For now, Camille rests again. Her right eye is back to being completely turned in to her nose, only time will tell if it completely straightens out. Her hormones levels may be OK for now and we have no idea how long it will be before she walks properly again. However, she is Camille, she is still the clever little girl she was two and a half weeks ago. She is still beautiful, loving and she still has the most infectious giggle I’ve ever heard. We cannot thank Mr Mallucci and Stefano (Mr Mallucci’s number two) enough, they have managed to save our little girl from being ruined; they have preserved Camille to be the best she can be.