Oh Toodles!

Mar 28 2010

On Monday afternoon, Hayley and I made the visit by ourselves to Addenbrooke's to have our meeting with Amos and Mr Garnett to discuss the scan results that we'd had an indication of two weeks before.

Harry, our specialist neuro-oncology nurse rearranged out appointment so that we went last and therefore had no time pressures (except hunger pains). When we got called in I went in first; Hayley is yet to see any of Camille's scans, so I went in alone so that Mr Garnett could show me the results. The reduction that we had heard about was evident at a glance, and as we went through a number of views showing the last scan as a comparative, I really couldn't believe how much it actually had shrunk. Mr Garnett did not want to offer a percentage of the reduction but I estimated it was in the region of 20-30%. Hayley joined Amos, Mr Garnett, Harry and myself and we continued the discussion. The actual reduction at this stage has not really changed the situation as Mr Garnett still feels that it would take two major operations to get 75% of the tumour out. Mr Garnett does feel that it is unlikely that he will ever be able to get the whole tumour out through surgery and other methods would have to be used to clear the remnants. The goal now for us is to get over and above the 90% figure for tumour resection. The plan now going forward will be another one or two cycles of chemotherapy to see if any further reduction improves the possible resection amount. At some point in the next couple of months, we expect Camille to undergo at least one operation to debaulk as much of the tumour as possible. After that operation there will likely be more rounds of chemotherapy and potentially further operations. Camille will continue to have chemotherapy until it no longer works; that could be a few months, or a year or possibly even longer. At that point, we will then need to go down the route of Radiotherapy.


Ever since the beginning, when Hayley and I researched all of the possible progressive treatments out there, the one that stood out above the rest was Proton Therapy. Proton Therapy is a version of radiotherapy that saves the healthy tissue of the brain; standard radiotherapy can be very damaging to the human brains, and especially the brains of children. Hayley and I were pleased to hear both Amos and Mr Garnett suggest that Camille met the criteria for sending us to the US to undergo Proton Therapy, and that this would be the next stage once the chemotherapy has served it's purpose.


All of the information that we received in that meeting sank in relatively easily, our understanding of the situation has become pretty good over the months. It was a surprise and a knock to our confidence finding out that we are unlikely to ever have a full resection, but the positive feeling towards Proton Therapy helps us balance that out a little. It was also a eye opener about the surgery that she is going to have in the next few months. We learnt that Mr Garnett's team will drill a hole in her skull the size of a ten pence piece and then cut a much larger circle of skull which will be lifted out. When they have finished the operation, they will place the removed skull back and fill in the hole with the shavings drilled out in the outset. The thought of our little girl having to go through this terrifies us, Hayley is constantly dreaming of the moment we take her up to the theatres, the moment she goes under, the moment we have to walk out and then the moment we go into recovery after the operation has been completed.


We were pretty quiet on the way home from the hospital, weighing up the positives against the words of caution from Mr Garnett. I am very clear and what will happen now and where each treatment sits in our future.


The fears of surgery and the outlook of Mr Garnett were laying heavy on Hayley's mind as we moved in Tuesday. That evening we were again invited to 10 Downing Street, this time for an event about beating cancer in this generation. We arrived in London early enough to get a bite to eat in Soho and then we popped to Hamley's to get the girls a little present from our visit to the “big smoke”. Hamley's was not as impressive as I thought it would be. I had visions of playing the floor piano like Tom Hanks in Big but actually it was just like a high street version of Toys R Us. We did however stumble across a little gem; an alarm clock that plays a personalised song with the girls names in it (although Lucia was pronounced Loo-See-Ah rather than Loo-Chi-Ah). We jumped in a cab and headed for the home of UK democracy, Hamley's bag in tow. As we arrived a number of people were heading in, one of which was John Hartson the footballer who has recently been battling a brain tumour. John had just gone through the security when I looked at the scanner, followed by my Hamley's bag. A sudden fear came over me that I was about to let the Prime Minister's security scan an object in the shape of an alarm clock. Luckily they had a good sense of humour about it, and coupled with a lack of explosives we were free to go on into the street and down to the building. On this occasion, the door was already open for John and a few others so I missed the opportunity to knock for a second time. We were shown up to the state rooms where we stood and looked a little uncomfortable for a good period of time. At one point Hartson stood in front of us alone looking in our general direction, Hayley nudged me forward and said loudly “Go on, you know you want to”, so I stepped forward like a lamb to the slaughter; docile grin across my face, hand poised to reach out for a greeting shake. No sooner had the heel of my right foot touched the carpet when John anticipated my move, turned and walked to a window overlooking Horse Guard's Parade. My morale was hurt so when the room began to fill up I kept myself to myself, even turning down the opportunity of a meet and greet with Denise Van Outen (who is pretty hot in real life, even with the eight month baby bump) and Nicola Roberts of Girls Aloud.


Hayley and I were approached by a number of other guests during the early stages of the evening, all of whom were consistent in their conversation: Ask a few questions, realise we were not that important to them, scout the room for a replacement, introduce their unlucky victim to us and then run for the hills. After the third or fourth party goer had made their excuses to find someone else to talk to, we happened to see one of the cabinet walk out of a room across the hall. He was swiftly followed by Alistair Campbell and then by Gordon Brown himself. It was slightly surreal to see the Prime Minister in his own natural habitat. It was like seeing a White Rhino on the plains of the Serengeti. Soon after the image of Gordon had begun to fade in our memories, our favourite political aide Kirsty brought Sarah Brown and the Health Secretary Andy Burnham round to see us first of all the guests. In my nervous state I began to gabble the biggest load of rubbish you would have ever heard whilst Hayley swooned over the dish of a man that is Andy Burnham. We have since seen the photos of this moment and Sarah Brown looks like she is hoping I get taken out by a sniper just to shut me up.


Later in the evening Andy Burnham walked past a doorway near where we were standing. I politely smiled in acknowledgement and to my surprised he gave me a “toodles” style wave; it wasn't until I noticed in my peripheral vision, Hayley also waggling her fingers giving Andy her own version of “toodles”. Man, did I feel stupid and ironically I was the only one not partaking in the rather ridiculous looking “Oh Toooooodddddllllleeeeesssss”.


We caught the 9.00pm train home and on the way back I noticed Hayley sniffling a little beside me. The train was busy and I didn't think that she would want to get into a discussion about whatever was upsetting her on the train so I simply put my hand on her knee. When we arrived back, it was clear that Hayley did not feel that this was enough and she later admitted that my lack of emotion frustrates her and she pretty much resents me for it. She also admitted that she no longer feels that she can cry in front of me and now finds opportunities by herself to cry as I and no one else give her the outlet to talk through her darkest feelings. It is true that I really have no idea what to do for Hayley when she is upset, there is nothing I can say or do to make her feel better, I am at a loss and that makes me feel awful.


The week was compounded when on Wednesday Camille's bum became so sore from the dirty nappies that Hayley took her to hospital, who in turn kept her in for the night. Her bum and front bum were so sore that she was in a great deal of discomfort and was serious enough for the doctor to put her on antibiotics. We did get out the next morning, but nevertheless, this did not help Hayley's morale at all. We've basically now had to re-potty train Camille which she has dealt with quite well. In many ways, it may end up being a positive thing for her if we can now get her out of nappies.


Today we took the girls to one of Hayley's friend's Easter egg hunt. The girls loved it and really seemed to enjoy just being outdoors. It is lovely seeing Camille playing again, it was such a long time seeing her so quiet and so sullen, it used to break my heart every time. They came home with their little basket of chocolate eggs, Camille is now hugging them in bed, Lucia's didn't make it out of the car.


Hayley this week attended Holly's funeral. She did say that it was quite an uplifting day and very reflective of Holly. It's quite interesting how our girls see death at the moment. When Sophie Atay passed away a couple of weeks ago, Hayley and the girls let some balloons go in the back garden in her memory. Now, if you mention somebody that has died to Camille she simply says “she's got her balloon now”. What a beautiful and innocent image.