An update

Jan 28 2013

It’s been some time since I last blogged about Camille and her progress post treatment; it seemed that back in May, updates were becoming more and more irregular and it was a good time to take a break. However, eight months is a long time and lots of significant events can take place, especially when trying to overcome the effects of a brain tumour.


It wasn’t long before the stresses began to show as we moved into the last week of the school year. This as you may remember was Camille’s first year at school and at that time we were really quite happy with how it had gone. Camille had also enjoyed herself and looked forward to going in every day. With just a day or two left before the summer break Camille acquired a limp or a better description would be that her gait became very strange all of a sudden. There seemed no reason for it and immediately Hayley’s mind turned to the possibility of a reoccurrence. I personally wanted to find another cause, I wanted to look at what else was going on, but I have to admit that other symptoms were few and far between.


The weekend arrived and our calls and trips to hospitals had not resulted in any help diagnosing the issue at all. Addenbrooke’s had gone through a questionnaire over the phone and based upon Hayley’s answers had flatly refused an MRI to know for sure. I could see how upset Hayley was and Camille by this point was really hobbling around so I thought we could try to get Ipswich Hospital to scan Camille. I took her into the children’s ward on the Saturday morning and it was no surprise that we ended up spending most of the weekend there. During that time they wanted to take bloods to test for infections and proceeded to canulate Camille. You probably remember that Camille’s veins have been shrunk to nothing by the chemotherapy she endured so the torment of having her hands and feet pricked endless times ended in a disaster. The cannula was fitted into her foot for just forty-eight hours and that was the last time she walked for months. In fact, that was the last time she put any weight on her legs for months.


Ipswich wouldn’t scan without the permission from Addenbrooke’s and on the Monday we ended up going to Cambridge to see Amos, for him to try and settle our nerves about the possible reoccurrence. Amos looked Camille over and she was particularly difficult on this occasion, screaming and crying as much as I have ever known. You could sense that Amos believed it to be nothing, or possibly just behavioural issues; he put it down to irritable hip which pacified us for a short time. The summer holiday came and went and while I was at work, Hayley was dealing with a six month old baby, a child who couldn’t put any weight on their feet and a child with boundless energy. Looking back I have no idea how she got through those six weeks.


It wasn’t until the week before the new school year started that Camille finally got scanned. That was also a complete mess. Ipswich Hospital were tasked with getting a scan of head and spine to cover all angles and after the MRI machine went down on the Monday, it was left for a Tuesday morning scan. I had a work engagement in London that afternoon so we managed to push for an early scan but with the sedation not working, the minute hand was ticking uncomfortably forward with no sign of slowing down. I always go in to the MRI suite as Hayley feels that she is bad luck following Camille’s diagnosis scan but as Camille was wheeled in she woke up. Hayley took over and went in with her, Camille semi-awake with a forty-five minute scan to try to get through. I waited in the most depressing waiting area I have ever seen; it was essentially a corridor with a couple of seats and magazines sporting the engagement of Katie and Peter.


The scan was clear, the doctor was lined up to go straight in and give a view and that was that. We never did find out what was wrong with her; her infection marker was high for the majority of the summer, she screamed with pain behind the backs of her knees and she was generally very uncomfortable. Over time, she started to do some more bits; crawling to begin with, standing up against the sofa and finally taking a few steps. She’s still walking now, but only very short distances really. She gets extremely tired and most of the time she rides the Buggy Board or even sits in Jude’s tripper.


That scan wasn’t the only scan since I last blogged. We travelled to Addenbrooke’s just a couple of weeks ago for her next four monthly MRI. The sedation didn’t even touch her this time so the brave little girl laid in the MRI tunnel for forty-five minutes with a mask over her face gripping tightly to Daddy’s hand while she went through the process of capturing both head and spine once more.


The following weekend went slowly but we knew that we wouldn’t get the results until the Monday. The team at Addenbrooke’s had their big multi-disciplinary meeting that lunchtime and we had been told that we would get news that afternoon. I got back from London mid-afternoon and waited. We waited and waited until dinner time arrived. Hayley happened to be looking on Facebook when the news came through that another young lad who had his scan directly after Camille had found out his results some time earlier that afternoon. The doubt began to bubble in Hayley and for once I wasn’t far behind her. Why wouldn’t they call? Hayley’s first thought was that they were waiting for a consultant to call us; I didn’t tell Hayley but I was envisaging Addenbrooke’s trying to speak to Mr Mallucci before breaking the bad news to us. In that circumstance the tension is unbearable, I couldn’t think of anything else, I had no idea what to say to Hayley, I was a useless mess. I sat upstairs when the phone rang at about 8.45pm; I automatically expected it to be my parents wondering whether we had heard and with no offence meant, I really didn’t want to talk to anybody. I still answered the phone and a man’s voice said “Hi Martin, it’s Amos. How are you?” I reeled off a number of words that expressed the way I was feeling and he just said “you don’t need to be, it’s fine, it hasn’t changed”. The relief was immense; I wandered down stairs and just gave Hayley a thumbs up while I tied up the call with Amos.


So, we’re now pushing two years since treatment ceased. This is great news and although we have a long way to go before we can be confident of the tumour never returning, two years is a major milestone in the survival process. Dr Danny always says “I have to tell you, I feel more confident as the months go by”. Two years also seems to be a good time to reflect on the complications Camille has experienced since treatment finished. Schooling has become more of a challenge. Camille’s concentration levels are limited and teaching her to read and write is a massive challenge to her teachers and teaching assistance at school. It’s funny, but an App on the iPad donated by the wonderful Mason’s Magic may be the key to capturing and maintaining her focus. We shall see.


We’ve already talked about Camille’s physical challenges, but they stretch further than her legs. Camille’s hearing has dramatically worsened in the last two months or so. She is now so hard of hearing that you have to project very clearly face to face for her to hear you; this of course cause additional challenges to her school work as well. An appointment is imminent for a hearing aid to be fitted, I am really hoping that this makes a difference. Losing her ability to hear in one ear (which is what the case is), may seem dramatic to everybody, but it was a risk we had to take when deciding with Dr Danny in Jacksonville how aggressively we would attack the tumour bed. It was a very definite probability that Camille would lose the hearing on her right side, so this news came as no shock to Hayley and I.


We also then have the continuing saga of Camille’s appetite. That’s right, she hasn’t got one. Camille never seems to feel hungry and every meal time, whether that be breakfast, lunch or dinner is met with our little girl trying any tactic not to have to eat. It’s become ridiculous, it’s a painstaking, deflating exercise that ends up with a very grumpy Camille and inevitably a very stressed Hayley, given that I’m rarely home from work in time to help. The school have flagged this up as an issue and have started to discipline her if she doesn’t eat enough. I’m all for this approach, she can eat perfectly well so all of this is behavioural. We are now on the cusp of getting child psychologist support which will hopefully start to unravel some of this stubbornness. I talk positively, but deep down, I know that this is as big a challenge as anyone will ever face, Camille is the most stubborn little girl I have ever met. She of course gets that from her Mother, I am an absolutely walk over.


All of this stuff is insignificant to the fact that Camille is still clear and we’ll deal with these issues the best we can.


So, that’s a brief synopsis of the last eight months; our little boy is now one, Lucia is reading ruddy novels and Hayley’s put me on the Slimming World diet. I won’t leave it this long before I blog again, I promise.