Mar 8 2011

This is the week that we finally got Camille started with the long awaited Proton Therapy, the week that we have been building towards since Mr Mallucci came out of the operating theatre in mid-October and said that she wouldn’t need the third surgery that was originally planned. Well, as we all know, things haven’t run as smoothly as we would have liked and the third operation did end up taking place in an impromptu manner; nevertheless, we’ve made it, finally.


Having been out in Jacksonville during January and for a week and a half prior to treatment starting, we felt fairly comfortable with the surroundings of Jacksonville, the Proton Center and the team based there. The process of receiving Proton Therapy for a child is pretty regimented and fairly simple. We get a timetable for the week with an arrival time; Camille is not allowed to eat for six hours prior to arrival time and drink for three. When we arrive after our twenty minute drive from our bug free apartment we scan Camille’s barcode to sign her in and then head straight back to the paediatric recovery room. We wait in there for a few minutes before Camille is called through; the anaesthetist comes in and takes her through, normally carried by Hayley instead of on the bed. Lucia and I head back to the main waiting area where we grab a drink and Hayley joins us within seconds; Camille is now under anaesthetic. While Camille is receiving treatment, we have an hour or so where we spend time doing Lucia’s schoolwork. Hayley tackles the reading and writing and I tackle the numeracy side of things. She’s doing really well, as long as she can keep her concentration, she does tend to get bored very easily.


After an hour, I get a phone call from either Kendra or Gina in the recovery room and we all skip back through to see Camille. She’s still asleep when we get there but within minutes she wakes up and we are free to go.


We had a bit of a blow the day before we started when we found out that Camille’s time slots were scheduled for early afternoon. We had hoped that Camille would be early in the schedule so that she wouldn’t have too long to go without food. It actually turned out that Camille was really pretty good with the six hour fast, the tantrums we feared never materialised and the daily routine ran like clockwork. Camille may not say that though, as the later in the week we got, the later in the morning she began to wake and therefore the less time we had to get her balanced diet of Cadbury’s Chocolate Buttons and Milky Way Stars into her. Camille with ten minutes before lockdown would be sat on the sofa with her cheeks bulging with the chocolate treats.


It’s strange, as the week ended, so did Camille’s appetite and with that, her mood sank dramatically. Saturday was not good at all; Camille was now refusing all food and without her NG tube in to feed her through her nose we had no other means to get feed into her. At the same time she began to be sick, not a lot but it was significant as vomiting and lethargy (that also presented itself that afternoon) are major signs that her shunt is blocked. We went to the Cheesecake Factory for lunch and Camille for the second time in a fortnight fell asleep on Hayley whilst the rest of us battled through the inch thick menu. This behaviour carried through the weekend; even when we visited the wonderful Hanna Park on Sunday with the glorious sandy beach and pedal boats on the alligator infested lake, there was just screams and unhappiness from our little girl. There were also grumbles from me as we boarded the pedal boat only to be left as the sole peddler. My first plan was to conserve energy by heading with the flow; however, at some point we had to head back against the flow and by that point I was shattered. I pedalled as hard as my legs could manage and I think we moved ten yards in ten minutes, Hayley laughing heartily and Lucia screaming at us both because she was scared of the alligators. We didn’t see one, but we were assured that they live there and it was a little eerie floating without any great power in the middle of the lake. We had a life jacket on each, but I think I would have preferred chainmail.


We made the decision on Sunday night to take Camille for a CT scan to ensure the shunt wasn’t blocked. The first thing I did this morning was to phone Amy at the Proton Therapy Center who agreed with us and arranged for us to go to the Wolfson Children’s Hospital. I’m beginning to dislike old Wolfy Wolfson. The endless corridors, the lack of windows and the never ending waiting areas really bring you down. We had to take Camille to the ER as this would be the only way to get her looked at this week and as we went through triage, the nurse started trying to give us her opinion on Ependymoma brain tumours. It was very nice of her I’m sure, but nevertheless, we only like to hear opinions from people who actually know what they’re talking about. When you are in this situation, you are very clear that you don’t want to have people’s opinions thrust upon you, just don’t.


We waited for what seemed like hours and were told that she would have an x-ray to make sure the plumbing was operating properly and then a CT scan to ensure the ventricles were not swollen. Hayley made a good point later on; why would you bother checking the mechanism first if you are just about to find out that the thing is working anyway? Perhaps the assumption that the hospital may throw in extra procedures to reap the benefits from the insurance companies is actually correct. It didn’t help that the woman in x-ray was like a farmer, positioning Camille will little care or little grace. Camille was screaming throughout and Hayley put it down as the worst experience for Camille out of anything she has had done in the last two years. Straight afterwards she went in for a CT scan; they know how to kick them when they are down. The good news is that the shunt works fine. That does leave us a little perplexed as to why the nausea and lethargy has come on all of a sudden, but at least it is not the one thing we were dreading the most.


This week we also saw on the internet that Sarah Brown has released her book Behind the Black Door, the diary of her time in Downing Street. Knowing it was a diary I asked my mother if she would take a look at the date when we visited Downing Street in 2009. Mother went out and purchased a copy (available at all good book stores). Sure enough, Sarah mentioned our visit, talking about us all and how she felt about our time with her. We all feel so incredibly touched that not only did Sarah remember us enough to put our visit in her book, but also that the Editor didn’t wonder who those no marks are and strike us out!


We also had some more good news this week; a lady named Sarah Evans applied to Vodaphone World of Difference for a grant to be able to work for Camille’s Appeal. There are 11,000 people apply and Vodaphone pay for 500 of those to work for two months for a charity that the nominee applies for. Firstly, we’d like to thank Sarah for thinking of us in her application but also to Vodaphone for offering such a vast amount of money to charities like ours; it will make such a big difference.


In addition, we'd also like to welcome the wonderful Sarah Richards for also offering to join Camille's Appeal and help support some of our events. Sarah is already forging forward and we are extremely grateful for her help.