Hakuna Matata

Jan 24 2011

It seems only appropriate that after missing my first week since I began writing the blog nearly two years ago, I should apologise. The reason is an honest one; as we had a week free in Florida we drove down to Orlando and visited Mickey Mouse and his friends in Orlando. You may be thinking that “they must have internet at Disney”. Well yes they do, but as Mickey Mouse stings you for every penny you have, I refused to pay the extortionate fees for our big-eared “pal” to switch the switch that connects me to the web. Now that I am free to breathe oxygen without fear of a bill, I’ll revisit the last two weeks using the power of sub-headings.

Treatment in Jacksonville


When I left you two weeks ago, we had arrived in Jacksonville and had just settled in at a hotel for a few days before we could find an apartment for the remainder of our stay. We had also met Dr Danny for our introductory meeting on the Monday.


The next few days were really hectic with appointments scheduled for every waking moment. On Tuesday we travelled to the Wolfson Hospital near St John’s River to meet the Neurosurgeon who would be operating on Camille the following day. The operation was extremely simple, so as Dr Heger sat there and asked for our questions on the task ahead, we struggled to find anything interesting to say. The silence was painful, probably more painful than the operation the following day.


The hospital was very well managed and as we brought Camille in the following day we felt well looked after. Hayley went in with Camille while she went down for the operation. They gave Camille some happy gas before she went down to the theatre in a boat shaped trolley. Apparently her reaction to the seafaring mode of transport was brilliant, especially as she resembled somebody four or five sheets to the wind. Dr Heger screwed four very small titanium markers into her skull so that when she lays under the Proton beam everyday, they will be able to exactly line her up with her position the previous day. This is essential as the beam acts like a knife and the margins of where they have to irradiate are miniscule.


The following day we were back at the Wolfson for the pre-treatment MRI scan. Hayley had been winding herself up for weeks that this was going to show that the tumour had grown back aggressively and we would not be able to have the Proton Therapy treatment. Our scan was at 8.00am and because Camille requires a general anaesthetic we needed to be there at 6.00am. Imagine that in the UK, if I walked into Addenbrooke’s at 6.00am, I would probably waiting outside for two hours before the (I should have been a cop) security guard unlocks the door. Anyway, we were again dealt with quickly, efficiently and before long we were out of there awaiting the results that would define our trip.


The results came the following day from Amy the co-ordinating nurse at the Proton Therapy Centre when she left a message saying that everything was good to go. On Thursday afternoon we also had to pop over to a third hospital, the specialist children’s hospital, Nemours, for a meet and greet with our oncology doctor in the US, Dr Bradfield. I cannot begin to express how breathtaking the view from the waiting room was; as I stood in front of the receptionist I looked out to see a wall of blue where the St John’s River met the wonderfully blue sky. The view of the river was as panoramic as the glass frontage of the building, as wonderful sight. Dr Bradfield said that you often see Dolphins bobbing around in the river; again not something I have ever witnessed looking out of the windows at Addenbrooke’s, you’d be lucky to see a solitary plant, even a weed.


Finally, Friday arrived and that was the simulation for the Proton Therapy. This required Camille to have her third general anaesthetic of the week while they CT scanned her and moulded the mask around her face ready for treatment. The procedure sounds unpleasant and I’m once again glad we only had it explained to us and our little girl was delivered back to us sleepy but unscathed.


That was it; we then had a full week off before Camille was due to start her treatment on Tuesday 25th January.


The Varmints at Baymeadows


Whilst Camille was enduring all of these appointments we were quite keen to find an apartment as soon as possible so we wouldn’t have to rely on our wonderfully clueless friends at the Marriott. As I mentioned in my last blog post, we had seen the industrial style accommodation Downtown, so on Tuesday we set up a couple of appointments in more grassy neighbourhoods.


Firstly, we had booked an appointment at a grand sounding community called “Venetian on the Ortega”. Luckily the woman didn’t show up as we had already decided that it wasn’t for us without even seeing the interior or grounds. The gated community was surrounded by unappealing properties, with little in the way of amenities except for a dirty looking Chinese takeaway. In addition to the Feng Shui, the waft emanating from the Ortega River was somewhat “surprising” and burnt the insides of my nostrils.


As the clock ticked twenty minutes past our scheduled viewing, we rev’d up the Charger and made a break for it towards our next appointment on the Southside of Jacksonville. This area looked far more appealing: a mall, restaurants, woodland, an eight foot high fence around the community! We were pretty much sold on it already. We were shown the apartment which was very funky to say the least, yet offered as much space as we needed. I was happy with it, although Hayley was a little squeamish about the cleanliness of the condo. We took the apartment on the proviso that they gave it a deep clean before we took the keys. We moved in the following night.


All was well; we covered the “older than expected” furniture with throws and purchased an upmarket air freshener from the local Walmart (upmarket here smells of warm apple pie, and it really does). All was well until disaster struck. We had returned home from an appointment; while I emptied the trunk (see, I’m fitting in) Hayley and the girls entered the apartment. The screams shook the very foundations of the building as Lucia sprinted out of the door shouting “SPIDDDEEEERRRRRRR!” I wandered in calmly to see Hayley looking as white as a ghost. “Take a look in the sink” she requested. I went into the kitchen to see what looked ‘roach like but probably just a beetle. It was at least an inch long and as I turned on the tap to wash the little critter away, it jumped into gear and scuttled across the kitchen counter and behind the toaster. Hayley at this point was issuing threats of leaving, harming me for letting it loose and suicide through fear of being eaten by the inch long specimen. I grabbed the blighter and popped him in the Beetle recycling machine. Before I had finished washing my hands, Hayley was on the phone to the landlady asking that she deal with the bug problems. While we were in Orlando last week, she came over and poisoned every possible orifice that the varmints could be hiding. We came back to find the remnants of two on the carpet; no live ones to speak of, but all sink drains covered just in case.


Needless to say, Hayley is looking at other apartments that may be cleaner, less buggy and probably far more expensive.


Disney Week


So, we did manage to get down to Disney for a week as Camille had a week off before treatment starts. We drove down on Saturday and met my parents (unsurprisingly waiting at the hotel door) who had flown over the day before. The week was spent purely at the Disney parks with a day at Seaworld nestled in the middle. We would have gone to Universal but two days were ruined by biblical rain storms. The first day that we were washed out, we had made the journey to Seaworld by taxi; as we travelled East on the I-4 toward the park the rain started, started good. We ran out of the taxi and stood under a shelter outside the park, where we stayed for 45 minutes before deciding that swimming into Seaworld was not the best idea we’ve ever had.


Disney is really expensive and within minutes we had been scammed out of some good hard bucks. Two cups, Mickey on the side, plastic in texture, $30 in price. Meals were laced with an automatic 18% gratuity for service that was generally just OK. A pint, a wine and a water at the Rose and Crown pub in EPCOT reached the dizzy heights of nearly $30 too. I could cry. Also, a little tip; if you’re going to stay on site at Disney, do the Disney Dining Plan.


The girls had a lot of fun but midway through the week, we had a little scare with Camille. On Wednesday morning Camille said she felt sick and within minutes had actually vomited. This had followed Camille falling asleep in one of the parks the previous day, something that had become extremely unusual. These two instances are both indicators that her shunt, draining the fluid from her brain was not working. It is entirely possible that the MRI scan the previous week had irritated the valve within the device and caused it to get blocked. I put a call into Jacksonville for advice and before long we were being requested to return so that she could be checked over by the neurosurgery team. She had improved by the time the request came so we decided to hold out and see whether she went downhill again. Luckily for us, she didn’t and we managed to stay in Orlando for the whole time.


I did get a call from Dr Danny the following day on the premise that he wanted to see how she was. Midway through the conversation he said the words “Hey, listen. I’ve got to have a difficult conversation with you, and rather than wait until you come back, you need to know now”. At this point I began to shake; I was in the middle of EPCOT with Hayley, the girls and my parents all sitting waiting for me underneath Spaceship Earth, the big globe that defines the park. Dr Danny went on, “I’ve been putting together Camille’s plan and when I looked at the scan taken last week it didn’t seem to match what Mr Mallucci had said in his surgical notes following her operation”. From this point on I thought that I was being told that it had grown and he wouldn’t give Camille the Proton Therapy. Dr Danny gave me Mr Mallucci’s mobile number as he had been speaking with him and asked me to give him a call the following day; I called him straight away. Mr Mallucci answered and explained the situation to me in more detail. It seems that in the months since the operation, the residual tumour that was cemented to Camille’s brain stem has come away in part and Mr Mallucci now feels that he can go in with the opportunity to completely resect the last two cubic centimetres. A complete resection would put Camille into a bracket three times better than the one she is in at the moment. Mr Mallucci cannot promise that it will all come out, but two thirds have come away from the brain stem and it looks possible.


This does mean that we are going to have to fly back to England for Mr Mallucci to operate on Camille again in Liverpool before we fly back out to the US to commence Proton Therapy. This is a major inconvenience, but given the possible increase in incident free survival, it is something that will have to be done. Now, there was the option that an American surgeon takes on the task, but Mr Mallucci was very insistent that he does it, for Camille’s health (US surgeons are far more aggressive and less concerned with the child’s disabilities post-surgery) and possibly to complete the job that he started; possibly one of the greatest resections he will ever do.


There is a part of us that is very frustrated as we haven’t had a scan done since Camille’s operation in October. All it would have taken is a scan to be done early January, before we headed out for them to see what Dr Danny saw. What a waste of time and money.


We are still in Jacksonville waiting for the full set of scans to reach Mr Mallucci so that he can confirm his intentions and timescales. As soon as we know, we fly. This time next week, I expect to be on terra firma UK style.