Living in America

Jan 11 2011

Weeks of waiting and then all of a sudden we are dragged across the Atlantic to our new base for Camille’s last stage of treatment, Proton Therapy. We knew it was coming and everything was in place but even with all the preparation in the world, sometimes you can still be surprised.

The week started still trying to get over the excessive expenditure that Lucia had inadvertently processed on her iPod the following day; having read story after story of similar cases where children had racked up bills of hundreds of pounds we hadn’t expected to get anything back. Imagine our delight when the wonder that is Apple’s iStore came back with the surprising yet wonderful news that the bill in its entirety would be refunded with their full apologies. I nearly fell off my chair.


Over the previous week we had received some correspondence from Florida regarding the timescales for getting us over, but everything was waiting on Dr Horan at Addenbrooke’s to return back to work after the Christmas break. I was delighted to see early on Monday morning an e-mail appear from Dr Horan notifying Amy in Florida that we could go at any time that suits. I followed up the e-mail with a little nudge suggesting that we were pretty keen to get out as soon as possible, and then we sat back and waited for the e-mail to say we were going.


Wednesday afternoon came and went without an e-mail so after some pressure from my good wife, I picked up the phone to speak with Amy to see where we were in the process. All was well; firstly I managed to dial the US without internal combustion (I loathe talking on the phone to anybody, let alone someone in another country and someone who I was looking to chase) and secondly she answered with a positive response stating that she was just waiting on one appointment and we should be able to go out the following week. She finished by suggesting that they may get an answer that afternoon. So I waited up that night until a normal working day was finished in Florida and beyond because we were a Gnats big toe away from winning the final Ashes test, but nothing. I went to bed without knowing when we were going, the fear of having to phone Amy again and also not knowing the cricket score. I awoke at 6.30am with a startle; quick, first question, where am I? Bed, good, OK. Second question: what’s the cricket score? So I reached down beside my bed and thumbed the refresh button on my phone and just noticed a handful of e-mails had arrived since I hit the pillow five hours previously. I didn’t stop to analyse the cricket score, I traversed the phone’s software to scan the e-mails to reveal an e-mail from Amy. Our first appointment is at 10.00am on Monday, be there or be square.


The next action was going to make or break the day so I acted quickly, cautiously and with no fear for my safety. Do I wake Hayley up and tell her?


I decided it was the best idea and muttered into her foam plugged ear “we’ve got an e-mail; they want us there on Monday”. No sooner had I seen Hayley’s expression before I rushed through to the living room to book the flights and whatever else needed urgent attention. We had to organise all sorts of things; Hayley was on the phone to the hospital organising medicines, eye ointments, travel letters etc, while I was talking with the special assistance team at Virgin Atlantic. Clearly with a lot of fluid on board they need to be sure Camille is not an extremist, so the only way to do this is to present them a letter from a doctor; all a terrorist would need to do is get some NHS headed paper with a made up letter. Hayley also sorted out our house-sitters; no parties or sleeping in our bed!


We’d been secretly hoping for a free upgrade so that we could have enough space to feed Camille and stuff, so when a pleasant Virgin grabbed us as we walked towards check-in I thought my numbers had come in. Alas no, but she did help get us through the process in double quick time, and eventually leaving us with the moody Russian girl behind the podium wishing our bags were lighter and that she could make the leap up to cabin crew. We were then taking through a special assistance security check where Camille was given special assistance as she is not allowed to go through the scanner on account of her shunt.


We boarded first and found out from the chief cabin crewer that there was only going to be 100 people on board (it was a jumbo jet) and we would probably have the whole section of the plane to ourselves. There were three other people in the section but nevertheless, the seven of us shared about 80 seats for the entire journey. The girls did seriously well, hardly getting frustrated or bored for the entire nine and a half hour journey. In fact, as there were as many cabin crew as there were passengers, the staff spent quite a while with the girls decorating the plane with their personally crafted pictures. When the plane landed in Orlando we were invited to go up to the flight deck where Lucia sat in the pilot’s seat while Camille and I sat in the first officer’s chair. That was an awesome experience, and the whole area is tiny. I have no idea how they even taxi the thing as the windows are so small, I’d be taking out everything in my path.


We stayed close to Orlando airport that night before making the 150 mile journey up to Jacksonville. It was all a little too simple for my liking and without getting stressed, lost or tired we arrived in Jacksonville about two and a half hours too early. The hotel in Jacksonville is a Courtyard Marriott and we are staying here until we find a place to live for the remainder of our time. The hotel itself is fine, but the staff are probably the American equivalent of Basil and Sybil Fawlty. They are beyond useless, so much so that you feel sorry for them. Hayley ordered an Asian chicken salad last night that came out with Thousand Island dressing as the sauce and then caught sight of the reception clerk spraying his desk and everything on it with an almighty sneeze that shook the building. We won’t eat there again, but I am already feeling the constriction of my jeans.


We are now arranging appointments to review condos for the remainder of our stay, so far we’ve only seen one. The website painted the picture of an amazing top class tower block and Hayley was smitten. As we drove through the locality, Hayley said that the area looked quite nice; I’d been focused on the road so I looked up only to see a burnt out, derelict building to my right. It wasn’t all that bad but the apartments weren’t perfect at all, mainly because they had concrete floors and all the pipe work showing in the ceilings. I have that look at home, it’s called the garage. We’re seeing a couple more tomorrow, so fingers crossed.


We also met with Camille’s doctor here in Jacksonville, Dr Danny Indelicato. He was a really nice guy and we went through some of the stuff that he is looking to do while we are here. He did go through the risks in some detail which is never easy to hear, but like pretty much every doctor we have met he has to do it. He did say that he wants to limit the risk of these things happening to a few percent but that doesn’t mean they won’t happen. He will now formulate a plan and with him we will be able to come up with the best course of action for Camille. We’ve got appointments all this week for various things which, I will fill you in on next week. Dr Danny does seem quite impressive and does even know Mr Mallucci.


So our first few days in Jacksonville have gone OK, we just now need to get the rest of this week done before spending a few days down in Disney. Oh by the way, it’s flinging flanging cold!