Couldn't Get To Sleep Last Night

Jan 30 2011

Within hours of writing last week’s blog, Hayley was on the phone with the very helpful (yet very systematic) Virgin Atlantic team, booking our flights home. Within twenty-four hours of writing the blog, we were sitting in our seats on the 19.50 flight back to London Gatwick. Our week has moved extremely quickly, at times too quickly for my liking.


On the Monday morning in Jacksonville, we were not sure how the day would pan out. We had been hoping that the MRI scans taken in Jacksonville would make it over the Atlantic before Monday so that Mr Mallucci could review them and give us the go ahead to come home before he took the remainder of the week off. Hayley is not well known for being the most patient person in the world, so it was no surprise that by 9.30am US ET she was dialling Mr Mallucci’s now not so private number. He did answer and luckily the scans had just arrived; he asked that we gave him an hour or so for them to be uploaded and to give him a call back.


We also had a meeting with Dr Indelicato at the Proton Therapy Center in Jacksonville as a kind of sign off before we headed home. Hayley had been sent a study from a very clever guy called Tom Merchant in the US that detailed the event-free success rates of surgery and proton therapy in children; Dr Indelicato was armed and ready with the same study in hard copy format as we joined him for the chat. After speaking with Mr Mallucci whilst we were in Disney, it was very clear that there is a chance that he may be able to get all of the remaining tumour out in this operation. The study from Tom Merchant shows that in girls, who are now over three, the event-free five year success rate is above 80%, a percentage we could have only dreamed of once upon a time. Mr Mallucci will be able to get some more tumour resected, but it may be that a certain proportion of the residual tumour is still inoperable, risking Camille’s life to go anywhere near it. If this is the case, it is a little unclear in the study how this affects the results with his results being anywhere between a low percentage to about 65% event-free survival. Nevertheless, the study and the operation has given us additional hope, additional hope that Camille will get through all of this with a future without cancer.


Half way through our meeting with Dr Indelicato, Hayley’s phone rang, but without any sort of signal we were unable to answer the call. I raced outside bumbling around with the Blackberry when I saw Dr Indelicato on the phone across the reception area from where I was looking stupid. It was Mr Mallucci; the scans had shown that it was worth going back in. However, it is important to note that the top of where the residual tumour sits is where the two main optic nerves cross each other. Dr Indelicato had described to us how the Proton laser works like a knife; hitting the cross section of optic nerves with a high Gray (Gy) level would seriously risk Camille’s eyesight in both eyes, potentially leaving her blind. This is the also the section of the tumour that has moved away from the brain stem, giving Mr Mallucci a window to clear it away from the optic nerves. This is the main reason we are to return to Alder Hey, to save Camille’s eyesight. The chance of a full resection is still really just a possibility.


There was also the question of whether the tumour had grown at all since the last scan was taken in the operating theatre at Alder Hey at the end of her last big operation. Mr Mallucci said he was unsure, but it does look “more evident”. He went to explain that after all of the pressure from the bulk of the tumour was taken off the brain stem, the small piece that was left may just have relaxed a bit and like a sponge would, filled a little more space. Essentially this doesn’t matter as Mr Mallucci is going in to operate again; for us, we are dreaming about the conversation where we find out that she has a clear scan.


One other thing Mr Mallucci confirmed is that we will be heading up to Alder Hey on the following Wednesday for a Thursday operation; there is no hanging around.


As soon as we left the Proton Therapy Center, Hayley was on the phone to Virgin Atlantic to see if we could jump on the plane that evening. It’s a good 150 miles from Jacksonville to Orlando Airport, but we just had enough time to pack and get down there for check-in. We arrived about three hours before the flight and met up with my parents who were also flying home on the same flight after spending the previous week with us in Orlando. We arrived back in London just before 9.00am on Tuesday, the girls having slept most of the way back, Hayley and I struggling to get much more than an hour. Apart from Lucia throwing up in the cab on the way home, it was pretty event free but since then the girls have been struggling with the jetlag, keeping Hayley and I company throughout the night. I jest a little, it has got better, but only a little.


I managed to get a few days work in, even taking a trip into London on Friday to sit a meeting. On the way back I tried to catch forty-winks on the train knowing that the Camille’s Appeal 24 Hour Karting Challenge was that night and I was drafted in at the last minute. There was no chance of me catching anything on the train, the constant rumbling of noise and my fear of dribbling in front of the guy opposite was enough to prevent my slumber.


The Go-Kart event kicked off at 8.00pm with five teams racing over the full 24 hours to see who could do the most laps. My brother-in-law James took the first leg for Team Camille and ended up with his face in tyres on a couple of occasions in the first twenty minutes as team four, with the all too similar name Team Cam App raced into the lead with plenty of aggression and the odd tap of James’ rear-end. James began to be surrounded by the red-mist and would have tried to use the same tactics if only he could catch the young whippersnappers.


After a good hour long spell from the quick but headless member of Team Cam App (again, not to be confused with our team who were routed at the bottom), they had opened up a small lead even after being slapped with three black flags and time penalties. As the hours ticked on, our hope of achieving anything apart from the wooden spoon were dwindling by the minute; injuries and weight issues were hampering our ability to haul the lightweight karts around the track. I would have been by far the heaviest in any one of the other teams, but even I was dwarfed by our illustrious leader Stewart Bethell.


Challenging Team Cam App at the front was firstly Team Audi and then the rather interestingly named Shandy’s Got An ST (the computer ran out of digits, I wonder what the last letter would have been, let’s just say Shandy was walking with a limp). Team Itineris were at one point given us a sniff of a place other than last, but a quick middle section from the digital marketers (and other services, , quality or your money back) left us in no doubt who the losers were going to be.


The first six hours went flying by, everyone with a spring in their step and only the odd disagreement with other teams on their “accidental” collisions. It was after 2.00am that if became a little more strained. We had lost a member or two through injury and James had gone to pick my father-in-law up from the airport. Team Cam App was soon down to three members of their team as the other guys lay in spoons upstairs (I heard). Sam Wilkinson, Aaron Farrell and Captain Steven Thorley stayed up through the night giving a new meaning to endurance; if I didn’t know the boys so well I would have thought illegal substances were involved.


Most of us struggled to get any sleep so by the time the end came at 8.00pm the following night we were all shattered and ready for a beer followed by bed. Team Cam App did win by about 20 laps over Shandy’s Got Something or Other and Itineris came third beating Team Audi by just over a lap, pretty amazing over such a long distance. I am trying to find ways to limit our damage so the best stat I could come up with was that our average lap time over the 24 hours was 23.2 seconds, the winner was 22.3, just 0.9 of a second per lap.


I woke this morning aching from top to bottom. The talk yesterday was that if we did it again we would only do 12 hours; I like the fact that we did 24 hours. Fundraising should be a challenge, why would people sponsor you lots of money if it was easy. Next year we’ll do it on peddle go karts!