English Rose

Apr 17 2011

At 8.30am this morning, the solid thud of tyre on tarmac meant only one thing, our journey in Jacksonville, Florida was over and we were back in Blighty. We have pretty much been resident in the United States since early January and if we are all completely honest, I think we are going to miss the place and the people.


We started the week with just the remaining five treatments to go. I had already changed the flights with Virgin Atlantic once; however, there was a high risk that the proton machine could go down and we would be delayed further, costing another £90 per person to change the flight date. Luckily, it didn’t work out that way and we managed to get through the weekend without any further hiccups. It’s easy to imagine a non-eventful week, where everyone rejoiced at Camille finishing treatment, not only in Florida but in total. When you have a child with cancer, it’s not like that; there is no rejoicing, there is no finality to the proceedings. We are only just beginning.


I had considered maybe even stopping writing the blog now that Camille has begun a life without treatment, but I too needed to think a little bit harder about what life is or could be like. Camille will not be treated going forward, but that doesn’t mean she has been cured from the Ependymoma. Brain tumours are complex and we know that Ependymoma have a history of returning, even when you least expect it. The critical time for Camille is the next twelve to eighteen months, according to Dr Danny in our sign off chat. Tumour re-growth and other general effects caused by radiation will normally present themselves in that time frame; but “normally” doesn’t mean a lot. “Normally” is a word that tells you what will happen most regularly with a large group of people; Camille is one person and what happens to her is not going to be have any effect on others and vice versa. We, like so many others, are faced with a future of uncertainty.


The long term effects of radiotherapy are again unknown, as with reoccurrence, we can only work on statistics. This week would be a major contributing factor towards any future deficits as we pushed her above the standard recognised levels of radiation into the boost phase. Radiation is measured in Gray (Gy) and Camille’s final three treatments took her from the widely recognised 54 Gy to nearly 59 Gy. Dr Danny gave us the options and with Camille’s history, we had to give it everything this one time to give us the best chance of beating this thing once and for all. Dr Danny agreed with this theory, stating that we will never be able to look back with any regrets that we didn’t do everything we could. He did also say that sometimes he has to look back at the original scans of a child to be able to justify to himself that the large levels of radiation he Is prescribing to a child is the right thing to do. In Camille’s case, he looked back to June 2009 and had no doubts that we had followed the correct path.


The thoughts of leaving the safety net of treatment into the unknown and all of the risks that we have taken, really hit Hayley hard this week and on Wednesday it was difficult to get anything out of her at all; she was so, so down. I’m not even that sure how it all triggered, but I think Hayley being let down badly by a friend was the straw the broke the camel’s back. We actually had to pop to Nemours that morning to see the psychologist for her final session with Camille. Hayley freely admitted to her that she was having a bad day and from that split-second, the psychologist was looking to change her attention away from Camille to Hayley. It’s not the sort of thing thirty minutes is going to resolve, but perhaps in a couple of years, when nothing happens, Hayley will be able to feel some kind of confidence that we have got a chance. I’m always the optimist; I know we’re going to be OK.


It was a sad goodbye when we finally left the Proton Institute for the final time on Friday. Everyone there had been so welcoming, we will be eternally grateful. I think I’ve probably mentioned all of the people that have touched us over the past two months and I feel pretty satisfied that other children from the UK will be getting this opportunity where perhaps six months ago they wouldn’t have done. There are now fifteen more children from the UK heading over in the next few weeks to commence treatment, four of which we believe are from Addenbrooke’s where Camille was the first to get a successful application. Now, I am unsure whether our pressurising of Addenbrooke’s has had any bearing on the four new patients being referred to Jacksonville, but even if we played a small part in that, I feel incredibly proud of ourselves, especially of Hayley who was the driving force throughout.


Before we left Proton on Friday, they gave Camille a little party to send her off on her way. There’s not too much to say except that the cake was delicious. I am now back to the weight I was before the gym-bug hit me and lucky to fit in the economy seat that we travelled home in.


We left Jacksonville mid-morning to make the drive down to Orlando Airport. The flight wasn’t until 19.30pm but we had decided to do some last minute shopping at the Millennia Mall before saying farewell to Florida. The problem we had was that we were maxed out on weight for all of our cases; any shopping would have to be as light as a feather and as slight as an American sausage. We parked up at Millennia with all of our cases in the car and everything that could get us home. Within minutes of entering the car park, Hayley and I had clocked four security cars and as many vagrants pretending to have lost their cars. For some reason, neither of us mentioned our concerns about leaving the bags in the car until twenty minutes later, when we made a swift decision to get out of Dodge and get those cases checked in at the good safe airport.


Arriving at the airport was a real comedown. Jacksonville is not your normal British tourist spot, so for three or so months, we have escaped the Brits abroad. Within minutes of entering the delightful Economy check-in queue, we were brought back to our reality with a sizzle. Yes, the weather had been 90 centigrade for the past couple of weeks, meaning that a high proportion of the British would have third degree burns and be proudly displaying the results to one and all. The red raw blistering skin surrounding unsightly tattoo designs looked like somebody had freshly branded these poor people with the Addams Family crest. Oh, how proud I was at that point to be British. In fact, now we are back, I would like to congratulate the little gutter snipe that decided that breaking into my car while we were away was a nice thing to do. I’m sure he (or she) will have great fun presenting PowerPoint to his mates with my ten year old work projector. They left my CDs, says a lot!


We’ve been incredibly tired today and when we arrived home, Hayley’s sister’s husband and Hayley’s brother (as well as my mother – soft furnishings) were putting the finishing touches to Camille’s new playhouse, for her birthday just days away. It looks wonderful; the guys did a great job.


Right, that’s it. I’m spent.