The Big Show

Jun 12 2011

The time has finally come for Camille’s first post treatment scan and as we prepare for tomorrow and the possibility of days without knowing either way what the situation is, we sit in the doom and gloom of the horrible June showers waiting for our lives to be laid out in front of us.


The truth is, I think both Hayley and I have been fairly calm heading towards this day. We had always dreaded the thought of the fortnight run up to an MRI scan; we had expected that we wouldn’t be able to function due to the fear of what might happen. So, the question is, why have we been able to deal with this situation? I’ve asked myself that numerous times in the last couple of days and I’m not really sure I’ve come up with an answer. It may be to do with our expectations; back in the US, Dr Indelicato set our expectations quite low, by suggesting that this scan would probably not show too much due to the radiation necrosis visible on the image. That may have something to do with it. Perhaps it is because Camille is just so well at the moment. She’s a little girl enjoying pre-school, enjoying playing and enjoying being normal, why wouldn’t she be OK?


As I have said, this question has been playing on my mind a bit and all I can think of is that we all are cherishing this time of normality and nothing is going to take it away from us. It’s taken a long time to get here and we are not prepared to have it taken away from us.


So we’ll head off to Addenbrooke’s first thing to go through the procedure of waiting around for ever and a day for an anaesthetist and then the MRI team to be ready. Camille will go into the MRI suite fully asleep all by herself (with medical professionals obviously), while we wait nervously outside. We used to be able to go in with her, but now that they have to give her a general anaesthetic to ensure a successful scan, we are not allowed in. Camille will be in there for about forty-five minutes which will give the radiography team enough time to scan the full head and spine. The MRI suite at Addenbrooke’s is situated in the depths of the hospital and makes no attempt to put patients and parents at ease. That could be the single most noticeable difference between the NHS and the money laden clinics in America, the décor.


We’ve had a pretty busy week running up to the scan, I’ve been struggling with my exams and Camille has had an audiology test to check up on the effects of radiation. Hayley took Camille to Addenbrooke’s once again and went through a pretty good test of her hearing.  It seems that her right ear is underperforming in comparison to the left ear. We always knew that this was a danger but luckily at this stage her combined level of hearing is actually pretty good. The biggest issue is that if you talk to her whilst she is facing the other way, she struggles to determine where the voice is coming from.  The Audiologist has classed Camille as hearing impaired but at this stage we do not need to do anything. We’re obviously hoping that this will be the extent of the damage to her hearing but it is hard to tell as the damage caused by the radiotherapy can present itself up to a year or more after the treatment.


Lucia also had a busy week as she prepared for her first performance with SADPA (Suffolk Academy of Dance and Performing Arts) and their “Big Show” in aid of Camille’s Appeal. Yesterday was show day, and SADPA performed an afternoon and evening session at the Ipswich Regent.  They’d sold in the region of 800 tickets in all and ended up raising over £3,000 for the charity, a truly amazing effort. It must have been so rewarding for Louise Chapman, the wonderful principal of SADPA, who had put in months of effort with the performers to come up with such a great performance. The team stepped their way through some of the great musicals, singing and dancing for the audience. I was given an opportunity to stand on stage and thank everyone who worked on the show but as per normal, I’m sure I forgot to thank some people. The amount of effort that all of the performers put into it was truly remarkable and I believe the whole plan to do the show for Camille’s Appeal was the idea of the SADPA seniors.


We of course had our own personal highlights from the show and they were pretty much focused around Lucia’s scenes. Yes, Lucia danced around the stage as a Wizard of Oz scarecrow, she wiggled with the others as a street urchin from Oliver and had a Jolly Holiday with Mary Poppins. We both felt so proud of her, she just seemed so tiny on stage, so lovely. Thank you to Louise for getting her involved.


Camille watched the first show and even got up on stage herself at the end, but the bravery award goes to our very own Stewart Bethell who hosted the event. At one stage, the strapping Stewart stepped out on stage wearing a Tinkerbell outfit that was snug to say the least. It was worth it as a member of the audience offered to sponsor him a substantial sum of money to wear that very same costume for our Fun Run in August.


So another busy week has gone and all we need now is for all of you to think of Camille tomorrow and let’s hope that we are just another step away from that “all clear”.