We arrived at Addenbrooke’s just after 9.00am on Monday morning thinking that we were due at that time for a scan some time later that morning, but on arrival we were met with a little frustration from the nursing staff as they communicated to us that we should have been there a lot earlier for a 9.00am scan. Here’s the lesson….. read the documentation in full paying particular attention to time and locations.

 

Luckily, we were still the first to arrive at the day unit and we were dealt with pretty swiftly. In fact it wasn’t long before we were sent for from the MRI suite. Things have changed since we first began having regular MRI scans. Initially, Camille used to have some oral sedation to send her off to sleep, but after a while the “happy drink” didn’t perform and she began to wake up in the scans. Under oral sedation I was able to go into the scanning facility with Camille and stand with her while she was in the machine but unfortunately now that she has IV sedation, she is ventilated and we are not allowed in.

 

The problem is exasperated now that Camille has learnt that a general anaesthetic means that she may wake up in pain, following the multiple surgeries that she has endured. So as she was taken through to the MRI room, she was clinging to Hayley’s clothes screaming that she didn’t want to go for a sleep. Even after all this time, it’s still incredibly difficult to see your child in complete fear of what’s going to happen, even though we know it’s just a simple photograph.

 

Camille was soon relaxed after a whiff of the propofol, and happily giggling in what could be construed as a drunken stupor. As soon as she goes under, Hayley is ushered out and we sit patiently out in the recovery area reading magazines from Christmas time and watching the ever slowing clock. It doesn’t seem to take long for Camille to come out when you’re not standing in there. Twenty-five or so minutes went past and we were greeted by our sleeping little princess. The whole morning went really quickly without issue and before long, Camille was up and at them, ready to go home.

 

We did see Amos on the way out and he promised that he wouldn’t keep us waiting for the results. Later that afternoon while I was back working at home, the phone rang and I was greeted with Amos on the other end. “How are you?” are asked him politely and without giving him an opportunity to respond I followed up with “Actually, how are we?” and the response of “We’re good” was enough to settle my nerves a little. I say that, but the truth is my heart was beating at two hundred beats per minute and I just needed all of the information there and then. So, the scan looked good, there was nothing on there that Amos was worried about. A few areas were showing some symptoms of radiotherapy, but we’ve know that this would be the case and especially as this scan was quite soon after the course of radiation had finished. So, the scan was done with, there and then we had been given the result we wanted. Amos scheduled the next scan for four months time as we’re a little ahead of time and we now can focus on other things for a few weeks until we begin the build up to the next one.

 

Hayley has also been working hard this week to get Camille’s special education needs to be assessed. Thankfully, some persistence has enabled Hayley to get the County Council engaged in Camille and we are starting to see some movement. I can’t imagine the process will be particularly swift, but the ball has begun to roll and with Hayley propelling it forward, there is little chance that it will stop before a result is achieved.

 

I will end the blog this week with another little plea; in just over two weeks we are due to hold our AGM for Camille’s Appeal. This is the time where we elect our Trustees and Officers for the charity. Due to recent changes, we are in need of finding some great individuals who would be prepared to be a Trustee or a Chairperson or Treasurer. We need as many people as you can think of that can spare a few hours a week on Camille’s Appeal work. It’s extremely important that we continue the evolution of the charity to ensure that it can continue to the correct way going forward from this year into next and beyond. Please let me know through the admin@camillesappeal.co.uk address so that we can grab all of those top quality individuals to drive this organisation forward.

 

This week sees Camille and Lucia as bridesmaids for the big wedding of my cousin Stevie and the lovely Clare. We’re really looking forward to the wedding and the girls can’t wait to wear their lovely dresses.