New Beginnings

Jul 7 2011

It’s always a difficult challenge following Hayley’s guest blogs and my struggle with this week’s blog has caused me to be a few days late with this post. Hayley’s emotional statement last week is still a very good indication of what goes through her mind on a day to day basis; she’s still haunted by the events of the past two years, and last week’s post happened to coincide with the two year anniversary of that day when Camille was diagnosed.


As a family, we’ve had to move on. We have had to come to terms with Camille’s condition and work hard to battle our way through the extremely difficult times and grab the moments that make us exhale in relief with both hands. Although we are in a position now that we could have only dreamed of two years ago, I would still say that there have been many more hard days filled with disappointments and fear than there has been days when we could raise a smile. The eighteen months of chemotherapy didn’t really ever get us anywhere, aside from biding time for Camille to grow and surgery to become a miniscule safer, the proton therapy again only really filled us with fear for what the long term damage could be. The days we have really been able to smile are after each surgery at Alder Hey and probably at the end of proton therapy as we packed our bags in Jacksonville and made our way back down the I95 towards Orlando.


It is important to recognise the good wishes we had a couple of weeks ago when we received good news from Addenbrooke’s regarding Camille’s first MRI scan, but even this positive event didn’t result in any celebration in our household and this was reinforced earlier last week as Hayley and I visited Mr Garnett and Amos to have a chat about our current position. Mr Garnett always exudes caution and it was no surprise that he was careful with his description of the scan. Essentially the message was that this scan doesn’t actually mean anything at the moment; this scan now becomes our benchmark for future scans and comparisons thereof. The scan looked clear; there was a little area near the brainstem that flared under the scans contrast but this is thought to be scar tissue. We’re not certain, but following Mr Mallucci’s description it is more likely. We will probably never be certain as the only way to find out would be to go back in under microscope and survey the area. If there are no changes in this area, going back in would not be on the agenda. So the meeting was one of those times in the last two years that left more questions than answers and Hayley was again left feeling anxious about what this all meant and what that area on the brainstem actually was.


Unfortunately, this meeting coincided with some upsetting news of another child who suffered from the same brain tumour that engulfed Camille; a little boy who has now relapsed. The bad news always seems to push any positives to one side and now Hayley is looking at Camille through her own microscope for minute signs that the tumour has returned. We’re over three months away from the next scan so I hope that Camille continues to improve in herself and that will give Hayley some confidence that we are heading in the right direction.


Part of Camille’s rehabilitation is attending, firstly her pre-school, but also the pending transition to the school next door where Lucia already goes. This is a major step for Camille and it is extremely important that the next few years are grasped with both hands so that she can excel through this rehabilitation phase and position herself alongside her peers. We’re up for the challenge and especially Hayley, who has dedicated much of the working week to ensure that Camille has every chance to find her feet and develop in the ways that every child should have the opportunity to do. Camille is currently getting this support at her pre-school; the small group of children and wonderful team of adults that work there have integrated Camille so well that she is bending over backwards to get into the building in the morning. However, there seems to be an element of fear from the bigger organisation next door, a fear of the unknown, which I guess is understandable. I’m sure after a short period of time at the school, Camille will grown in this new environment and many of the fears that the school and we as parents have will become less scary, but for now, communication is key and a little bit of extra support to help understand Camille is extremely important.


With this in mind, we were pleased that Camille’s settling in session at the school on Monday of this week was enjoyed by Camille and her new teacher, Miss Wyndham, seemed very pleased with Camille’s integration into the classroom. It may have helped that her big sister Lucia was in the class with her, but nevertheless, Camille’s first morning at big school went by without a hitch, well nearly.


Another element of Camille’s rehabilitation is the small shoots of progress we are making with her eating. Camille has gone from refusing all food for pretty much two years to her beginning to eat food, not good healthy food, but food nevertheless. This has only been going on for a week or so and Camille is now getting enough calories through Milky Bar mousses to allow us to drop her feed through her nose tube overnight. We had understood and hoped that Camille would be joining the other children at the school for lunch on Monday but Hayley was informed on arrival that this wouldn’t be possible as Camille will only be starting part-time in September. For most people this isn’t a big deal, but for Hayley and Camille it was the opportunity to get her around her peers at lunch time, an opportunity to take the rehabilitation phase a step further. Hayley cried the disappointment out when she got home, a felt hopeless, feelings that I hope don’t become the norm.


I am sitting on a train at the moment heading down to my office on the south coast with a vast amount of guilt running through my veins, as today is the day that Camille has her Hickman Line out. I’ve never missed any of Camille’s operations and although this is a small procedure, I would ideally have wanted to be there. The problem I have is our time in the US; as I had so much time off work earlier in the year, I have no holiday left, no chance to get away from an internal meeting. I haven’t explained to my boss fully what is happening today; I feel like my Michael Douglas in Falling Down moment is coming.


Finally, we do have some good news and now is probably the time that we can share it with you. Wednesday last week saw Hayley and I visit Ipswich Hospital again for a very different reason. Camille and Lucia are going to have a little brother or sister early in the New Year. The pregnancy wasn’t planned but we are all very excited about it (as was Amos, in fact he very nearly cart wheeled around us), Camille and Lucia are in the process of brainstorming names for us as we speak. This is the positive news that can cause us to celebrate, a non-alcoholic celebration of course.