Don't Roll Your Eyes

Mar 12 2012

It is Murphy’s Law that as the notification letter for Camille’s next scan hits our door mat; Camille becomes ill, complaining of headaches and lethargy. So, when the thermometer revealed that Camille had a temperature up towards 38.0c, the relief was plain to see.

It’s unfortunate for Camille that her fever was met with joy in our household but that’s just the way it is now. A year or two ago, we would have been under lock and key in the children’s ward at Ipswich Hospital for 48 hours while Camille had antibiotics pumped into her to clear the infection; now, Camille’s body is expected to fight off the infection herself. Secondly, and most importantly, a temperature gives us an explanation to symptoms that could so easily be for a more sinister reason.


Anyway, all of this means that we’ve had a poorly little girl at home for that last few days. I sent her in to school on Thursday last week when I probably shouldn’t have, only for Hayley to have to go in late morning because Camille had slept during that session and wasn’t looking very well. The main reason I tried to get her to go in last week was because of her recent reluctance to go into school. If the truth be known, I’m quite worried for Camille at the moment. One of my biggest fears for some time is Camille being bullied by her peers. Now, I don’t think that Camille is being bullied at school, but I do have a huge worry that she is being left out at playtime and being dismissed by the other children. Even Lucia, who is great with Camille most of the time has been caught rolling her eyes towards her friends reacting to something Camille has said. I don’t want to judge Lucia, because I know how difficult it is to make your own way in the world, but Camille’s journey is going to be tougher than most. I may have been leading Camille in my style of questioning earlier but she did say that playtime is worrying her because people don’t want to play with her or do what she is doing.


Camille’s teacher did say to us at Parent’s Evening last week that she thinks Camille is doing really well and she is interacting very well with the other kids. Maybe she is; maybe it’s nothing. Camille’s teacher did say that she now asks children to play with her by approaching them and asking them directly. She thinks that this is a big improvement for Camille as she wants to engage more with the other children whereas before, she was more comfortable doing craft and waiting for children to come to her. It may be a big step forward for Camille, I wouldn’t dispute that, but perhaps this is revealing a harsh lesson in life.


I think Camille’s mobility and size could be a slight issue as many of the other children like to fly around at 100mph in the playground. This is obviously something that Camille can’t do. Camille does start her growth hormone replacement in a couple of weeks but Camille will take some time gaining her confidence and strength to catch up with her peers. This leads me on to Camille’s growth hormone replacement and our little trip to Addenbrooke’s last week to go shopping. Camille is required to inject once a day and there is a plethora of epi-pens that she could use. The only we could choose was of course to start jabbing ourselves to rate the pain factor. Hayley stepped up to the plate first as I cowered behind my son, using his feeding time as a highly convenient excuse. “Am I doing it?” Hayley asked as she plunged the needle into her torso, a question I am familiar with from my younger days. The nurse confirmed that the needle was in fact “in”, Hayley stood aghast as she had not felt a thing. Knowing this little titbit, I decided to brave it and have a go myself. It really didn’t hurt, not one bit. Anyway, we tried quite a few; some you could feel, some were too bulky and the non-injection pen that works through pressure, stung like Billy-o for quite some time. By the end of it, with our bellys looking like pin cushions, we plumped for the very simple pen that just did what it needed to do. Camille had a little play with it but didn’t offer her own body for the testing process.


I mentioned at the top that Camille’s scan date has arrived. Unfortunately, the date offered up was my first day away with work for a week. This is the only day in the whole of April that a child can have a general anaesthetic for an MRI scan. I couldn’t let Hayley deal with that herself so we’ve decided to reschedule, to May. It’s not ideal but it seemed to be the only solution to our problem. It does of course mean another difficult month for Hayley.


Camille’s weight is also becoming a worry once again. Camille is still living off a diet of MilkyBars and the odd nibble of something like a dry cracker or a bread roll. We haven’t moved forwards in about a year and the clothes that fitted her a year ago look massive on her now. That’s not a good sign for a child; a year is a major period of growth. There is nothing else we can think to do, we have no help, we have no ideas left. We need someone to come in and take control of the situation before Camille becomes ill again, ill due to her diet rather than the cancer.


With all of this going on, a very sore foot and with my current workload, I’m struggling to get the marathon training done. So much so that I have no hope of making my desired target time of 4 hours. I’ve now made the decision to get round, as quickly as I can, but with maximum exposure for Camille’s Appeal. So, I’m going to run in an inflatable sumo outfit, plastered with all things Camille’s Appeal. If you want to sponsor me I would be very grateful and my company will also match it; my JustGiving page is and I need a fair amount more to hit my fundraising target.