I'm Back, Again

Jan 29 2012

It’s been quite some time since I last posted a blog entry here on the Camille’s Appeal website. In fact, it was Halloween when I last found a few moments to let you know what has been going on in our lives. The truth of it all is that Camille has been doing well and to update you every week with a short paragraph explaining that there is no change, wouldn’t be useful for anyone.


Camille is still doing well and has now progressed to having full days at school following on from her initial half day sessions. Hayley and I thought that she would really struggle with tiredness, but she is actually doing quite well. She is in a hideous mood when she gets home, but after the fun she seems to be having in the classroom, no wonder she is a little glum when she sees our faces. The school have been fantastic and supportive to Camille’s needs; after all of the worries we had when Camille started back in September, we have been nothing but impressed with her progression to date. There are a number of things that we need to work on; in fact they are quite difficult issues we need to overcome. Firstly, Camille’s eating is still pretty bad, with her sole diet consisting of 8-10 MilkyBars a day with an occasional nibble of a cream cracker or possibly even a nibble of ham sandwich. Camille’s weight is a major concern for us and we don’t seem to be getting any support from any of Camille’s shared care hospitals. Camille can eat, she can eat just fine; but something in the back of her mind is making her fearful of new foods. It’s basically a phobia of new food and she is so stubborn that she would starve herself to death rather than eat something she is not comfortable with.


These weight issues also go hand in hand with Camille’s lack of growth in the two and a half years since diagnosis. I think Hayley said that she’d grown a couple of centimetres in that time, nowhere near the normal growth pattern for a two year old. Last week, we had an arduous few hours in a ward at Addenbrooke’s Hospital testing her blood for the growth hormone that she is so clearly lacking. We are yet to get the results of these tests but Hayley and I are bracing ourselves for some horrific scenes, injecting Camille in the buttock on a daily basis.


So, Camille’s eating and size is still worrying us. On top of that, my biggest concern remains around her ability to socialise with her peers. This is not just a unfounded fear that I have, as there is real proof that children having undergone radiotherapy do struggle to master relationships with other people. There were some children in Switzerland (I think) tested over a number of years; and those survivors who had grown up and reached over the age of 18 had shown that not one of them had a boyfriend or girlfriend; not one. Can you imagine that? We’re not even talking about one or two children but at least double figures had shown this interesting result. Camille is showing definite signs of struggle socialising with her classmates. This is such a huge worry for me, one that has been playing on mind for some time. We see it at home as well. Camille simple wants to do craft at the table and has hardly even looked at her Christmas presents. We’ll go to friend’s houses and Camille will be shouting at us that she wants to go home within minutes of arriving. She won’t play with her cousins, she rarely plays with Lucia. I have no idea what to do about this issue either.


The treatment Camille received under the NHS for the brain tumour was incessant, regimented and prolonged. Since treatment ceased we have seen very little interested from the NHS even though you can see the struggles we are experiencing. It’s not that they aren’t aware of it; there is just no provision in the NHS for rehabilitation services post treatment. That is exactly what Amos has planned for the rehabilitation centre that Camille’s Appeal is now in the process of funding. It takes the vision of a man like Amos and the goodwill of charitable donors to get anywhere even though the issues are evident.


The other area that Camille is struggling with a little is physicality. She’s had to learn to walk three times and only started again back in March so it is no surprise that she is way behind her peers. Camille stills wants to be carried everywhere which wasn’t a problem, until at least the arrival of Jude. Yes, earlier this month, Hayley gave birth to our third child and our first little boy. He’s been a lovely little boy and very little trouble (aside from the occasional night time party), but it is testing Camille’s resolve as she has to get use to sharing Mummy’s time. Hayley is still getting back on her feet following the c-section so can’t carry Camille at the moment, but she still doesn’t seem to understand that things have changed a little. I think eventually it will do wonders for Camille having another baby in the house, but that may take a little time. Lucia is fantastic with Jude; she is readily available to help with nappy changes or a simple cuddle to free up Mummy’s or Daddy’s arms.


I’ve made a pledge this week to make sure that I blog at least once every two weeks. I’ve now begun training for the London Marathon in April and with a new job and a new baby as well as a wife who has nothing but decorating on her mind; the next few months could be interesting. I’m still looking to raise a lot more money for the run through JustGiving, so please search for me on there and pledge a few quid for me to haul my flabby bum through the streets of London.