So Sleepy
 

So Sleepy

Feb 13 2012

My head is swimming; my eyelids are drooping towards my ruddy cheeks quicker than the train I am travelling on towards London. Yes, the initial two months of a new born baby leave you in no doubt that sleep is an important element to anyone’s day.

 

Jude is now five and a half weeks and so getting to that point where he is in a rhythm with sleep. I can’t argue with that; he is actually very good. However, days like today become extremely difficult when you mix the love of the child with the tasks attributed to a job. The train I’m sitting on left Ipswich at approximately 6.00am, which meant that I had to be up and at ‘em by 5.00am. Jude hung on until 4.00am before needing a feed which I duly accepted, seeing as I was due to be up anyway. I did attempt an early night knowing this would happen, but things went against me. Firstly, my own pathos, as I sat on the sofa with Jude in my arms watching the fantastic Miranda Hart in Call the Midwife (not very manly I know, but I’m well past trying to impress with stories of gratuitous violence). Then came the shower, the shave. I went down stairs to have a quick drink as I had also forgotten to rehydrate for a few hours when I noticed the washing machine had finished and the bottles needed sterilising. By the time my head hit the pillow it was the time I normally go to bed anyway.

In addition to all of these things, I had an added guest in the middle of the night and no, it wasn’t Hayley getting amorous. The chances of that are pretty slim after getting her pregnant for the third time. I’m just lucky she hasn’t come at me with the set of bricks that sit poised near our back door. No, our little friend was of course Camille. 3.36am on the clock and I hear “Mummmmmyyyyyy!” from our top floor. Seeing that Hayley was unshaken by the blood-curdling cry from our middle child, I reluctantly tip-toed up the stairs to have the regularly conversation with her that “Yes, I’ll go and tell Mummy that you want her to huggle your back” and “She’s asleep right now, but don’t worry, I’ll wake her up for you”. Of course I never do. By the time I have climbed back into my own bed, Camille is probably fast asleep once again.

Here lies one of our current biggest issues. Camille is very needy and we (well mainly Hayley) feel that we can’t say “no” to her. Therefore, we are bringing up a little girl who albeit being incredibly sweet and lovely, is very demanding, very emotional and at times extremely selfish (I know all kids can be but Camille has cracked that up a notch or two). This is probably the only thing that Hayley and I disagree on, probably down to the fact that we swept football and political matters under the carpet. Hayley needs to be there for Camille’s every need and in some way feels that she owes it to Camille to oblige her every whim. I on the other hand want to bring Camille up like a normal child; set her boundaries so she knows what is socially acceptable, so that when she is at school or with her peers, she will know how to behave. At the moment I don’t think that she does. Of course that doesn’t mean that I think Hayley is wrong for doing what she is doing, I think any other mother would be the same in our situation; but I do believe that it will cause more harm than good over the long term. As far as I am concerned, we need to consider what Camille is going to be like as a teenager; no more of this negative thought, let’s think about a positive future.

That’s not always easy and the news around us becomes more difficult each week. Having kept in contact with a number of people who we’ve met in hospitals over the years, there’s been some horrible news in recent months. We firstly had the sad news of a little girl In the US who was treated every day just before Camille in Jacksonville. Unfortunately she didn’t make it following the onset of necrosis, a form of gangrene in the brain. Another little boy in Jacksonville also couldn’t be cured from the tumour that he suffered with. We also had the news that a dear little boy who followed us out from Cambridge to Jacksonville has reoccurred. This has hit Hayley quite hard as he is such a lovely little boy and had the character to brighten up the whole of the Proton Therapy institute in a flash. Our thoughts go to him and of course his parents. It is unfair; all of these children, including Camille are under five years old. If you can make sense of it, then you are a more intelligent person than me.

We have to carry on and as I’ve mentioned earlier in this post; we have to think long term and positively. In just a few weeks, Camille will have her scan; the one year scan post treatment. This is such an incredibly important one but for now all we can do is to review her and she looks well. We have had the news this week after some tests at Addenbrooke’s that Camille is going to require growth hormones. It was clear to Hayley and I that this would be the case as Camille has probably grown a centimetre or two in the last three years. This means that Camille will need an injection, every day for, as far as we know, the rest of her life. She’ll get use to it pretty quickly and it is incredibly common after radiotherapy. We’re due to facilitate this through our local surgery in the coming weeks so I’ll update you when she commences this treatment.

The other thing is Camille’s diet. We’ve been waiting for weeks now for Addenbrooke’s to come back to us with a plan to help sort out Camille’s eating habits, which still just consist of a large quantity of MilkyBars (Nestle, if you want to sponsor us we’re up for negotiations). I have now managed to convince Camille to have half a bowl of Weetabix (sponsorship?) in the morning before school but that was such a challenge. The lack of post treatment care is pretty amazing to me, I know Amos feels the same but without budget and resource is hands are tied. That is why what we are doing as Camille’s Appeal is so important. Imagine, having an extra four or five heads working out of Addenbrooke’s, purely focused on helping children like Camille who have been through the treatments that cause the damage in the first place.

Before I sign off and become the token snoring commuter on the train, I just wanted to mention a few charitable things that we’re doing. Firstly, we have a quiz night in Ipswich on Friday week. I’ll be there with a team of goons, I bet you can’t beat us!! Soon after that, Stewart is strapping on his red head band and going to be the Camille’s Appeal paintball Rambo for the day. If you fancy paintballing, please contact stewart@camillesappeal.co.uk. What else? Oh yes, my good wife is taking leave (of her senses) and climbing Ben Newvis with a troupe of women. She’s probably got enough climbers now but is desparetly looking for a 17 seat minibus we can use and two drivers to get them up to the Highlands. There’s lots more; a golf day in June (teams of four people) hosted by Needham Market Football Club, we have the Nightriders cycling through London in the middle of the night and word is out that the famous crooner Johnny Leyton is going to be performing for Camille’s Appeal very soon. Not forgetting our very own Sally who is climbing Kilimanjaro (http://www.justgiving.com/KiliForCamille) in the next few months and my London Marathon run (http://www.justgiving.com/MartinShave2012), we’re going all out to make 2012 a very successful year.