It's a Normal Life

Apr 11 2010

It's very rare these days that we manage to have a straightforward or normal week, but looking back over the last seven days, it's probably been as normal as we've had in some time.

Saying that, we still have a little girl who has hardly eaten anything orally since July last year, a little girl who has to have anti-sickness medicines three times a day every day of her life and a little girl that gets fed by a pump directing feed into her stomach through a tube. Camille doesn't seem to mind so why should we? She doesn't even seem to mind when the anti-sickness fail to ward off her vomiting, which can happen numerous times in a week.


Camille's life this week has been pretty normal. She spent time with her sister, her mummy, her nannies and her granddads; she also played with her cousins for a while. Even with these normal activities, the undertone of her treatment is always present. Hayley noticed midweek that Camille had started to bruise on her legs more than a normal child; being the stage we are in chemotherapy Hayley made the assumption straight away that the chemotherapy had destroyed her "good" platelet cells. Platelets help the body prevent blood clots and any reduction in levels tends to show as bruises or nose bleeds. I took Camille into hospital on Thursday morning and her bloods came back as expected; platelet levels of 16 (normal levels are above 150). Brain Tumour patients must be kept above 30 so as soon as the platelets arrived from the blood bank, we headed back for a 30 minute transfusion.


Camille has been as happy as any normal child this week, even taking into account her first trip to the dentist. It actually came about by accident. I was always going to take Lucia this week for her first visit but six months ago when I booked the appointment, I didn't even consider Camille for the dentist's chair. Hayley was at work so I took the girls with me en route to my mother's, who was head babysitter for the day. Lucia was not lacking enthusiasm for good oral care as she hopped into the dentist's chair for her first ever check-up. Good teeth? Check! Daddy up next. Poke, prod, tongue out, and tongue in. Smoker? Drinker ?!? "Good, they look pretty healthy". Gone are the days when I lived off Mother's batches of cakes and the dentist use to warm up his drill before I went in knowing that it was going to have some serious action. As I hopped down, Camille walked over like she wanted a go, so she hopped up on my lap and opened wide. It's amazing that it took months for her to trust just one of the doctors to look in her mouth, perhaps it's all becoming normal for her now.


One other break from normality that we have to contend with everyday of the year is the risk of Camille getting any kind of temperature. As I've mentioned before, a temperature of 38°c or more is automatically two days in hospital. Friday night, with a house full of people Camille's inner core decided to slide up to 37.5°c, normally an indication that it's just a matter of time before we're having to pay to watch nothing on TV. Luckily, she came down again and so far has not crept up again; she remains at her normal level.


Hayley and Camille went out on Saturday morning, which gave Lucia and I the opportunity to catch a flick, How to Train your Dragon. It's the first time I've seen a film in 3D since I parped my britches watching Hitchcock's The Birds at Universal some ten years ago. I thought this new film was really good and it was funny to watch Lucia hiding behind her hands as the dragons flew out over the seats in front. My only complaint is the cost of taking a child to see a 3D film; it was over £17.00 for the two of us and that was without the monster bag of popcorn that we had devoured prior to the film starting. I could have cried.


We also had the opportunity this week to speak with a lady who has already taken her son to Florida for Proton Therapy; to say that she was a fan of the clinic would be an understatement. The treatment seems so much more friendly to a child like Camille than the normal Radiotherapy available in this country; her son didn’t experience any pain and was able to explore most of Florida while he was out there as weekends are free. They even got to go to Disney. We must now look to push for our team at Addenbrooke's to secure our place through the NHS.


It's hard not to get political at times like these with our daughters life so reliant on the NHS, our own security being determined by the economy and a General Election just weeks away. Normally I would not bring politics into my blog at all, but as we've discussed above, what is normal? The current incumbents have clearly not been perfect, but going forward would I really want to change anything? A change in politics could well mean severe cuts to the NHS, not front line, but what about the budget for Proton Therapy? We could be facing a 250k bill if there is a Tory majority. How about interest rates? In two years time our fixed rate mortgage comes to an end, we could well be bankrupted in the rates increase like they did in the Nineties. Over the last ten years they've been managed pretty well. Lucia starts school this year, I need to be sure that she's going to get a good start in life, why risk any change to what locally is pretty good. That's my political view over with, but after all it's only a view and my own personal concerns.


Today, we ventured out to the venue where a 70’s night is being held on 5th June for Camille’s Appeal. The venue is perfect and we’re also going to use it for the Christmas Ball this year. It’s a lot better suited for holding an auction and with a huge dance floor, locally produced alcohol and space for surprise extras we are positive that the 70’s night and the Ball will be major successes. We’ll have to go a long way to beat last year’s fundraising figure, but we’ll certainly give it a good go.