keeping healthy

A big challenge with a child on chemo is keeping them healthy.

Chemo hammers the immune system and so even when the child is at home its a struggle to keep them well. It means an odd sort of life where you either see people outside in the park or endlessly check the health of visitors. This particularly applies to other children, who are so prone to coughs and sniffles at this time of year. Any of these minor illnesses, part of a healthy child's growing up, can lead to a chest infection and a couple of weeks in hospital for the boy.

As we are waiting for the operation we are desparate not to have to cancel it because of illness. So, it was with some trepidation that we heard that a child he had seen had come down with a nasty cold. And this was after cancelling two other social visits because someone was ill.

And, during yesterday we got increasingly worried that the boy had got it. He looked peaky, sounded wheezy and needed oxygen support during his nap. We put him to bed bracing ourselves for the time in the early morning that we would have to call an emergency ambulance. It's always early morning - usually between 2am and 3am - for some reason which I assume is related to body cycles.

Today we got away with it. Although not quite well, he's not yet ill enough to need to go to hospital. But it will be plenty of restful play today.

Sleeping like a baby

The boy has never been one for sleeping. He doesn't want to miss out onwhat's going on.

Even before the tumour he was never one for long sleeps, preferring short nights and the minimum of naps during the day. Even now, when being taken upstairs to his cot for an afternoon nap he tries to high dive out of your arms and when put in bed throws himself around the cot, raging at the unfairness of it all. It doesn't seem to matter to him that his cheeks are pale with fatigue and his lips are starting to go a bit blue from lack of oxygen.

Asleep he looks like a Bernini angel, the pale skin, pale lips and lack of hair adding to the effect. Little hands above the head like some sort of cherub pleading to a higher divinity.

When he wakes up he doesn't lie in or in any way gradually adjust to the world. Rather, he goes from lying down asleep to sitting bolt upright in his cot like some sort of Hammer Horror villain waving his arms in a blur of orders - putmyblanketaway, takethemonitoroffmytoe, drawtheblind, turnthelighton, turnthetvon, turnthemilkoff and of course wheresmummy. Which is exactly what he's done now and is very cross I'm not responding fast enough.

Tea for two

So, we now have a date for the first brain operation for the week after next. Lots of butterflies and fear of the future. But in the meantime we have to take each day as it comes (trite as it is, that's all you can do).

But here's a picture of the boy's tea party (note pink teddy on the left has a trachy, like he does)

Hints for parents of children with cancer

These are based on my experience in UK hospitals - yours may be quite different:

- Don't expect anyone to use your name, you are now "Dad" or "Mum" to all medical staff. They will remember your child's name but rarely yours. This is all about the child now.
- Don't overlook the nurses. They can be a great source of advice and support.
- Don't ask for statistics about your child's chances. It doesn't really help.
- Don't let visitors bring flowers. Most wards won't allow them because of the infection risk.
- Don't cry in front of your child. Go somewhere else to do it - we all do. There's usually a room you can go to (parents room or coffee point).
- Don't let hospital be an abnormal part of your child's life. You're going to spend some time in hospital, so make it seem normal for the child. Bring toys or things from home. We have a few set toys that go everywhere with little Ctel, even in emergency ambulances.

- Do check when doctors are prescribing medicines and courses of treatment that they have considered the side effects relevant for your child (for example, oral medicines sometimes come in suspension solutions which can block a feeding tube).
- Do press to stay with your child, especially when they are first admitted or are very ill. Most hospitals will try to find somewhere for you to sleep on the ward. It won't be comfortable but at least you'll be nearby. But if your child is in intensive care, you will have to leave them. They are in good hands.
- Do use nurses' names. Most hate to be called "nurse".
- Do find out the side effects of chemotherapy or other treatment. You will need to be prepared for them and to help your child be prepared.
- Do ask doctors to explain terms you don't understand. Most will slip into jargon without realising it.
- Do find out about your local hospice. They can be great places to stay for a break when your child is out of hospital. They're not only for children at the end of their lives.

A bittersweet day

A great day in some ways. Little Ctel walked for nearly a mile today in his unsteady gait (the tumour has affected his balance). So nice to see him splashing in puddles and holding hands whilst walking down the road. And yet knowing that we are going to put him through surgery which will put a stop to that temporarily and possibly permanently is hard to take. We've made the decision to go for surgery but it doesn't make the worry about whether it is the right decision any less. Having a child with this severity of illness is a life full of difficult choices and few "right" answers.

A word about time

Stephen Hawking may have written a brief history of time but that was probably because he had experienced Hospital Time. In the UK there is British Standard Time and there is Hospital Time. Hospital time is like normal time plus the same again. So, something where they say "I'll be back in ten minutes" might be as long as an hour. Waiting is a big part of being a parent with a sick child. Get used to it.

You'll suffer it because when there's a crisis the medical profession can move very fast. But anything not life-threatening can take an age.

And so we wait

Despite telling the big national hospital (BNH) on Monday that we have decided to go for surgery and them saying they'd let us know on Friday. Friday came and went without any clarity from BNH. In the meantime all we can do is wait and worry as it becomes longer and longer since the boy last had chemo and so the greater the chance the tumour's on the move. Even the welcome return of a bit of fuzziness to his bald head as the hair starts to grow back is tinged with regret.

Ambulances

The boy.

He loves ambulances - just as well since he is so often in one. Children are so adaptable. It doesn't matter how ill he is, he is always excited to see a paramedic and the flashy lights of their vehicle.

In the beginning

Your child has cancer. Words no parent expects to hear. But I did.

The boy was diagnosed in March 2005 at age 15 months with a brain tumour - an Ependymoma to be precise. Apparently, he only had weeks left to live. Now, eighteen months later, he has had brain surgery, a feeding tube permanently put in place in his stomach and a trachaeostomy. He's been through two lots of chemotherapy and radiotherapy.

But the tumour is still there. So, faced with the choice of no giving him any treatment and letting the tumour take its course or trying to get rid of the tumour through two lots of dangerous brain surgery, the wife and I have decided to accept the risks and go for surgery.

This is going to be a record of what happens, for me, for the unknown future.