Ependymoma

The Final Comedown

2007-01-15T02:48:00.000-08:00

This is probably the final entry here.

This blog has recorded a short period in time. It has tried to describe as honestly as I can the experience of being a parent of a child with cancer. For better or worse, it defines my life. And I'm sure that I don't always come across as a particularly pleasant or consistent person and probably not even a very good father/husband. But there you go.

It wasn't written for anyone. A vomit in a void. If it was read by people who've never met me. Fine. It was never about saying anything to those who know me. As more people who know me know of it, the more what it says becomes more difficult to write without becoming compromised. So, it's time to stop writing here.

"But nothing in Heaven or Earth
prepared me for this,
THE FINAL COMEDOWN"

Down Down

2007-01-14T13:00:00.000-08:00

There are good days and there are bad days. This was one of the latter.

The boy is fine. His recovery is evidenced by his language. When he is well his vocabulary develops a pace. Lots of new words this weekend. Good to witness. When he is ill it is as if his development is suspended and he can go for some time without learning anything new.

Had to do his monthly trachy change today. First time for me to do it for six months. Scans and operations have taken care of the recent ones. He was very good and didn't complain at all. Accepted having his tapes changed in the middle of the day without demur. Made what is always a stressful experience for us much easier than it might otherwise have been.

Not a good day for me. Not sure why. Everything and nothing. A bit of time to myself last night and this morning found me plunging unexpectedly into blackness. Thought these days happened only every six weeks or so. But in reality it is probably more often than that. Christmas Eve was the last time. Hopefully this will pass like the others. Work should make me snap out of it. And caring for the boy will if it doesn't. Can't be easy for the wife when all sensible suggestions are brusquely rejected.

Chemicrazy

2007-01-13T03:57:00.000-08:00

Whilst the boy started back on chemo yesterday, today was my first time to administer it. Oddly depressing experience.

Felt rather flat this morning. Ended a conversation with a friend rather abruptly. Not in a mood to engage.

Realised somewhat belatedly that it was chemo restarting. There's nothing like the ritual of putting on gloves, putting a needle on the syringe, watching the oily liquid swirl about in an evil manner as you draw it up. Don't forget to add water to the chemo phial to make sure he gets all of it. Give a big flush to avoid damage to the G tube. Throw it all away in the cytotoxic box without getting any on your skin. The irony of having to avoid getting it on my skin while he ingests it is never lost on me.

Found myself ruffling his hair more than usual. All too conscious that it will soon disappear. He's still recovering from the operation and only just starting to get back to his more normal cheerful self. So to make him ill again seems unfair. We may have been here before but that only helps to a limited extent.

Chemical beats

2007-01-12T03:12:00.000-08:00

The boy starts on chemo again today.

He went to see the oncologist yesterday for an assessment ahead of re-starting chemo. He said it was a good trip. He saw a doctor but she did not have a blue hat (i.e. not in theatre gown). But he did see a little ambulance (ambulance car) and a big ambulance. And he went there in a blue car.

Chemo has to be done. But that doesn't make it any more welcome. He will lose his hair. He will start to look waxy. And his risk of chest infections will rise over the next two weeks. Depressing prospect.

His latest game, when I get home, is to make me go to bed. He makes sure I am tucked in. Then he says "na na" (night night), waves and leaves the room. Then he will come back to check on me, putting me back in bed if I have got up. Very sweet.

Bat out of hell

2007-01-08T04:30:00.000-08:00

The boy needed oxygen last night, after several days when he was looking stronger. That and chemo due to start again this week provides a cue for a late night angst session.

The boy has had some good days and slept reasonably well for the last few nights. We were therefore surprised and worried when he needed oxygen when he went to sleep last night. A reasonable amount of oxygen at first.

A late night discussion about the reasons turned into a discussion on how his secretions are not completely under control. This turned into a discussion of whether to delay the start of chemo, due at the end of this week. This turned into his chances of getting through three months of chemo without being hospitalised. This turned into the timing of the next scan if he was ill. This turned into what we would do if the scan was not clear. This turned into whether we should ask about his chances of surviving until he was ten years old. This turned into his chances of surviving at all and how we would cope as parents. Which turned us into miserable parents who didn't sleep much.

No matter how much you try to take each day as it comes, sometimes you can't stop yourself thinking ahead.

Child In Time

2007-01-04T12:53:00.000-08:00

Got home after a wearing day at work. Found the boy sitting on the bottom stair waiting for me. He was clutching a picture he'd painted which he wanted to give to me. And a hug. Bless.

Bathtime

2007-01-04T09:59:00.001-08:00

All the images of bathtime on the adverts are of chubby blonde babies gurgling, giggling and gently splashing in the bath. Mummy holding a fluffy white towel to lift the baby out of the bath and wipe the little blob of foam from baby's cute little button nose. If only!

The boy's not a big fan of baths. Baths mean going to bed. Bed means sleep. Sleep is bad. Ergo baths are bad.

In the evening, he get's a warning that it's bath time soon. He says "no" and holds his hand up in a 'talk to the hand cos the face ain't listening' pose. So I carry a struggling boy up to the bathroom. He is happy to put baby oil in the bath and get soap ready for the bath. But then holds on to the bars of the bathroom cabinet like some kind of political prisoner. I peel his hands off and get him undressed while he tries to kick me whilst lying down. Once undressed he is happy to help get his central line covered and taped up out of the way. But manages to struggle when I put him in the bath. Once in, he remembers that he does like baths after all and happily splashes me or squirts water from his water pistol. He even cleans his teeth without protest.

The protest starts again when I take him out of the bath and start to dry him. They stop when he has his central line unwrapped and his vest put on (to keep the central line and trachy cuff stored out of the way). They start again when he is ready to be taken to his bedroom for his daily trachy tape change.

E v e r y N i g h t.

New Year's Day

2007-01-01T10:41:00.000-08:00

A good start to the year. First trip to the park since the operation.

After several days of rainy, stormy weather, New Year's Day was clear, bright and cheerful. Our neighbourhood is always a bit of a noisy place during festivals. The locals seem to compete as to who can buy the loudest fireworks - turns the area into a bit of a war zone. Last night was no exception.

But today was bright and quiet as the locals slept off their hangovers. I had a bit of lie-in and and then we went to the park - for the first time in a month. As has been the case since we returned from hospital, the boy was not at all keen to go outside. But after a brief struggle, some cajoling and a few epithets from me we got him in shoes, hat, gloves and coat and bundled him out of the house.

He was carried/went in the buggy on the way there. Once at the little animal enclosure he was sufficiently keen to see the rabbits and goats to get out and do a lot of walking around. Sometimes he even forgot himself and let go of Mummy's hand to totter after the animals. Was then happy to go to the cafe and get coffee. He watched some boys kicking a ball and wanted to join in. Remarkably, he was happy to kick his own ball and wander about.

A really positive trip out.

Best Foot Forward

2006-12-31T12:58:00.000-08:00

Trying to make sense of where we have got to with the boy. Really difficult. My brain keeps jumping from thing to thing in an unconnected way.

Bit like rushing around in a fog. Thoughts appear one minute to disappear the next. And I can't seem to keep thoughts in my head for very long. Thoughts which seem fixed in my mind one minute evaporate the next.

Had to write to a cousin in Canada. Made me realise one thing - that it has been a year of two halves.

First half had no treatment for the boy. But equally, no real hope as no treatment was offered. Was easier to manage as I was off work for the first two months. Able to enjoy time with him and to be able to make sense of all that had happened since diagnosis. Then, at the wife's inspired insistance, we asked for the second opinion. And I went back at work. But it was largely a time of going to the park and the shops. Of swings and slides. Of near normality.

The second opinion suggestion of more chemo set up a very different second half of the year. Chemo for three months, two of which ended up being spent in hospital because of chest infections. Then the scan which put showed chemo had done just enough to put surgery back on the table.

The difficult weighing of the pros and cons of the options and the ultimate decision. A time when our local hospital really came through in a big way. But, even with their help, the uncomfortable realisation that I couldn't completely supress the fear that we were making a major mistake given the huge risks we were taking with the boy over two operations. And worse, that I was prepared for him to die rather than have him live with major disabilities. Doesn't say much for me. All the time trying to remain focused on work when at work. Reduced the time to make sense of events, hence the blog in virtual space and withdrawal in real space (except when looking after the boy, of course).

Then we had the difficulty of setting up the brain scan and operations. Only to have the first operation cancelled because of 'something' on the pre-op scan. Then after an anxious week, another scan. But this showed nothing and the op was back on. Such dread waiting for the op. An unreal time. The boy oblivious and happy. Then the operation itself. Successful but hard to handle the waiting whilst it was going on. Whilst we were trying to deal with the aftermath of the operation the news that the second one should be brought forward. Agreed in a daze - notwithstanding the logic behind it.

Trying to help him recover from the first operation with the awareness that there was another round the corner. Him being so cheery after the first few days. So resilient.

The second operation. More waiting. Shock that the surgeon was so positive about the outcome. Then the strain of managing the side effects and trying to understand their severity. And, for the first time, a sustained period when the boy looked unhappy at what he'd been put through. The added cold water of the scan showing 'something' and so more waiting for the next scan at Easter. And more chemo in less than two weeks. He seems happier than he was but hasn't yet regained the cheerfulness he had before that second operation. Will make any decision about further major treatment more difficult. And how to cope at work through it all, especially if things go against him. But I jump ahead. I must not.

I end the year as full of fear and uncertainty as I did last year. This year hasn't aged me as much as last year did. But it has taken its toll. My moods still veer from anger and energy - when I write more and engage more - and melancholia and sloth when I have nothing to say - virtually or in reality.

To end on something more positive - may all your scans be clear ones.

Bizarre Love Triangle

2006-12-30T06:21:00.000-08:00

A day for me and the boy Ctel. Good day but melancholy ending. Can never completely dispell fear of the future.

Thwe wife went to see her parents. Was a last minute thing the previous day. Auntie m had been visiting and since she was going back that way I said why didn't the wife go with her. So she did. Putting the boy to bed solo is always tricky. Such a rare occurrance.But he was happy enough to splash me from the bath. Primly refused to get out of the bath until I gave him time to clean his teeth. With the nurse's help his trachy tapes were changed and he went to bed ok.

He had a good night - for a change. Not too much calling for Mummy or auntie in the morning. Played fine until Granny came in the afternoon. Nice bit of 'normal' time with him. We all went to doctors to collect a prescription but he was very unwilling to do any walking outdoors but happy to race around in the surgery. Very happy when auntie came round. And happy to the point of being hyper when Mummy came home.

Read my emails last night. Brought me back to earth with a bump. Some froma US epenymoma parents group. One about a girl who had died just after Christmas - "now cancer free" her mother wrote. Made my stomach lurch. Another about a boy who's tumours have grown 30% in three weeks (three weeks!). And finally a dx (shorthand for diagnosis) on another email where a child had their tumour completely resected and chemoed only for it to come back on two occasions. Here we are hoping without saying that the boy's next scan will show he is tumour free. Marvellous though that would be, it won't be the end of our worry or possibly his fight. Makes it hard to look positively into next year.

Quattro Stagioni

2006-12-28T06:45:00.000-08:00

Imitation of life

2006-12-26T23:00:00.000-08:00

I'm an ungrateful bastard. Having the boy home for Christmas was what we dreamt of. But having got it, all I can do is count the hours down as each day passes.

Just too tired to enjoy it. Too tired to enjoy much. A struggle to manage his secretions. A struggle to stop him wearing himself out to the detriment of his lungs. A struggle to stop me infecting him. Keep the place tidy. Keep the place clean. Keep food in the house. Keep my temper. Don't sigh. Don't bang things. Don't say you're tired. Too much duty, not enough enjoyment. No doubt there are those who would say that it's a state of mind thing. Perhaps. Or maybe I'm just not a very good parent. Doubly so when I'm tired. Having a sick child can't make up for that.

Silent Night

2006-12-25T12:49:00.000-08:00

What did the wife and I want for Christmas?

The boy at home. And he was.

Despite being up early, he and I had a reasonable morning. Went to auntie's for lunch. Granny came. After being a little shy, the boy behaved himself reasonably well. But oddly, he refused point blank to open his presents whilst we were there. And refused to let us open them for him. But when we got home, he was persuaded to open them. A gentle day, which we all enjoyed. Chemo to come but we'll think about that next year. Just enjoy the present.

Tiny meat

2006-12-24T13:02:00.000-08:00

Lie-in. Do the ironing. Make sausage twists with the boy's help. The tiny excitements of our tiny lives. For these we are grateful.

Christmas happy shopper

2006-12-23T13:04:00.000-08:00

Christmas. Haven't felt like it less since I don't know when. Don't want it. Too soon after the op. Just more hassle. Pressure to be a happy family, for us, for others. So everyone can feel good about themselves. This isn't 'It's a Wonderful Life'.

"I don't mean to sound bitter, cold or cruel, but I am, so that's how it comes out." Bill Hicks

Trainspotting

2006-12-22T23:22:00.000-08:00

Last day at work before Christmas. Thank goodness. Came home early to look after the boy whilst Mummy went out. Took him to auntie's house. He was happy to go but unable to walk more than a few yards. Had to be carried the rest of the way.

In some ways his secretions are better than they were, in that they are not running from his stoma. In other ways, he doesn't seem that much better than at the start of the week and his chest a bit worse. He has needed oxygen for the last couple of nights and his sleep pattern has become erratic. As is mine.

It all feels a bit much at the moment. Rather like being on a fast train. Stations going past but too fast to make sense of before the next station arrives. And there's no getting off the train until it stops - no emergency handle to be pulled.

40 Winks

2006-12-21T13:40:00.000-08:00

Tired. Tired. Tired. Have I said this before? A friend said "You don't look as bad as I thought". Another said "Mate! You look as though you've been punched in both eyes.". Umm... Thanks.

The wife tried to write an online prescription to get us through to New Year. Email failed. Cue some immoderate language and banging of fists on table. The boy wonderfully mimicked Mummy by banging his fists on his legs and pouting, to my amusement, though thankfully without the accompanying language.

Back in the USSR

2006-12-20T15:25:00.000-08:00

First day back at work for me. First day at home for the wife and the boy.

Work all a bit bewildering after two weeks away. Head really hurt by the end of the day. Must focus tomorrow. Remembered to thank everyone for the boy's present.

The boy had a good night's sleep and good day. Looked tired by the evening and happy to watch TV. The wife looks as tired as me.

Last minute panic as the boy needs some oxygen after going to sleep, though not for long. Worrying, as it may be an indication of an infection. But also worrying because the oxygen compressor broke down and we found the cylinder was empty. Risk of leaving the boy without any oxygen support. We should have checked the cylinder but the compressor was unfortunate. After everything that we have gone through it felt like the last thing we needed. So, we had to stay up for the engineer. The risk of leaving it to tomorrow is just to great. Luckily it doesn't take too long before the engineer brought us some cylinders to get us through the night.

Happy birthday

2006-12-19T12:51:00.000-08:00

Birthday boy is three today. Auntie and Granny come over. After an inital tantrum he opened his presents. These included one via courier (a present from my work). Even a couple from us.

Had a welcome lie in. Didn't want to get up. Unlike the boy who had a very early start - 5.40am. He had a nice morning playing with Mummy and was cheerful despite the early start and an unexpected vomit. Got a surprise courier delivery. Not as surprised as the courier when he asked if the receipt could be signed by the addressee and I had to explain it was the boy, and not me.

Auntie and Granny came over for lunch (which auntie had brought). We had a lovely afternoon. Yesterday, the wife had slipped out for an hour as we had no presents for him. She had done him proud with presents and decorations. After lunch he opened presents. But before doing so he had a tantrum as he wanted to watch Fireman Sam. He got a good selection of cards and presents. Particular hits were a baby on a potty (as part of our efforts to potty train him) and a book called panda's pants (anything panda related is bound to be a winner - and it's about pants in the UK, not US, sense). Granny had also kindly made him a birthday cake.

After yesterday's tribulations with his secretions and excessive suctioning we were concerned about how today would go. But, never one to follow a pattern, he was relatively ok with nothing in his trachy cuff. This was great as it allowed him to try to talk for the first time since the op. We were a bit tearful when he said "Mama" and "Dada". It is also good to help him use the muscles in his face to overcome the weakness on the right side. Not an unblemished picture as he tried a sip of water which a few seconds later came shooting out of his trachy. So his swallow is still non-existent.

Back to work tomorrow. Haven't really thought about it. A bit of an unreal quality about it. It has been such a change in the last 24 hours going from hospital to home. And so much has happened that it seems an age since I was normal and went to work.

Are we here?

2006-12-19T01:14:00.000-08:00

Looking back at the risks that we took in going for these operations, there were four possible outcomes:

- operations successful, minor damage
- operations unsuccessful, minor damage
- operations unsuccessful, major damage
- operations successful, major damage

Assume it must be the same for any parent considering neurosurgery for their child. The side effects will vary, as will personal definitions of "minor" and "major". For us, beyond the first, it was difficult to rank the other three. But probaly in the order above. We were worried about successful operations leaving him with a significantly reduced quality of life. That would have felt like putting him in a worse position than before.

At the moment, it would appear that we have avoided the worst possible outcome - for now. In no way did he get off scot free. He has right-sided facial weakness, his right eye can't blink and the vision is uncertain, he can't swallow and as a result cannot speak. But since the outcome of the operations is unclear we don't yet know which ultimate outcome he has achieved. And if the next scan shows that the operations were unsuccessful and he has to have more treatment, then we could still end up with any of the same set of scenarios.

The neurosurgeon is unlikely to do a fourth operation. It is not something they'd choose to do again as it seems that scarring in the brain from each operation makes successive ones more difficult to do. And the neurosurgeon is not clear what she'd be looking for next time, given she took out what she could see.

So, as a preliminary, we are going to have a paper referral to another hospital 200 miles away to look at the options for gamma knife surgery. This would minimise the delay in starting that treatment should we get a bad result from the MRI roulette. I don't know that much about it. But it is a specialised form of radiotherapy that focuses radiation on very small areas. It is quite a new technique. Not much used in the UK. And rarely used on children. And very rarely used on children as young as the boy. It seems to be more in use on children in the US. But that is jumping too far ahead for now.

For now the plan is to get him well. For him to recover over Christmas and the New Year and for him to be reviewed early in January by the oncologist (whom we have warmed to and she to the boy) with a view to starting a new round of chemo. We knew he would have to have chemo again. So his little crop hair will disappear again. And we will be back to having a hermit-like existence to reduce his infection risk. His immune system will take another pasting. It is a bad time of year to have chemo because of the number of coughs and colds around. But there's nothing we can do about it except keep him well enough to start the chemo.

Back home

2006-12-18T12:38:00.000-08:00

The boy had a playful night. Awake for two hours. Luckily, he had a lie-in to compensate. And he was declared fit enough to go home. So home we went. I was not as pleased about it as you might expect. Just another set of hurdles to overcome. And the fear that it won't last.

He has been in the world's coldest cubicle (I exaggerate but not by much). This ward doesn't look as if it was originally designed for cubicles. The air con is very patchy. So some are very warm, others stifling and this one chilly. The boy even asked for a blanket. Most unusual, as he generally sleeps uncovered or with only a sheet.

We have had the pleasure of sampling a number of cubicles on the ward on our many visits. Perhaps the boy could write a column like restaurant critic Michael Winner - "Even though I arrive at 2am with little warning, the sister greeted me warmly. She showed me to cubicle 3 - the best in the ward. Thank goodness. Last time she claimed they were fully booked and had the temerity to ask if I would accept cubicle 4. How dare she. Everyone in the know understands that this horrid, hot cubicle next to the toilets is for the hoi polloi. She offers me milk with antibiotics as an amuse bouche. But frankly I've had better elsewhere."

The boy was awake for two hours in the early morning. Said he wanted to play. The nurse struggled to persuade him to go back to sleep. But at least he had a lie-in. Didn't quite make up for the sleep lost though.

He had a good morning, racing another boy round the ward, each in little cars. Good exercise. He was very good with the doctors (even gave the consultant a hug on Friday - she went quite pink) allowing them to check his chest. They pronounced him fit enough to go home. But we were in no rush, waiting for the wife to arrive. And it took ages to get his medicines delivered. So much stuff to pack. Got home mid-afternoon.

He was clearly tired by the time he got home. Not enough sleep. And too much excitement. He likes hospitals so much so that there was a moment when he said he wanted to stay.

I suppose I'm pleased he's back home. But, it was a lot of hassle to get everything organised, pack up and leave. Sounds dreadfully churlish, given it's birthday tomorrow and it is what we've been aiming for. But there you go. Tiredness ruins everthing. I've only energy to do as little as I absolutely have to. And there's the nagging fear as his secretions rocket after we arrived home that this is the precursor of another infection. Fear we'll be back in hospital soon enough. Our current record is 22hrs. I do hope we can do better than that.

Lazy

2006-12-17T12:45:00.000-08:00

My lie in. Stayed up too late, so didn't really benefit. The boy had a good night and steady day.

Stayed up late last night. Desperate for time to myself. Trying to come to terms with all that has happened. Meant I didn't benefit from the lie in. Last two mornings I have woken up with a swollen lip. I must be chewing it in the night.

Did lots of housework this morning. Need the house to be clean if he is coming home soon. It was pretty grubby after three weeks without a clean. Glad of additional time without having to talk to anyone.

The boy had a good lie in. Playful with Mummy in the morning. Pleased to see me but very disappointed that I was not accompanied by auntie. Said he wanted to give her a hug when she arrived. Which he duely did. Auntie kindly looked after him for a bit, to allow the wife and me to discuss what preparations we needed to do to ensure we are ready for whenever we get home. Don't know what we'd do without auntie's unstinting support. Afternoon spent with the boy doing plenty of racing round the ward in a little car. Good for improving his wasted leg muscles. The wife noted that as he walked before the op he is trying to do so again. Better than the last op, when he hadn't, so was only prepared to crawl for ages.

Very tired when time for bed. He is really objecting to the twice daily trachy cuff deflation and inflation. Having it inflated so much must be uncomfortable.

Tired of singing trouble

2006-12-16T12:36:00.000-08:00

The boy had a good night. That it was one of his home care nurses really helps (him and us). He had a quiet day. But, much as predicted, staffing shortages at the local hospital means the extra support promised is not happening today. We are finding it hard not to feel resentful when we begin to fray towards the end of the day.

Slow start to the day by the boy. Happy to have a neb after waking. In no hurry to get up. Then happy to play in bed. Eventually, got up and played with water in the sink. Did go out on the ward but very clingy.

Secretions no better. Both secretions coming up and going down are wet and copious. Was relieved when the wife arrived to have someone with whom to share the load. Discussed it with doctors since the position is not getting any better. They will review the drugs tomorrow. We need some measure of contol before the chemo starts. Otherwise he will give himself chest infections and be hospitalised.

Slightly lost my cool with the nurse when it turned out that they had not ordered extra suction catheters for him. We've used up the ward's supply. They had to hunt for more elsewhere. Did apologise but it still grates.

Bit better afternoon. Played out of the room. Helped by Mummy and then auntie turning up. He even made tea for auntie and the pandas. When auntie left he looked very tired but refused to sleep. At least he had some quiet time in the cubicle.

The wife and I are increasingle frayed. Limping through the last few hours to his bed time. Just want some rest. Don't know how we'd cope if we didn't have the night nurses.

Red barchetta

2006-12-15T12:45:00.000-08:00

My lie in. Hard to get myself going. Completely weary. The boy did not lie in. Also tired. Smooth transfer to local hospital. The boy missed the excitement of the ambulance journey by sleeping through it. Local hospital gave us warm welcome.

After my lie in I found it so hard to get going (the wife found much the same yesterday). Getting ready a real effort of will. As if the extra sleep reminded me of the sleep deficit.

The boy playful, if tired. Had refused to go to sleep until very late. And got up early. He had been playing in the little outside area. Then he and I tottered off to the neuro ward to say goodbye. Well, I said goodbye, he wanted to play with the red and yellow car.

Met the parent of a girl who had been on the ward with the boy previously. A truely upsetting experience. They have been having a terrible time. Their child is very, very ill. So shocking after we saw her walk in only a few weeks ago. Doctors are very gloomy about the prospects. They have asked the dreaded "If your child arrests do you want us to resuscitate?" I have no idea what we would say. There's little you can say to parents in that situation. You perfectly understand what they are going through but nothing you say can really help. So, you say don't give up hope and other platitudes we tell ourselves. Felt utterly inadequate.

Ambulance came on time for the transfer. Lovely nurse who has looked after him many times before came with us. Said our goodbyes to the ward and thanked them for letting us 'squat' with them for a few days.

Managed to transfer a sleeping boy from ambulance stretcher to the cubicle bed. They seemed pleased to see him. Have done the usual of giving his history to the ward doctor and his care routine to the nurse. Felt a bit of a sham really since it's us who have to be with him and do cares. But it is not a problem when he is so cheerful. He was soon racing round the ward in a little red car.

It may be tempting fate, but the consultant says we may be able to go home on Monday if he has a good weekend. But secretions up considerably today, so we're not holding our breath.

Look up

2006-12-14T12:56:00.000-08:00

The boy had his first good night's sleep. But after yesterday's exertions only wanted to lie quietly in the morning. Did get out of bed in the afternoon but not really wanting to walk. Looks like our local will take us from tomorrow. Whether the extra support they promised will materialise remains to be seen. We're not holding our breath.

One thing I'd forgotten about being in a cubicle with a trachy child who needs constant monitoring is the difficulty of going to the toilet. [Sensitive readers should skip the next bit] This is in the sense that you need to listen for when the boy needs suctioning. So, you have to keep the door open to hear what's going on with his trachy. And you have to talk to him to stop him getting upset as this will make him cough. But, even so, you may have to dash out to suction. A serious problem when he is chesty. This is not so bad in the current cubicle, where the toilet door faces into the room. It was more embarassing in the other ward as the door faces the corridor. And it is very difficult in the local hospital where the cubicles have no toilet. So you wait for him to have his next dose of medicine and then ask the nurse to stay with him until you return. The small indignities of life with a sick child.

Morning spent quietly, playing in bed. Afternoon, auntie and pandas came. He wanted to get out of bed and make biscuits for auntie (with playdoh). Then we took him to the hospital party. Really lovely event but too much for him - big scary animals and big crowd - so only stayed for ten minutes. But at least he got a nice teddy as a present.

Just when he was looking at his most tired opthalmology rang - typical. Rushed him there. He cooperated with the opthalmologist at first but soon stopped. Inevitably this made assessment rather difficult but he does have problems with his right eye. His left one is ok but not great. Then she put some drops in his eye and said come back in twenty minutes. Went back only to find her with another patient. An hour later we were still waiting. But he had a trachy review so the time wasn't wasted. The ward sister made sure the opthalmolgist came up to complete the examination. We've got to be extra careful to protect the right eye as it is not producing enough tears. There's a risk of drying out causing permanent damage. She was good but a classic example of using technical terms which confuse tired parents not clarify - he has "anasthesia" of the eye. Huh!? Oh, he has no feeling in the eye. There may be "inter-cranial hypertension". Huh!? Oh, there may be swelling in the brain.

Looks like our local hospital are prepared to have him. Probably tomorrow. They came over for a meeting this morning. Went much as expected: Very sorry... Wanted to provide support.. Difficult at this time of year... Staffing issues... Whatever. At least we weren't banking on it. We are too weary, too conscious of not pushing our luck with the Big National Hospital and too keen to go home to argue. We will take whatever the local offers, provided they agree to let him go home early next week (on the assumption that he continues to make steady progress). We could make a big fuss about it but we will need them in future. It's not like we can take him elsewhere in an emergency and they do try.

Plateau (of normality)

2006-12-13T13:02:00.000-08:00

Despite getting to bed very late, the boy didn't sleep much last night. But having risen from his bed yesterday evening, is continuing to make progress. His best day yet. Our stay in hospital is still uncertain as negotiations continue between the Big National Hospital and our local hospital.

The boy didn't go to sleep until late because of last night's pantomime. But was up fairly early. Having found he is able to get out of bed without too much pain, he has spent most the day in the play room. He has been playing with plasticine and water. He has tried more assisted walking which is great. He is back to getting very upset at any suggestion that he should go back to bed to rest.

Saliva from his stoma is still an issue and he has been reviewed by speech and language. We hope he will see an opthalmologist tomorrow (but they said that yesterday) to assess the sight in his right eye.

We are squatting on the other ward for tonight. They are being very understanding - for the time being. But the Big National Hospital are (understandably) reviewing this on a daily basis and remain locked in negotiations with our local hospital about a transfer. This means we have to do all his care during the day. Thw wife and I are pretty exhausted following yesterday's messing about. The local hospital are sending a representative over for a meeting with us and the ward tomorrow morning. Should be interesting.

Man on the moon

2006-12-12T15:23:00.000-08:00

The boy had an ok night. But no more than that. Less good news is that his secretions are still flowing from his stoma. And we were told we would have to leave the nice cubicle to go back in the noisy bay. Then it all got a bit silly.

The boy slept most of the night but not resful sleep. Was awake when I took over at 7.30am. Having a neb. His chest sounds quite dry, not surprising in an air conditioned building.

The night shift said that we had to leave the cubicle to return to the bay. It was unwelcome news. It is quieter for him in a cubicle and he can have his own night nurses. These have a calming effect on him (and us). Apparently, there's another child with a trachy coming. A first for us. Allegedly, costs are the issue, as it is more cost efficient for them to have two trachies monitored together rather than keep little Ctel specialed in a cubicle at night. Originally, they were saying he would be here for two weeks. Now we will be lucky to be here a week. But this assumes our local hospital can get their act together. They have good intentions, are nice people but don't always deliver what they promise (notwithstanding that it was agreed at a meeting of nine people before the op).

The wife says we want the moon. It is true that whatever happens to the boy, we bank any progress and then try to get his other issues resolved. So, we have banked the operation and are focusing on how to help him overcome the side effects. It is part of dealing with each day as it happens and perhaps a bit of the sick kid equivalent of pushy parents making their children take Japanese classes (or whatever is fashionable this week).

He was still relucant to sit up for anything other than short periods. He still has saliva coming from nose and stoma. But his chest seems much better and he is off the oxygen (even when asleep). And then after I'd been griping that he wasn't trying to be active, I offered him the chance to be carried into the corridor. And he leapt at it. Then he pointed to the play room. Then he volunteered to sit in a chair. The wife went off to take a call. So, he decided he wanted to find her and holding both my hands took a few tottering steps. Says nothing about his balance but is a major achievement.

Then the silliness started. We heard that our local hospital can't take him before Christmas. Not enough staff. We go into the bay. Then they say he can't stay as they need the bed. He may have to go to another ward. But that ward may not have the nursing cover. We spend the next three hours getting conflicting messages in a grotesque pantomine. Yes, he will be staying. Oh no, he won't. Yes, he will. No, he won't. Finally, yes he will but there's no nurses. Eventually at nearly 10pm, yes there are. In the meantime we've been trying to keep him awake. And so we do decamp to the other ward. And there are nurses but only for tonight. And I eventuallly leave at 10.30pm. Who knows what will happen tomorrow, let alone tomorrow night.

To end on a more positive note. Not only has the boy's picture been used as a Christmas card by the radio statiion but one of the staff said they saw it as a poster at a bus stop. Bless.

All the right friends

2006-12-11T14:15:00.000-08:00

More of the same. Short periods when the boy is active and much longer periods when he is not.

After I'd finished last night's post, there was a knock on the door. It was a man who lives nearby (the boy calls him the man on the round and round stairs) who said he knew the boy was having an operation and gave me a present for him. So kind of him. I was quite speechless.

The boy had a reasonable night. He is still having saliva pouring from nose and stoma. And when we deflate the trachy cuff there is a vast reservoir that has to be caught before it goes into his lungs. The effort of coughing it all up makes him sick. All over me, as he was on my lap. The medication to control it is currently not working. It has been increased.

All in all, he is not doing too badly. He hasn't currently had all the dire side effects that we feared. His brain functions seem broadly ok. He has facial weakness, loss of swallow and now loss of blink in his right eye. Both of the latter two are serious if permanent. The swallow will put his lungs/breathing at significant risk. The lack of blinking gives a risk of eye damage, perhaps longer term blindness. This eye had problems previously and the new problems won't help.

Things that remain to be tested are hearing and balance. The loss of hearing in one ear was a high risk of the operation (he already had some hearing loss before the operation). We won't know about his balance for a while yet as he will need to recover strength before we try out sitting up for long periods and then walking.

He has been approved by the doctors as stable enough for a cubicle this morning. This should help his sleeping as it will be quieter. But now we have the problem of ensuring nursing cover for him tonight and going forward. This was eventually resolved late afternoon.

Had another visit from auntie and the pandas. Quite brought a tear to my eye as he spontaneously sat up to greet them with genuine enthusiasm and excitement. Unfortunately it was all a bit much and he was very sick a short while later. He spent the rest of their visit lying down.

After auntie left he agreed to have the TV off, the lights dimmed and to have a nap. Something he would violently object to if he was feeling at all recovered.

He had a quiet afternoon. Got a visit from one of his night nurses, which he was pleased about. The periods in which he is prepared to play are increasing slowly. But he still can't sit up for long without tiring.

As it was one of his night nurses this evening (not the same one that visited earlier), he was prepared for us to leave him quite quickly - before 9pm. With some trepidation the wife and I decided to come home for the first time since the op. I'll be back for 7.30am tomorrow while the wife has a much needed and deserved lie in.

Find the river

2006-12-10T13:12:00.000-08:00

The boy had a broken night. He is very tired. Still preferring to lie in bed to playing all day. secretions down but loss of swallow function. At least he is still stable.

The wife and my reaction to the news from the brain scan was curiously muted. We didn't discuss it after the neurosurgeon left. And we didn't even discuss it when the boy had gone to sleep. Partly because we are tired from caring for him. Partly because his chest infection gives us more immediate things to worry about. And partly because it may be the news we've always dreamt of but never thought we'd hear. But also because it's not the clear-cut, black and white news that would allow us to be properly happy. It doesn't feel as if the sword of Damocles has been removed quite yet. It would be awful to allow ourselves to get our hopes up only to have them dashed. His prospects may have improved but we are still in the waiting game for the next MRI.

We are very grateful for the treatment the boy has received. The neurosurgeon is dedicated to a point that, if the boy wasn't benefitting from it, I'd be tempted to call unhealthy. She came in on what must have been her weekend off to review his scan and give us the news, rather than waiting for Monday. The nursing staff are excellent and dedicated (even the one that managed to upset us yesterday). And goodness knows what the NHS would do without Antipodean nurses.

It was very noisy in the bay last night. The two babies in there were unsettled. One or other was crying for most of the night. As a result, the boy only seems to have slept for short periods. He didn't lie in this morning. He looks very weary. He did want to read books for a while. But then, as his coughing increased, just wanted to lie quietly. We are not used to this. He has been cheerful and playful through most of his other illnesses. He eventually drifted off to sleep mid-morning, only to wake after 40 minutes to have another coughing session and be sick.

The boy sleeps with little panda. The green tube attached to his trachy is for oxygen. The bay is hot, so there's no point in him wearing pyjamas.

This afternoon we had a visit from the physio. She said that the volume and looseness of the secretions were excessive for a chest infection. We tried out our theory that he is having problems controlling his saliva and this is causing it. We had tried to say this yesterday to a number of the medical staff but as there was no pooling evident in his mouth they rather dismissed it. She took it back to the ward doctor and they are now taking it seriously. They do often say "you know him best" but don't always follow through.

We inflated his cuff to near maximum and, as if by magic, the secretions stopped. Good news for his chest. But bad news otherwise. With nowhere to go, the saliva is pouring out of his trachy stoma (the hole in his neck that the trachy goes in) and his nose. His mouth is firmly clamped shut and we cannot get him to open it. We have therefore spent the time mopping his nose as saliva streams out and mopped his chest as a little river runs down to his belly button. Nice.

We cannot be certain if this is a temporary feature related to the slackness in his face, temporary swelling in his brain or something permanent as a result of the surgery. This is unlikely to become clear for some time, perhaps months. In the meantime he will not be able to say anything and his infection risk will increase. If long term this could have very serious consequences for permanent weakening of his lungs. He has a patch to reduce his saliva but this will take a little while to work.

He was happy to receive an afternoon visit from auntie and the pandas. He let auntie make them tea to share. But he was too tired to really play with them or auntie. When he slept, auntie and the pandas left. And the wife and I took advantage of a kind offer from a nurse to watch the boy and had a rare hour together. We talked a bit about the scan but not much. Until we have the next scan there is little to be gained from speculating about the various "what ifs".

This evening the boy received a visit from one of the nurses that looks after him at home. The one he plays (up) with most. He was pleased to see her. She had very kindly brought some food for the wife and me and watched him while we bolted down the food. We eat such rubbish meals when he's in hospital that home-cooked food was a godsend.

It is hard to look at the railway map of scars across the back of his head without some feeling of guilt for what we have put him through. Whatever the logical reasons might be. It is harder to remain logical and positive when we are so tired. We therefore decided that as he was relatively stable and we are both exhausted that one of us would stay with him and the other would go home. Normally, I'd insist it was the wife but I gratefully accepted her offer for it to be me. The cumulative effect of two operations takes its toll on us all.

This time we have seen a range of parental reactions to their children's illness. Most. like us, stay with their children and do their best, however inadequate it feels. But some seem to find it more difficult to manage. They come to visit their child for a few hours like a sick relative and then leave. Others hardly come at all, leaving all the care to one parent. As if they cannot cope with their child not being what they were before diagnosis. In some strange way the wife and I envy their ability to walk away but we realise, in practice, we couldn't.

It is hard to believe that we have been in hospital for five days. It seems oddly timeless and endless.

Eroica

2006-12-09T13:13:00.000-08:00

After a pretty scary few hours, the boy had a good night. But today he is exhausted from the effort of trying to keep his lungs clear. We are likewise knackered.

Having re-read last night's post, I was tempted to delete it. But that's how it was, so it stays.

We had spent the whole day in a state of high anxiety. Anxious because he was so obviously unwell and needing constant attention to maintain his oxygen levels, even with lots of oxygen support (4l+). Anxious because there was no decision from or sight of the anaesthetists about whether they would give him the general anaesthetic necessary for the brain scan. One finally came and saw him mid-afternoon only to decide he could not decide. It was to go to a higher authority, whom we never saw. By then we were very uncertain it was safe for him to have any treatment that could further depress his ability to clear his lungs. But they decided to go ahead and we nervously acquiesed.

When the boy came back from his brain scan he was very pale, cool to the touch but perkier than he had been all day. He even did a bit of drawing using his wrong hand and looking at a book for the first time. The boy likes to confound expectations.

As it was late, we decided he needed to be settled to sleep. As this was less likely to happen with the wife around she went off to get something to eat. The boy was incandescent with rage. I told him Mummy had gone to sleep. He told me no. She needed to be awake. He then refused to have anything to do with me. When he had finished sulking, he did engage but only to ask for a neb. But to show he was still cross, refused to hold my hand or to close his eyes.

Over the next hour or so his colour returned. Then a pleasant pinkness turned to a flush and then angry redness. And his heart rate climbed to levels that at home would have him hospitalised. It was touch and go for a couple of hours but he then stabilised and settled to sleep. He then slept all night. I had a less good night. Bad dreams including dreaming that the alarm had gone off and I had put him in danger from oversleeping.

Saturday, he had a relatively perky morning. Sat up and played with magnetic book and pointed to items in a storybook. This was not only good to see but also good for his chest infection as it dislodged the fluid in his lungs, as did a later visit by the physio. But, for us, meant another exhausting morning furiously suctioning. The almost constant coughing wore him out by lunchtime. And mid-afternoon he finally fell asleep needing decreasingly less and less oxygen. He still needs some but a trickle compared to earlier in the day.

When we woke him up it was a re-run of the morning. Copious secretions. Catheter after catheter. This infection is a wet not a gloopy one. This went on for a more than two hours. At the end of which we were all shattered. He had another visit from the physio, which helped again. Tonight, I've left the wife to get him to sleep, which shouldn't take long in his current worn out state.

Had a visit from the surgeon in the evening. She says that his scan looks good. There is something on the scan but she thinks it may be scarring from the operation last month. We have to hope so. We will have to wait for his next three month scan to know for sure. But so far so good. For now he is stable and for that we are grateful.

Human NRG

2006-12-08T14:59:00.000-08:00

You want heart-warming tales of courage in the face of adversity, triumph against the odds or optimistic faith rewarded. Look somwhere else.

Some parents maintain an eternally optimistic outlook in the face of terrific trials (Sarah Bickle I salute you). The wife is like that most of the time. My glass is always half-empty. And when I'm tired, like now, the glass is cracked and dirty as well.

Tiredness, the curse of new parents, is omnipresent when you've got a seriously ill child and never more so than whenever the boy is in hospital. It's no different this time. It's a pretty crap life with a seemingly endless series of trials to be overcome. You never celebrate sucess (as people who want a good kicking like to say) as the next trial is upon you before you've time to think and the next half a dozen are easily visible in the distance.

You want black and white. You want right and wrong answers. You get shades of grey and no clear cut answers. You need to be a statistician to properly compute the relative risks of all decisions. Instead of doing it for strategies for the fourth down (or whatever was recently in the news from America), economists should give us a formula for treatment options for sick kids.

Which is to say that after hours of waiting for the anaesthetists to decide one way or another, the risk of not doing the brain scan was considered to outweigh the risk of doing the scan and the chest infection turning into pneumonia and intubation in intensive care. Nevertheless, they did take pains to tell us that the anaesthetic could leave him the same or make him worse. Yet another Hobson's choice.

The scan happened very late afternoon. The boy was pretty perky when he came back. But late at night when I left him, his heart rate was on the climb. Doesn't bode well for the night.

Oxygen restriction

2006-12-08T07:15:00.000-08:00

We had a better night. Exhaustion finally allowing us to get some rest. Not such a good night for the boy. He has a chest infection. The brain scan we need to understand the success or otherwise of surgery may well not happen. Weather is miserable and so are we three.

He desatted again in the early morning. X-ray shows something clouding his right lung. The dreaded chest infection. He's on antibiotics and extra potassium. We have to hope that he does get a slot on the brain scan list for this afternoon and is considered fit enough for a general anaesthetic. The anaesthetist will opine later. Whatever, the combination of an infection and a possible general anaesthetic is going to significantly slow his recovery or even put it sharply into reverse.

He's had more physio and some sitting up with Mummy but this wore him out. After twenty minutes he wanted to lie back in bed. He was cheerful for a little while this morning. Exploring toys with one hand. He won't use the other as it has the canula in it. He will keep any limb with a canula immobile.

But the moving around dislodged a lot of fluid in his lungs which meant an hour of one suction catheter after another. We have used the whole ward's supply of that size catheters. Someone had to go on the hunt for more from other wards. It is exhausting work doing almost constant suctioning. Open catheter. Attach catheter. Check suction length. Remove oxygen mask. Suction twice. Replace oxygen mask before his oxygen level drops too much. Repeat every two minutes for next hour. He is worn out from having to cough so much. Even a visit from auntie and the pandas did not really help cheer him up.

Anaesthetists are currently sucking their teeth about brain scan. Under normal circumstances they probably wouldn't choose to go ahead. But if we don't do it today the opportunity may be lost. But in his weakened state, if they do next stop may be intensive care. Decisions. Decisions.

Half a world away

2006-12-07T09:45:00.000-08:00

The boy has had a mixed day. No further evidence of surgery-related side effects. But he is weak and vulnerable, especially his chest. He is needing quite a lot of oxygen.

He had a quiet morning. Mostly awake and demanding constant nebs. Unwilling to raise his head, sit up or otherwise move. In the morning he had physio to help him loosen and cough up secretions on his chest. This seemed to work pretty well but wore him out.

In the afternoon he desatted (the oxygen in his blood went dangerously low) and we couldn't help him to improve. We had a rather tense hour or more when nothing was seeming to help. But he had more physio which helped again. This operation, so soon after the last one, has taken its toll. He needs quite a lot of oxygen to keep him stable.

We hope that he can remain stable overnight and be well enough for the brain scan. We hope this will take place tomorrow afternoon, provided that the anaesthetists pronounce him fit enough and there is a slot available. This is one time when we need him not to have one of his regular chest infections. In this state he could well end up in intensive if he does.

If he can get through the next thirty-six hours ok he ought to then start to make a slow recovery. But who knows what tomorrow will bring. As ever, we wait and hope.

The wife and I are looking pretty ropey. More bags than Tetleys. The two operations have taken their toll on us as well. It's the parents room again. Welcome as it is, it's not a great place to rest. Provided the boy lets us!

Morning has broken

2006-12-07T01:51:00.000-08:00

The boy looks very mournful this morning. His serious expression accentuated by the slackness in his face and the post-op puffiness. But he had a good night all things considered. We did not.

Although he is in the high dependency bay, he is in a different bed to last time. There is no room to sleep beside him. So were on the fold out sofa in the parents' room close by. Although we were very tired, it was hard to unwind sufficiently to sleep. Too much adrenalin in the system. And no way to burn it off. Had a bit of the shakes. Probably, a combination of wanting to believe the op was successful and a fear that the MRI will show it was not - if it does show any residual tumour they may operate again in a few days time. A pretty dismal prospect.

As for his physical well-being. Yesterday he was the usual post-op pin cushion of tubes and lines. He had a canula in one foot, a canula in one hand and an arterial line in the other foot. Plus the usual sats and heart monitors. He's already had the arterial line removed. And we hope he has both canulas removed later on today. He is still rather lethargic from the op and the morphine. But I got a crooked half-smile when playing Boo! At the moment he just wants his nebs and to hold Mummy's hand.

A better life

2006-12-06T09:40:00.000-08:00

It went better than I expected. So said the surgeon. But we won't know for sure until he has his brain scan. Side effects unclear but pronounced weakness in right side of his face. We are just so relieved that he has come through this relatively intact to care about anything else at the moment.

It's always difficult to know when to go back to the hospital when the boy is having an operation or other procedure. You get a guide from the nurses but understandably its difficult to be precise. If you come back too early and then have to wait on the ward this adds to the tension. You sit there on uncomfortable chairs drinking too much coffee and jumping every time the ward phone rings in case it's a call from the recovery room. But you don't want to get back after they've gone to recovery to collect him as you feel a neglectful parent. The nurses always make soothing noises but you feel a heel, as if a call from Social Services is just around the corner.

Anyhow, after five hours of eating and desultory shopping we agreed to go back to the hospital. Mostly on my insistence. Its usually me that cracks and wants to go back. It's not like there's you can go in theatre and stand there advising the surgeon "A little bit to the left with the scalpel please". But it makes me feel psychologically better. But on this occasion I got it right. We had barely hung up our coats when the call came from recovery that he was ready.

Recovery is an odd place. All or nothing a nurse said. It can be a place of calm where they monitor patients after theatre. And you can hold his hand and give thanks that he's come through it ok. And the nurses glide around efficiently, constantly checking the various lines and monitors. Or it can be like walking in on a symphony of monitor alarms accompanying a child soloist giving it his all. Today was big production opera with international standard soloist and full chorus. Quite Wagnerian. In other words, noisy organised chaos.

We were shocked to be met by the surgeon. As the operation was on the shorter side, we feared she hadn't been able to do what she wanted and get all the tumour. But since she was prepared to discuss it in the doorway we figured it wasn't truely disastrous news. She said that it had gone better than she expected. She thought that she may have got all the tumour. But the scan tomorrow or Friday will make things clearer. She didn't cut any nerves that she knew about. But she did have to "tug really quite hard on one of the facial nerves. It stretched but didn't snap" I was left decidedly queasy at what was, for me, too much information. She said that the stretching had caused some asymmetry to the right side of his face. Might be permanent, might not. Would take three to six months to be clear.

She cheerfully announced that he was not in any pain. He had told her so himself. We were stunned. Last time he had barely been conscious for the best part of twenty four hours. But he was indeed awake. Wanted Mummy and to hold her hand. Wanted the bed raised. Wanted to have a nebuliser. Was tetchy and bossy for about an hour. But when we got him back to the ward he drifted off to sleep. He does have a pronounced slackness to the right side of his face. A bit like having had an injection in the jaw for dental work. He is dribbling a bit from the droop in his mouth. But he can move arms and legs, though not clear how well or what effect there has been on his already precarious balance. But given what could have happened so far, so good. But the next fourty eight hours are critical.

The thing about an operation is that the initial situation can be misleading and things can change quite drastically over the first fourty eight hours. This happened after his first operation and he ended up in intensive care on a ventilator. We were given a sobering reminder of this on the way back to the hospital today. We met a parent of a child who had been admitted just after the boy's operation three weeks ago. Like us when we were first told of the tumour they were in shock. Their child went for surgery the day we left to go home. It had seemed to go ok with the child sitting up and talking after the operation. But then things had deteriorated. She had developed fluid on the lungs, had to go to intensive care for ventiltion. Had seemed to get a bit better. Had bleeding in the brain and a stroke. Had airway problems. Was still in intensive care after over two weeks and might have to have a trachy fitted. And not all the tumour's out. Let's hope the boy fares better than that.

Mrs Ctel and I are still in shock from the operation. Such acute tension. Worrying about how we would deal with a range of downsides. It will take a while to take in what we know about how it went and what his side effects really are. But as of now we are better off than we thought we'd be. And for that we give thanks.

(Un)comfortably Numb

2006-12-06T04:48:00.000-08:00

Operation day is here again. He's gone to theatre again. And the wife and I are sitting in a cafe making brittle conversation again. We're in for a long wait.

The wife said she found coming in to the Big National Hospital yesterday harder than last time. The surgeon went through the risks of the operation and the side effects in her clear direct manner. They are so much worse than the last operation that the wife found it hard to take. She had a cry before returning to the boy. Perhaps I should have come with her rather than finishing up at work. But we agreed to save up what remains of my leave. And its not as if we haven't been told all this several times before. Just the proximity is different.

Didn't sleep very well. Lots of dreams. Not about the operation specifically, more about work and life. All with the themes of anxiety and justifying myself. Trying to justify what we are putting him through. We've discussed it endlessly but it doesn't really help. We still might be condemning him to serious side effects and the tumour still there. And the unexplored, what would we do if he died.

Early start. Last minute packing to be done, shave and make tea for the wife (not a morning person). The night nurse got the boy dressed and gave him a cuddle before leaving. He really likes her, especially as they play together. Too much so sometimes, as happened last night. So he was asleep late and up early. Made him a bit clingy, especially to the wife.

Got to the ward on time. Met by a nurse who looked after him a lot following his first operation. She is very good and very nice. The boy played on the ward until it was time to go to theatre. The wife carried him and held him while he had the anaesthetic. Its surprising how different unconscious looks from asleep. More like death. Never a comforting thought.

Another four or five hours before he comes back to the ward. Time passes so quickly when you don't want it to pass and so slowly when you do. Odd how little emotion we feel whilst waiting. A bit of adrenalin but otherwise just numb.

Walk unafraid

2006-12-05T06:19:00.000-08:00

Preparations for the op started today.

The boy is off to the hospital to see the doctors in blue hats, ahead of the op tomorrow morning. He is also going to get his prize from the radio station for his painting and to have his photo taken. Let's hope it's something he likes and they let him see the pictures they take. He won't be pleased if they don't.

World in motion

2006-12-04T01:22:00.000-08:00

Approaching op makes life tense.

Sweet moment yesterday. The boy tried to use the mobile phone. He wanted to speak to the pandas in America. The wife pretended to speak to chi chi's granny to find out how they were. The boy was so excited to be able to say hello. He told them that he wanted to give them and auntie a hug when they returned. And to make them a cup of tea. The wife was able to check that they were having enough bamboo to eat. But the tea in America was not very good and they would be home soon. He was happy to say goodbye.

Less good was mounting tension meant the wife and I had a falling out last night. It was over something trivial. But it spoilt the evening, ruined the possibility of a peaceful night's sleep and left us miserable. The hidden part of having a sick child is the strain it puts on our relationship.

Feeling Gravity's Pull

2006-12-03T03:28:00.000-08:00

Last Saturday before the second op. A lovely microcosm of yesterday's "It's a Sin" post.

The boy had a short lie in. Just long enough for me to have coffee and finish off the blog. We watched TV for a while. I wanted him to use the potty. He did not. I lost.

Came downstairs. He directed me washing up and made me coffee. I got him to help me with some cooking for the first time. He stood on a little chair at the worktop as I made scrambled eggs and toast. He was very suspicious. I showed him breaking the eggs and whisking them. I tried to get him to pour in milk like he does for coffee. But he was only prepared for me to hold the milk and him to move my hand. May be another time.

The weather started to brighten, so he agreed to go out to the shops on the promise of buying the little milk with a flower on it (his own sign for a branded milk carton). But first we went to the post office to collect a parcel for me. When we went past the milk shop, he was furious and threw himself on the pavement, crying bitterly. I said we would come back but to no avail. So I had to carry him until he was calm enough to strap into the buggy.

He cheered up no end when we got to the post office depot as there were lots of post office vans. He was so excited pointing them all out to me - as if I couldn't see them. While we waited in the queue (outside) we tried counting them. He has just started to grasp counting but it's slow progress: "un" (one), "oo" (two), "ee" (three) and "or" (four) is as far as we get at the moment.

We did go back to the milk shop, where he wanted to get out of the buggy so we could share carrying the shopping basket. We did get the little milk. I didn't know what bread to get and was crouching down. He mimicked me squating down and rubbing his chin as if thinking.

We then went to a kids' clothes shop which has a little car ride in it. It was broken. But that was of no consequence. He happily played in it for half an hour. Sitting and driving it. Then getting out to inspect it. And so on. He played a bit with other kids, though said he was a little bit frightened of them. I was bored and wanted to leave. I told him to have a last go. Which he agreed. But when we left it was tantrum central again. Tears, throwing himself on the floor and beating his head with his hands. We left the shop, with what felt like the eyes of several mothers burning holes in my back.

He was tired and wanted to go home to Mummy. But at the last minute changed his mind when I suggested we go to a nearby cafe first. But he had a clear idea of what was required. I wasn't allowed to go to the cafe 20 yards from where I was standing but had to walk half a mile to the cafe in the park. I was very grateful for a sit down when we got there. He was happy stirring my coffee on a regular basis and trying to persuade me to have sugar in it (he likes the shiny little packets).

On the way home, we passed a local school which was having a Christmas Fete. There was a little roundabout ride. Having been on one similar in the summer he was very keen to go on it again. after his first go he wanted another and was choosing which little car to sit in. But in the middle of stepping into one, he stopped. He had seen another ride which looked more exciting. This was a ride with swing-type seats on chains that spun out as the ride went round.

He went on it three times, laughing excitedly each time. He looked so thrilled, excited and happy. An idylic moment. But another tantrum when I said we should go home. But home we went. His longest trip out since the operation.

It's a sin

2006-12-02T01:04:00.000-08:00

"When I look back upon my life..."

It's a strange life having a seriously ill child. Strangely geographically constrained. Strangely small number of people. Strangely isolating. At least, it has been for me. Eighteen months so far. Half of it in hospital. But despite this, he has been such fun. This is to remind me what the year has been like.

Life is work and looking after the boy. There really isn't much else. If he's at home, his immunity is usually compromised so he doesn't really see other children. And we don't see other people apart from his wonderful auntie, granny and a friend who lives nearby.

Our life is lived in a circle a mile round our house. We've no car so can't go anywhere - public transport is an infection risk - and during the week the wife couldn't use one. He needs to be accompanied by someone in the back to do suctioning. We don't go on holiday (even to the hospice 15 miles away) for the risk of ending up in a hospital that doesn't know him, which very nearly happened when we tried it.

And looking after him is so tiring that we don't go out in the evenings. I last went out in February and before that in November last year. It used to really bother me that I was losing my friends. But it's not an issue now. It is how it is. The wife has been a bit better at seeing her friends but they are either nearby or are prepared to travel to her. But now even that is declining.

During the week, life revolves around work and the boy. I try to manage work by being pretty strict about leaving in time to see the boy for a couple of hours before giving him his bath, doing his daily trachy tape change and putting him to bed. I manage any extra work by getting in early. I'm lucky my boss is also an early starter.

If the boy's ill and in hospital I will go there straight from work to give the wife a break for a couple of hours. This means getting home late. That's a very wearing time for both of us. Being stuck in a small cubicle all day is no joke.

At the weekends I try to give the wife a break by having him for most of Saturday. It is easier like this, as if I have him for only part of the day he will spend too much time wanting Mummy. Which makes it rather wearing on him and me.

When he wakes up I try to get him to use the potty. He is very proud if he uses it. Then he wants to march off in the bathroom to clean it. But that's it for the potty for the day. We haven't managed to get him to accept the idea that he can use it in the rest of the day. And there have been too many other battles to fight to insist on it. Then he plays and "helps" with the washing up. He tells me what needs washing. And where things should be put away.

Then we play a bit and go to the park. He loves the park. There are rabbits to see and if I'm lucky he will want to go to the cafe to buy me coffee. But buying it is the fun bit for him. I'm not always given time to drink it. After going to the playground and having some time on the swings we do some food shopping. He likes to help by sharing carrying the basket. A mixed blessing, as I've still got to carry the other half and negotiate the aisles with a heavily-laden buggy (you have to carry so much stuff because of what is needed for the trachy, in addition to the normal rubbish that kids need at this age).

On the way home, if we are lucky, we go to auntie's house and see the pandas. He will make me coffee and auntie tea. He will bounce on the sofa and then want to play with the alarm clock and be on auntie's bed.

We then spend the afternoon with Mummy playing in the kitchen or watching DVDs.

Sunday is my lie in. The wife takes the boy to the local market to buy food. He loves going there and knows the sausage man and the bread man. When he gets back, he proudly shows me what they've bought as he unpacks the shopping. The afternoon is spent much like the previous one.

Bit long winded this post but I want to record how it is now in case it changes in future.

Daddy sang bass

2006-12-01T12:03:00.000-08:00

A week that seemed to start so slowly has finished so quickly. But the boy continues to amaze.

Big news of the week is that at age 2 years 11 months the boy has said "Dada" out loud for the first time since his diagnosis. When diagnosed he had three words: Mama, No and Dada. He lost the latter following his operation in March 05. He learned to mouth it after his trachy was fitted. But never out loud. Until now. I was quite overcome last night.

He has developed a mixture of signs, mouthed words and vocalised words. He has quite a wide vocabulary, in so far as I can judge. Since his trachy cuff (inflated to protect him from water etc going into his lungs) has been more than usually deflated as he has been off chemo, more and more of his words have been vocalised. They may not be perfect but that he can speak at all is a minor miracle that we don't want to lose. He is a real chatterbox. Always wanting to tell you about something. Very confident chatting to adults.

Other big news is that he drank water from a beaker. May not seem much but he's been nil by mouth since his first op. And had what they call "oral sensitivity" - he wouldn't put anything in his mouth or even open it. The wife spent over six months trying to persuade him to get water on his hands. Then water on his lips. Then trying to get him to part his lips to have a toothbrush on his front teeth. A long and often fruitless process. But, gradually, he has become more confident. Until today when he was taking big swigs from his beaker and (the important bit) swallowing without it going into his lungs. Fabulous.

And yet. Friday already. Only five days until the next operation. It could all change. All progress could be lost. Irretrievably. But try not to think about it until if and when it happens.

A day in the life

2006-11-30T04:15:00.000-08:00

Less than a week to go until the next op. Tension starting to mount.

The boy had a first trip to the park since the earlier op. He felt well enough to go on the slides and swings. He excitedly told me about the trip and going to the cafe to get tea for Mummy.

Granny came to visit. But this was a mixed blessing as she is very anxious about the op. This is understandable but does tend to disturb our carefully crafted equanimity. Not sleeping very well at the moment. Hard to put fears out of the forefront of my mind at night. There seems to be a constant theme in the posts about this but it's a constant in our lives since the boy was diagnosed.

The Winner Takes It All

2006-11-29T00:41:00.000-08:00

And the winner is... the boy.

We found out yesterday that the boy won the competition that he entered for the Christmas card design (see Picture This 23 November). We were so thrilled. Perhaps overly so but good news is rare round these parts.

A good excuse to re-post his picture:

Oh. And he is indeed having tantrums about auntie's trip to America. Apparently, he had quite a spectacular one yesterday morning. Tears, wailing and throwing himself on the floor. The full works. Was eventually consoled by the thought that he can give her a big hug when she's back.

Living in America

2006-11-28T05:03:00.000-08:00

Hot news from the home front. Tantrums ahoy.

Auntie has gone to spend a week in America. The wife has tried to explain that she is taking big panda and chi chi panda to visit chi chi's parents. But she will be back next week. The boy seemed to understand that auntie is going away but is currently in denial. When the awful reality of no auntie or pandas sinks home there are going to be tantrums a plenty.

Here's the boy's view of the pandas on their visit to the hospital (chi chi is in the foreground).

Must I Paint You A Picture

2006-11-26T05:58:00.000-08:00

Auntie gave us some of the photos from the hospital. Here is my view of the boy; and (when he was well enough to take photos) his view of me.

Saturday Boy

2006-11-26T04:33:00.000-08:00

Being Saturday, it was the wife's turn for the lie in and mine to deal with the boy. A lovely, dull day of normality.

The boy had a good sleep. Not always the case. Makes a big difference to how difficult the day is going to be. After a squabble, he used the potty and was proud of the results. Watched a bit of TV whilst so doing. His balance is still poor. On the way back from cleaning the potty, his head bounnced off the door frame to his room as he staggered after losing his balance. Lots of tears but otherwise ok.

Took our time going downstairs since there was nothing we were pressed to do. He made me do the washing up before I could have breakfast. Of course, he made me coffee.

Coffee was just brewing when we received a visit from Z and his mother. They didn't stay long but it was an interesting visit. The first time the boy has been with another child of his own age since the op. Indeed the first time for several weeks. He was very wary of Z, especially his
quickness, mobility and greater physical strength. Played with me in preference for a while. They did play together later but with the boy always appealing to me to intervene if he couldn't get something from Z or had it taken from him.

After they left we went to see big panda and chi chi at auntie's house. He still regards these visits as such a treat. He excitedly toddled off down the road holding on to me with one hand and little panda with the other. Had a lovely time there. Made a cup of tea for the pandas to share (his new sign). Then he sat with auntie on the big chair reading a book. He is going to be difficult when she is away next week.

Came home via the shops. The boy happy to be home as he had been telling me he wanted to give Mummy a hug and make her a cup of tea.

A slow afternoon as the boy and I were tired from the week in hospital. I was really looking forward to my lie in by the time he went to bed. A pretty dull day by most people's standards. But pretty idylic by mine.

Between the wars

2006-11-25T00:35:00.000-08:00

Second day back. But first day of normality.

Work provided a greater number of challenges than is usual for a Friday. But at least I was able to focus properly on it. A few people have asked about the outcome of the operation but by and large people have, as ever, ignored the elephant in the room. Whenever I've asked about this most work colleagues say the same things. "I didn't want to pry" or "I thought I'd leave it to you to say something if you wanted". I can see that they are trying to be kind and there is that awkward boundary issue at work that doesn't arise with friends or family. Just has a tendancy to add to the isolation sometimes.

Left work early as usual for Friday to provide cover for the wife. Had a good time with the boy playing tea parties for the teddies and making tunnels for Thomas the tank engine. Happily he did not want to watch TV. Perhaps he is fed up with it from watching so much in hospital.

Friends aren't everything

2006-11-24T00:13:00.000-08:00

First day back at work. Was a tough day. But made better by a load of mongs monging on a mong boardTM.

Work was very busy. Got home later than I wanted. Started to flag badly in the afternoon as tiredness from the last week kicked in. That there was a last minute flurry didn't help.

But I found that the mongs monging on a mong boardTM had started a campaign to vote for the boy's card. Was quite overcome by their kindness and the supportive comments. As was the wife. It was especially the case given the events of the last week and how lonely it can feel going through all this. That I've never met any of them doesn't matter.

The boy was lovely to come home to. Gave me a hug when I came in. And was then desperate to make me a coffee and for me to play with his marbles. Very hard not to be constantly hugging him.

Picture this

2006-11-23T05:06:00.000-08:00

The boy's Chistmas card is on a short-list for a competition.

Just before the boy went into hospital for his op, he was there for a scan. Whilst waiting, the wife got him to do a Christmas card for a radio station competition.

Bless his heart, his picture has been selected as one of those to be voted on. Closing date is tomorrow. But this is his entry:

Confusion

2006-11-22T23:59:00.000-08:00

This is to finish off posts about our week in hospital.

Before we left, the surgeon offered us a date for the operation at the end of next week. To allow the boy more time to recover and to give us more time with him we have left it that the operation will be in two weeks time.

It was with some pride that me and the wife watched the boy walk unsteadily off the ward, less than a week after the operation. Had a quiet afternoon at home. He tired very quickly and spent much of the afternoon watching TV. Couldn't really say no.

Auntie and granny came to visit which made him very happy. Pandas came as well. Auntie has been so good to us and him. Then tried to get him to bed early. Hopefully, being home will have given him more security and so he will have a better night.

Have finally told the wife and auntie about this blog. Didn't do so before as I wasn't sure I'd keep it up. They were ok with it, at least initially. Turns out the wife knew already but hadn't said anything. How much this will affect these posts remains to be seen.

Also, re-read posts from the last week. Was tempted to amend some for grammar and bits missing but have decided not to as that's what was important to me at the time about what he went through. Noticed for example that auntie's visits are recorded but not those of auntie m or Granny. This is either because I didn't see much of them or they didn't see much of the boy while I was there.

So, it's back to work today. Not sure how I'm going to deal with such a rapid switch back especially when the next op is so close.

Home is where the heart is

2006-11-22T02:17:00.000-08:00

And today's surprise is... we're off home today.

Last night proved a re-run of the previous night. The boy went to sleep at 7.20pm. Awoke at 8.35pm. Asleep at 9.15pm. Awoke at 10.30. And so on. The morning's tally of saline nebuliser phials shows he woke up eight times. The difference for me was that I struggled to stay awake. Cumulative tiredness meaning I was on the edge of being asleep whilst doing the neb. And then collapsing into bed to fall straight asleep before the next awakening. Except one time I was giving him a neb and the next thing I saw was stars as I'd nodded off and hit my head on the metal bars on his bed.

The boy started to say "Home. Home" yesterday. As he says he is not in pain in his head and has done a bit of walking, they've said that he can leave to either go to the local hospital or home. A tough call that took all of 0.001 seconds for us to decide. Home it is. And back to hospital in two weeks for the next op.

Unbelievable

2006-11-21T07:19:00.000-08:00

Shocking night last night. Shocking day today.

The boy had hardly slept yesterday, notwithstanding the general anaesthetic. So when he fell asleep at 7.30pm hopes were high that he have a good sleep. Oh no. Awake at 9.00pm. Asleep at 9.45pm. Awake at 11.45pm. Asleep at 12.30am. Awake at 2.00am. It all becomes a bit of a blur after that. Nebuliser after nebuliser. And demanding that I gave them all. Feeling pretty punch drunk today and dreading a repeat performance tonight.

Today we were surprised to receive a joint visit from his neurosurgeon and oncologist. Never a good thing. They have decided that they do not want to wait for January for the next operation because of the risk that the tumour will take off before then. The tumour removed last week shows active cells. They therefore want to bring the operation forward to two weeks time. This is, in part, because the boy has recovered so quickly from the last one. He took his first few wobbly steps today. We are rather stunned by this unexpected turn of events. This probably means both his birthday and Christmas in hospital. We haven't had time to digest what this means for us, him or work.

The right way

2006-11-20T13:15:00.000-08:00

There's such a thing as cancer etiquette for parents. It's unwritten. And no-one explains it to you. But you do pick it up.

I was reminded of this whilst speaking to a noob parent yesterday.

DON'T say "will the child be alright?" There's rarely a clear answer. And the honest answer is probably not.
DO say "how is the child doing?" This keeps everything in the here and now, which is where we live day-by-day.

DON'T say "how is radiotherapy / chemo / surgery?" It's so variable for each child.
DO say "how did your child find radiotherapy / chemo / surgery?"

DON'T say "what have been your experiences since diagnosis?" It's too upsetting to go through the whole tragic story. Only doctors can get away with it.
DO say "when did you find out the child was ill?" This allows the parent to say as little or as much as they feel able.

DON'T say "was X treatment successful?" There probably isn't a clear answer to this one either.

DO say "are they (the doctors) pleased with how it's going?"

DON'T say "I'm sure it will all be ok" it probably won't be.
DO say "I hope everything goes well" it's the best we can do - hope.

Good together

2006-11-20T08:43:00.000-08:00

Good news from the scan. Surgery sucessful in removing part of tumour. But the surgeon reminds us that the next operation in January is more risky and uncertain to have such a good outcome.

The boy had a bad night. Only slept for a few hours. Demanded Mummy come in to bed with him. This doesn't bode well for tonight when I will be with him. He spent the morning complaining if I tried to do anything for him. Only Mummy will do.

His constipation has cleared [non-parents may wish to skip the next bit] he had a suppositary last night. Within minutes there was an almighty liquid rumbling from his nappy. Had a quick peek. Wished I hadn't. Four days backlog in one go. When I tried to clean it up the nappy could not contain it and it ran down my hands and arms. Meanwhile Mummy was saying well done. I was not so charitable. Which got me a bit of a telling off. Further squirty noises over the next couple of hours meant lots of time clearing up the mess.

He had the scan this morning and was as excited as ever to go for a general anaesthetic. Happily gave the anaesthetist his line for the medicine and asked to have the bleeping machine (sats monitor) turned on.

The surgeon came to see us soon after he returned to the ward. Happily she came to the bed. She said everything looked ok on the scan. The part of the tumour that she was trying to get has gone and there did not seem to be any complications. We will probably be here for the rest of the week before transferring to our local hospital. The next surgery is still likely to be in January. But she did remind us that the next operation was more serious. Both in terms of the difficulty of the operation and the potential side effects. We'll face that when we have to.

In the meantime the big bandage has come off the boy's head and revealed a large inverted J shaped inscision. Much larger than last time. His neck is a mass of yellow and purple bruises. But otherwise he seems fine.

Good old auntie came to visit again with her pandas and some bamboo for little panda. After she went the boy was desperate to see the doctors in the blue hats (anaesthetists) and got very upset when he realised he couldn't go again today. Strange boy.

Monday morning dread

2006-11-19T09:45:00.000-08:00

A quieter morning after the stressful ones that have gone before. Just as well considering how tired we are. But an oddly stressful afternoon.

I had a quiet night at the spartan hospital accommodation. A large Indian, a couple of glasses of wine and bed. Actually, as this was my first alcohol of the year a more accurate picture is a large Indian, a couple glasses of wine in front of the TV and startled to wake up and find it was 3am. Didn't actually sleep that well. Kept waking up to check on the boy only to remember he was with the wife back in the bay.

Unfortunately, the wife didn't have such a good night with the boy. Despite not sleeping properly the previous night he didn't want to sleep last night either. He kept her up until 3am wanting nebuliser after nebuliser. When she tried to go to sleep he made a fuss crying and generally getting upset. So much so that they had to replace his cot with a bed so that he could sleep with Mummy. But even then he only slept in fits and starts. She looked very fraught this morning.

All the puffiness in the boy's face has gone. And he had a reasonable morning, playing with his toys. He did have a lunchtime nap but afterwards didn't look rested. He wouldn't settle to anything. Behaving in that over-tired don't want anything way that is the worst of two-year olds. And constantly changing his mind every 30 seconds. Even a visit from auntie with the pandas didn't change his mood. That he's chronically constipated from the anaesthetic and morphine doesn't help. A swollen stomach does nothing to help anyone's moods. His or ours.

Tomorrow brings the much-anticipated scan and hopefully the verdict on the surgery.

Stuck in the middle with you

2006-11-18T10:13:00.000-08:00

A more difficult night. But some small steps forward in the day.

Last night the boy wasn't sleepy having slept so much of the previous day. So, he wanted me to stay with him and hold his hand until well after midnight. Got a few hours fitful sleep. No moaning from the other children but the usual peal from the massed ranks of monitors in the bay. Talked to some parents today. Something that doesn't happen too often in cancer or neuro wards. Too much worry about your own child to care about someone elses. All agreed sleeping in a high dependency bay is tough as you never get enough quality sleep. Makes an emotional situation that bit more emotional. Drains your reserves.

And in the early morning he started projectile vomiting. Luckily, he had another high quality nurse overnight. Not sure why he was sick as he hadn't been sick for 24 hours. Could be a problem with the surgery or something more mundane. Could be a bad reaction to the morphine. They're adopting the usual wait and see. But in the meantime the morphine has been stopped. We won't know anthing for sure until Monday's brain scan.

Better news is that he agreed to sit up in bed for the first time. Needed to hold on to the side of the cot and my hand to steady himself. Swayed gently like someone the morning after a heavy night before. Was able to watch a little TV. So his eyes seem to be able to focus and there's no
apparent squint. Hard to asess his hearing as the heavy bandage round his head covers his ears. And we won't know about his balance until he's ready to get out of bed.

The range of tubes and monitors are gradually being reduced. He now only has his two permanent lines and a canula in his foot. He very much wants this removed. But it will stay for a while incase they need extra intravenous access.

Had another visit from auntie. To his delight she brought big panda and Chi Chi to visit him. He was happily introducing big panda to little panda. Little panda has rather been in the wars. He was the recipient of one of the projectile vomits.

We have got a single room for tonight. So as it's unisex this time I'm going to have it. I'm feeling the worse for wear today. Me and Mrs Ctel mainly do tag team care to reduce the wear and tear. Get a bit of rest while the other looks after the boy. Since the morphine stopped he has
retched a few times and said he wants to be sick. But so far he hasn't. Let's hope there's more improvement tomorrow.

The Boxer

2006-11-17T12:20:00.000-08:00

The boy may not be a political heavyweight but he looks like he's gone a few rounds.

Puffy black eyes, swollen cheeks and a fat lip. The immediate after effects of the surgery are making themselves visible. He's spent most of the day asleep with short periods awake. He clearly doesn't want to move as this makes his head hurt. But he has to be turned every few hours to stop the blood settling too much on one side. He hates this and has a few tears.

He's only had one significant time awake - when auntie was here. He wanted to cuddle little panda and point out little panda's head bandage. He even managed a wan smile. But he has no interest in sitting up or doing anthing that requires any effort on his part. He does want to hold hands which is lovely.

You always end up eating too much bad food in hospital. So, for a bit of variety, I went out for fish and chips. On the way back I was accosted by a man. "Boss. Boss" he said. Oh no. He wants a cigarette or some money for a cup of tea or his bus fare (for which read alcohol). But I was wrong. "Have you got the drugs?" He looked quite put out when I said I hadn't. Strange
end to the day.

Black night

2006-11-17T00:50:00.000-08:00

I'd forgotten what fun a night in hospital is. The boy had a mixed night. Much as predicted.

Post-op is always a scary sight. Tubes everywhere. An arterial line in his hand. Catheter to monitor his wee. Two canulas in his foot. Heart montitor pads at the shoulders and chest. Sats monitor on the finger. Oxygen tube attached to the trachy. The upsetting thing is that they say "you can give him a cuddle" but the lines are such that there's no way you can do it. And
with neurosurgery you want to leave them lying down anyway. So you ineffectually stroke their hand or just sit and watch them.

He did have a high temperature overnight and vomitted regularly until the early hours. But mostly the morphine helped him doze through it all. He is still asleep, cuddling little panda (who has acquired a head bandage as well). His face is rather puffy after the operation.

It's always hard to sleep on the ward. Cubicles are relatively the easiest but high dependency bays are much harder, since there are 4 or 6 children there and a couple of parents plus two nurses.

The boy is in a bay. You sleep right next to his cot. You try not to be too deeply asleep, in case something happens. And with the boy, the trachy means it happens very quietly. The day was easier as the nurse looking after him was one that looked after him after his last op. This gives you confidence as everyone initially says how complicated he is. Didn't know last night's. Stayed up for quite a while talking with her about him and dealing with him when he vomitted. Cleaning him up and suctioning, trying to make sure that none of it got into his lungs.

Then tried to get some sleep myself. But bays are noisy places with monitors, syringe drivers and pumps of various kinds regularly bleeping. They always make me wake with a start to check whether any of the bleeps are from his equipment. And one of the other kids in the bay had a bad night, moaning about pain and shouting at his mother. Got two lots of three hours sleep. Bit gritty-eyed but a shave helps a bit psychologically.

Today's issue is his MRI, which the surgeon said he should have. Doesn't seem to have been pre-booked when the op was fixed. I reminded them and so now he's on a waiting list. It has to be now or not at all because of the swelling and then scarring. Because only we have the boy's interests at the forefront of our minds, rather than that of a number of kids, you spend some time trying to think ahead and check things haven't been forgotten. Might sound all very pushy parent but it is the product of a bit too much experience.

Isolation

2006-11-16T10:29:00.000-08:00

The boy has had his operation. Only two hours, though he was in theatre for five hours. The surgeon thinks it was successful and the tumour from the fourth ventricle has been removed. No side effects so far. He can move his arms and legs. But the next 48 hours are critical as any side effects become apparent. Next operation in January all being well.

Long day today. Had to be up early to get him to hospital by 7:30am. But didn't go to theatre until 9:30am. He was thrilled to be there and to see the anaethetist. He excitedly got his line ready for the anaesthetic. Much to the surprise of the anaesthetist. The wife got very upset when he was being put under and only just made it out of the room before welling up.

He was in theatre for five hours but the operation only took two hours. The remainder of the time was spent sorting his trachy out and it having to be replaced for one that did not leak.

We spent the time having an ostensibly calm lunch trying not to think of his head being cut open. He was very sleepy in recovery but seemed to recogise us. Probably the effects of the morphine. The next 48 hours will be critical as his body reacts to the surgery. He can move his arms and legs. But we can't yet tell how well nor how his eyes are or the effect on his swallow / balance. He is very nauseous and is retching regularly.

At the moment he is sleeping. Breathing good but heart rate up as he is starting to run a temperature. I will spend the night with him. The nurses are very good and have taken us through the likely effects over the next few days when they expect him to get worse before he starts to get better. Let's hope we can get him through this period without him having to go to
intensive care, as happened last time.

Tomorrow, all being well he will have a MRI to see whether they got all the tumour that they wanted. This has to be done within 48 hours otherwise the swelling will obscure the true position.

Atmosphere

2006-11-16T02:02:00.000-08:00

And so the morning has arrived. He's now in theatre. Only waited 2 hours, which is pretty good by hospital standards.

He was amazingly keen to go to hospital today. And quite frustrated that the doctors took so long to be ready for him. He couldn't get his central line out fast enough for the anaesthetist. She looked a little stunned by such cooperative behaviour. Cheerfully telling them to clean it first and waving to the surgeon.

The wife was pretty cut up and only just made it out of the anaesthetic room before welling up. I've decided to try to wait for the outcome before getting upset.

Info Freako

2006-11-15T05:35:00.000-08:00

To avoid thinking about tomorrow's operation, let's look at UK treatment options. From what we've heard from the various consultants, there seems to be a standard treatment for ependymomas in children. It goes like this:

Surgery (complete resection is seen as best route to a cure, anything less brings the already low odds tumbling down)
Chemotherapy (baby brain protocol - a mix of carboplatin, cysplatin, vincristin and methatrexate) to get the child to age 3 years plus but ependymomas are not seen as particularly responsive to to chemo
Radiotherapy (conventional)
Errr...that's it

If the tumour resurfaces there's either more surgery (only if the hospital think its worth it and it isn't going to cause too much damage) at their option or secondary chemo which is designed to extend life not achieve a cure (things like etoposide). Everything else is not licensed or only for trials when the patient is probably on the way out. Even things like Gamma knife therapy don't seem to be much used here on children.

Thanks to those that have commented (bit of a surprise). I am keen to know of other chemo or other treatments used elsewhere.

Photograph

2006-11-15T02:37:00.000-08:00

After yesterday's grumpy posts, something lighter. The boy has been getting more and more interested in photography. A child of the digital age, he loves the fact that you can see pictures immediately after they've been taken. He's started to take them himself. His early efforts were marred by his chubby fingers covering the lens. Now, we've persuaded him to remove his finger and point the camera at the subject, rather than at himself to check its working.

Little panda plays a game with big panda

Auntie comes to tea

Dada comes home (I think he was pressing the zoom on this one).

Stuck in a moment you can't get out of

2006-11-13T16:44:00.001-08:00

Let's talk side effects, since we're now gearing up for Thursday.

Most likely: loss of hearing in one ear, temporary or permanent loss of swallow / cough / gag reflexes (trachy becomes permanent), temporary misalignment of the eyes (squint)

Quite likely: temporary or permanent hemiparesis (paralysis of one side of the body affecting one arm and one leg), loss of muscle control in the face (affecting tongue / speech).

Less likely: brain damage affecting IQ, loss of muscle control on one side affecting eyesight.

But the most difficult thing is that the tumour may be such that the neurosurgeon doesn't get part of the tumour to be resected but we get some of the side effects anyway.

Mirror Mirror

2006-11-13T16:44:00.000-08:00

People do talk a lot of nonsense to you when you're the parent of a life-limited child. Great euphemism "life-limited". They mean "odds on terminal" they just don't want to say it. And it's amazing the range of euphemisms that come up time and time again:

What they say: "I do admire what you do for the boy."
What they mean: "I'm glad I don't have to put a piece of plastic tubing in an open wound in his throat."

What they say: "You are marvellous parents."
What they mean: "You do have to put up with a lot of crap don't you."

What they say: "Amazing how you're always cheerful."
What they mean: "Please don't cry in front of me. I wouldn't know what to do."

What they say: "I couldn't do what you do."
What they mean: "Rather you than me."

Parents of children with cancer are no different to the next person. They're just trying to deal the best they can with the hand they've been dealt. They're not supermen and women. After all, what are you supposed to do if your child has cancer? Walk away? So you keep taking it. And when you think there's nothing else to give, the situation demands a little more. And then some more. Logically, there must be an end, either to the situation or what you can take. Who knows which comes first.

Days

2006-11-12T10:24:00.000-08:00

Friday's events by the boy, as told to Daddy:

Had a lie in. Mummy was sitting in the chair when I woke. I love it that there's always someone there when I wake up. But I was wet. After I let Mummy change my nappy I helped her change the sheets. I have to use a red alcowipe to make sure the matress is clean. This is very important. Then Mummy puts the undersheet on and I have to get back in the cot to help put the topsheet on. Mummy always says I'm very helpful but then she fiddles with the sheet after I've got out of the cot.

Went downstairs. Played with my toys for while. Helped Mummy with the washing up. Told her where to put things away and told her what to wash up. How did she manage without me?

Then the woman with the red car came. She put my car seat in the car. Auntie came but no pandas. Auntie said they were sleeping. We went on a drive. Saw lots of buses, went in a tunnel but saw no fire engines. We parked and I told Mummy we had to go and see lots of ambulances. Saw lots of ambulances and an ambulance car. Made sure I touched them. One was rather dirty, so Mummy cleaned my hand. Shame none had their flashy lights on. But waved to the ambulance men and women. They were eating. This is how ambulance people are. If they are not playing with children in the back they eat, drink or read the paper. I want to do this when I'm bigger.

Went in the hospital. Lots of toys there. Had a tea party with Mummy and Auntie under a table. Pity little panda was not here to have tea. Then went up and down the corridor in a yellow and red plastic car. Mummy chased me. Started to feel a bit tired but not going to tell Mummy that or she would make me go back in the cot for a sleep.

Went downstairs in the lift. I made sure I pressed the button to call for it. Went to see a woman with a white coat and blue hat. Offered her my wiggley line from under my vest. She gave me some white medicine while Mummy gave me a cuddle. Then I was woken up by Daddy being annoying and tickling my feet and stopping me putting my hands behind my head. But Postman Pat was there is his van. I vroom-vroomed him around the cot. Good to see Mummy and auntie were still there.

Then lots of people came round the cot and started talking to Mummy and Daddy. I got a bit bored and grabbed Daddy's hand so he would play with Pat. Then everyone looked pleased but Mummy and auntie had wet eyes. Everyone then left again. Shame, as I wanted to show them Pat and his black and white cat. Mummy and auntie went off to talk on the telephone. So Daddy and I found the yellow and red car to go up the corridor to look for Mummy, who was hiding. Then I waved auntie bye-bye. Did some more riding in the car until Mummy and Daddy said it was time to go. Went in a taxi home. Got rather cross when we didn't see ambulances before we left.

Got home and was only able to play a bit before I had to have a bath and go to bed. But as I'd had a snooze in the afternoon I played and read with the nurse for ages before I was ready for a nebuliser and sleep. What a fun day out.

After the watershed

2006-11-12T05:08:00.000-08:00

My morning off. Should be resting not blogging. But there you go.

Tired. So very tired. Too much emotion over the last week.

Tuesday's MRI and worry about heavy-handed trachy changes. Wednesday's neurosurgeon call about possible third tumour. Thursday's day lost in the fog of trying-not-to-worry worry. Friday's wait for the second MRI and verdict. The relief that it was a red herring. Saturday's try desparately to enjoy the time with the boy. Followed by the emotional crash last night. I completely mis-handled a phone call to auntie, which was meant to be thanking her for what she's done this week. No good deed goes unpunished. Not sure what happened. But my blundering about made things worse. Compounded things by staying up too late last night.

Now we have to gear up again for the surgery on Thursday. Never a dull moment.

Everyday a story

2006-11-10T23:48:00.000-08:00

What a day. But at the end of it the boy is still in there fighting.

It's been a hell of a last 48 hours since we heard that there may be something else in the boy's brain. But what is it? Another tumour or a blood vessel. Me and the wife have been trying so hard not to prejudge the outcome. But it was so hard not to jump to conclusions that it was another tumour.

The MRI took place yesterday afternoon. As I don't have much holiday left I went to work in the morning. The boy went to the Big National Hospital with Mummy and Auntie. There wasn't much room in the car so only little panda could make the trip. By the time I arrived at the hospital the boy had just gone into anaesthetic ahead of the scan. We all went for a nervous coffee down the road, making brittle conversation trying desperately to be witty and light-hearted.

We got back to the ward to wait for the call to go to recovery to collect him. It was strange being there again. We spent so many weeks there after his neurosurgery wanting to be somewhere else. And this time we were hoping that the scan will mean we can come back.

After a short while collected him. He was fast asleep. We took him back to the ward to let him sleep it off and to wait for the neurosurgeon to come back from a conference. With the boy asleep none of us knew what to do withourselves. Eventually, I woke the boy up by tickling his feet otherwise he wouldn't have slept at night. That gave us all something to focus on, giving him water, sorting out his feed and playing with him. The neurosurgeon eventually came back and came to the bed - always a good sign. Blunt as ever, she said it had been a red herring and there was nothing on the second scan. Auntie and the wife looked misty-eyed. Don't know about me. A relief of tension that we had got away with it. But followed by the renewed worries about surgery as the neurosurgeon started to plan a new date for the operation for next week. Never a quiet moment.

These days

2006-11-10T02:31:00.001-08:00

Today's the day that we have the new MRI and hopefully the result. It would be awful to wait the weekend.

Didn't sleep very well last night and work is a bit surreal. Hard to focus on the day to day routine when something so large is looming in the background.

Waiting for the great leap forwards

2006-11-09T23:16:00.000-08:00

Here comes the future and you can't run from it.

The MRI is torrow but today we are in the eye of the storm and the boy is the centre of the eye. He carries on in his happy way helping with the washing up, washing clothes and making me coffee. It is both joyful and heart-breaking to see him toddle about the place.

The final countdown?

2006-11-07T06:54:00.000-08:00

Our luck on the MRI roulette may have run out.

The neurosurgeon rang us at home with the results of yesterday's scan - never a good sign if someone so senior rings you. It shows a new anomaly in a different part of the boy's brain. They aren't yet saying that it's another tumour but they have cancelled this week's operation. He will have another scan later this week.

We can only hope the new scan shows it's an enlarged blood vessel. If not, it probably means the beginning of the end. But for now, we are just in shock and keeping our fingers crossed. All these prayers to various deities may not have worked.

I don't need this pressure Ron

2006-11-06T10:53:00.000-08:00

Only a couple more days to go to the first operation. It now seems only too real and makes me queasy with dread.

Preparation for the operation started today. The boy had a MRI. A process not without risk. He has a trachy with metal in it. So, the trachy has to be changed for one without metal in it before the scan starts and then changed back to his normal trachy afterwards. This can cause some trauma to his trachy site - really an unhealed hole in his neck. Our nervousness is compounded by our experience last time when something happened during one of the changes to make his neck bleed. A horrible sight to go into the recovery room to find him moaning with blood and secretions frothing from his trachy.

This time it seems to have gone ok. But now we have the worry of the night as anaesthetic depresses your breathing afterwards. Not a good thing as this means he needs oxygen and puts stress on his respiration. This makes him more likely to have an infection take hold.

Let's hope he has a good night and the scan result is ok. Scans are a bit like Russian roulette where they add a bullet each time as the more he has the more likely there is to be a bad result.

At least a trip to hospital means that there were ambulances to stroke. Always a winner in the boy's book. In the bottom right corner of the picture you can just see his arm waving as the ambulance goes past.

Bring My Family Back

2006-11-04T13:06:00.000-08:00

Had a really nice day with the boy today. In the morning he supervised me doing the washing up. Telling me imperiously which order to wash things and where to put them when washed. And then he tottered off to get the sheets from his cot to put in the washing machine. That they were not dirty was of no matter to him.

Then he decided that we needed more milk and put on his prized wellies. The ones with blue stars on them and put his coat on and ordered me to get ready. This would have been more impressive if he had been able to point to the front door. He couldn't because his coat was on upside down and he was struggling like a drunk at closing time with incomprehension at what was going wrong.

His confident walking down the road and racing from drain cover to drain cover left me a bit moist eyed. Luckily, he counter-balanced this by throwing an almighty strop in a shop, complete with throwing himself full length on the floor and sobbing inconsolably as some mothers looked on in a mixture of sympathy, indifference and distain.

Best moment of the day was having to change the boy's nappy (what a stinker) at the side of a busy road whilst he cheerily waved at the traffic and passers-by.

Ebony and Ivory

2006-11-04T01:39:00.000-08:00

Pandas are THE thing in the boy's life at the moment. They are friend and patient. There are two pandas in his life.

The boy's own panada - imaginatively called "little panda" - is the boy's alter ego. He has developed from being something to cuddle, to having a central line inserted, a covering dressing and vest. Poor little panada needs to have regular blood tests. The boy takes the preparations for these very seriously. Examination gloves must be worn, a blood test tray must be laid out with four syringes for hepsal, flush and bloods. The tray must be cleaned before use and the central line alco-wiped before each access. The blood taken must be put in specimen bottles and
shaken before being put in a bag for the lab. This process takes ages and may have to be repeated several times. Then little panada may have to go to hospital in an ambulance driven by the boy paramedic because panda is often ill with a chest infection.

The other panda is even more important and is called - bet you can't guess - "big panda". This is special as this is auntie's panda. He is only seen on visits to aunties house or on special occasions when he come to visit little panda and brings some bamboo to eat. When big panda leaves, the boy delicately kisses big panda on each cheek and gives him a hug before waving auntie off down the road.

Here comes your man

2006-11-04T01:05:00.000-08:00

Some good news for a change. The Big National Hospital have delivered for the boy. We now have a slot for the MRI next week, ahead of the operation. The wife and I are worn out from the worry.

Under pressure

2006-11-03T04:41:00.000-08:00

As if waiting for the operation next week and the worry about the risks weren't enough, the operation's suddenly in doubt.

Out of the blue a week after fixing the date for the operation, the Big National Hospital have decided that he needs an MRI beforehand in case there's been any change in the tumour. This sent our pulses racing as this is exactly what we have been worrying about as we watch his hair grow back. And another thing, they said, unfortunately there aren't any free slots and
you'll be on a cancellation list. No MRI, no operation we inwardly screamed.

It's just so tiring dealing with work, the boy, the wife and my own worries about what will happen to him and all our futures. Me and the wife look pretty haggard. But you just have to keep taking it. What else are you going to do?

Doctors get younger everyday

2006-11-01T13:09:00.000-08:00

Ages and ages ago we agreed to be part of the training programme for medical students. Training nicer doctors by letting them get to know patients as people rather than as illnesses.

And so, this afternoon two first year medical students turned up to meet the boy and me - the wife having to go to a meeting at our local hospital about the operation aftercare. The students were alarmingly young, very earnest and rather sweet. He was tall and already looked the part. Just the right amount of dishevellment to his shirt and tie to imply he'd come straight from doing a long operation. She was more self-contained, watching and listening rather than asking many questions.

I took them through the sequence of events starting at the beginning of 2005, through admission, the shock, horror and disbelief of the first MRI scan, the neurosurgery, the gastrostomy operation, the trachaeostomy operation, the time in intensive care, the months in hospital, the failed chemotherapy, the radiotherapy, more chemotherapy and so to where we are now in our phoney war period, waiting for the operation next week. Goodness, it's a long list. He's been through so much. And it was surprising how upset I got in the telling, given how many times I've had to go through the sorry tale for doctor after doctor.

They were very nice about it and the boy was very good playing with his cars and diligently transferring smarties from one bowl to another. They asked some pretty direct questions including "How has it affected your social life?" which was quite funny. I told them we don't have one because we never know when we are going to be in hospital or out and if anyone has
the slightest illness we don't see them. But they also asked "How has it affected your marriage?" A question I guess you have to be very young to ask in such a direct and unabashed manner. I answered as honestly as I could in that I really don't know since we've spent so much time apart caring for the boy and so little time as a family let alone a couple.

They said they plan to ring us in a couple of weeks for a follow-up visit. I said fine but we didn't know where we'd be by then or if we'd be up to it. The boy walked them to the door, made sure they put their shoes on and waved them off down the road until they were out of sight.

keeping healthy

2006-10-29T05:24:00.000-08:00

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

2006-10-27T00:24:00.000-07:00

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

2006-10-26T09:20:00.000-07:00

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

2006-10-24T13:13:00.000-07:00

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

2006-10-24T12:38:00.000-07:00

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

2006-10-23T09:17:00.000-07:00

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

2006-10-22T07:40:00.000-07:00

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

2006-10-20T05:09:00.000-07:00

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

2006-10-20T04:53:00.000-07:00

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.