Sunday, December 31, 2006

Best Foot Forward

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.

Saturday, December 30, 2006

Bizarre Love Triangle

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.

Thursday, December 28, 2006

Quattro Stagioni

Tuesday, December 26, 2006

Imitation of life

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.

Monday, December 25, 2006

Silent Night

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.

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Sunday, December 24, 2006

Tiny meat

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.

Saturday, December 23, 2006

Christmas happy shopper

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

Friday, December 22, 2006


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.

Thursday, December 21, 2006

40 Winks

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.

Wednesday, December 20, 2006

Back in the USSR

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.

Tuesday, December 19, 2006

Happy birthday

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?

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.

Monday, December 18, 2006

Back home

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.

Sunday, December 17, 2006


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.

Saturday, December 16, 2006

Tired of singing trouble

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.

Friday, December 15, 2006

Red barchetta

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.

Thursday, December 14, 2006

Look up

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.

Wednesday, December 13, 2006

Plateau (of normality)

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.

Tuesday, December 12, 2006

Man on the moon

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.

Monday, December 11, 2006

All the right friends

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.

Sunday, December 10, 2006

Find the river

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.

Saturday, December 09, 2006


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.

Friday, December 08, 2006

Human NRG

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

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.

Thursday, December 07, 2006

Half a world away

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

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.

Wednesday, December 06, 2006

A better life

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

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.

Tuesday, December 05, 2006

Walk unafraid

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.

Monday, December 04, 2006

World in motion

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.

Sunday, December 03, 2006

Feeling Gravity's Pull

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.

Saturday, December 02, 2006

It's a sin

"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.

Friday, December 01, 2006

Daddy sang bass

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.