W.F.L.

Still can't quite believe the boy's scan results. All this after two years, after all we've put him through and after all the side effects he's left with. Hope all gone.

So much wanted to hear that December's scan anomoly was scarring not tumour. Ependymoma's may have a high recurrance rate but I wanted a bit of time without the long shadow of the tumour over us. Time to be a family. Time to enjoy him. Time to be a parent rather than a carer. A day to look at him without thinking he's going to die. But it's not to be.

Three long courses of chemo. Three major brain operations. Thirty doses of radiation. Fourteen months in hospital. All seemingly for nothing.

No idea what the options we will be offered will be next week but they probably amount to this:

- options for cure: (a) more surgery with the high risk of further significant effects on his quality of life; or (b) gamma knife radiotherapy 200 miles away.

- options for managing his decline: (a) more of the chemo he's currently on with a risk of secondary tumours; (b) experimental chemo to assess it's effectiveness with little idea of side effects or effectiveness; or (c) do nothing.

Given where the tumour is and that he's already had a heavy dose of radiation, there's no guarantee that he will be offered any options for cure. We may well have to face the unpalatable choice of the options for managing his decline and wondering how long he's got. Don't know how we can help him or us through the end game. Too hard to think about now.

And now a day in hospital alone with the boy.

Dead souls

Got the scan result. Bad news.

Saw the consultant today about Wednesday's brain scan. She said that the anomoly identified in the post-neurosurgery scan is still there. As it shows up with contrast we have to assume that there is still tumour.

As you might imagine we are crushed and in shock. We will have another meeting at the end of next week but options for future treatment may well be limited (if at all) in relation to anything that will save him. We are most likely to be considering options around the quality of his remaing life. Can't quite believe it after all he's gone through but that is the reality of where we are.

It has always had the element of being in a particularly melodramatic film. But this one doesn't look like it will end on a heart-warming note as the credits fade.

Emotive

Scan went ahead today after all. The boy seems ok so far. Hope to get results on Friday (shamefaced oncologist sheepishly said she couldn't do Thursday after all).

The anaesthetist came to see him last night. Lots of teeth sucking about whether it could go ahead. Chest infection ... Blah blah ... You know the risks ... Blah blah ... Risk of procedure ... Ventilator ... Blah blah ... Intensive care. That he had just had a tantrum and needed lots of suctioning didn't help. They came back this morning and pronounced themselves prepared to do it.

Took a long time but went ok. He slept for a long while afterwards. But he didn't go straight to intensive care. He's still in oxygen but not doing too badly all things considered. The night is the key time.

He did want to get out of bed afterwards and play for a bit. Took some very faltering steps. His leg muscles are somewhat wasted after so long in bed. Needed his hands held for balance. He tired quickly and was tearful and bad tempered by bedtime. Despite the blood transfusion he has that pale waxy palour of someone at the end of a long chemo session.

We hope to get the results on Friday afternoon. The wife and I don't look much better than him. One of those days when I wonder if I did the right thing going back to work at all, let alone the stressful one I've got. The strain is telling all round.

Keep the car running

There are days when I can face the battle. There are days when I just want to run away. This is one of the latter.

All being well, the boy will have his brain scan on Wednesday. And we get the preliminary result on Thursday. We want a clearcut answer but the oncologist says it may not be so definitive.

As is usual before a scan, I feel anxious and worried. Want to know the answer but also don't want to know. Ignorance is bliss and all that.

The boy had a good day. Got out of bed for the first time for more than two weeks. Still attached to an oxygen cylinder but a big deal nonetheless. Of course, come the evening he had worn himself out and his oxygen needs soared again. Hopefully, a good sleep will sort him out but then again a relapse would be no surprise.

God only knows

There are times when hospitalisation seems so normal. Then there are times when you realise how abnormal it all is.

The boy was asleep when I arrived this morning. Normally, he's awake and you get thrown into the care routine with no time to take stock. Not today. And I had a sudden realisation of just how much equipment he has keeping him stable:

- saturation monitor attached to his toe to monitor blood oxygenation and heart

- feed pump attached to his gastrostomy

- oxygen cylinder for nebulisers

- a big oxygen humidification machine with an 'elephant' tube attached to his trachy.

He looks so small and vulnerable in such a large bed among all the equipment.

It was two years since diagnosis the other week. Such a long time. Hard to remember we had a life before it. He's been in hospital for longer than he's been out of it. I do wonder whether we will ever be in a position where he doesn't need all of it.

He's soon awake. In a good mood. Wanting to lie back in bed but cheerful. Auntie coming adds to his good mood and he is very affectionate towards her. Holding her hand while watching TV. A reasonable day for a change. But marred by a late afternoon visit from the respiratory specialist who is suggesting that the delayed recovery may be a result of low level continuous lung damage arising from the continuous saliva trickle into his lungs as a result of his damaged swallow i.e. chronic damage. He says we may have to keep the trachy cuff permanently inflated. This will upset the boy so much and stop him talking. Being so tired after a long week I can't adequately express how hard this hit me and how upsetting this feels.

Journey from A to B

The boy's much the same. The local hospital are concerned and seem to have run out of ideas. So, they've transferred us to the big national hospital.

The boy is still in 5 litres of oxygen. Secretions very thick. No real improvement. The local hospital have taken x-rays which don't really show anything that they can pinpoint. They have tried a range of antibiotics and a haemoglobin transfusion to no noticable effect. They have tried a CT scan but the boy wouldn't cooperate.

They seemed to be out of ideas whilst remaining anxious about his condition. They think he needs specialist assessment. They were starting to scare us with talk of possibilities including fungal infections or chronic permanent conditions that could only be assessed by tests that either involve him being sedated (which would depress his breathing and put him on a ventilator for who knows how long) or a deep lung suction (which could cause haemorraging in the lung). And they were starting to be increasingly concerned about us continuing with his chemo. They wanted to stop. We didn't as we had experience of the big national hospital giving him chemo when very unwell (to stop for more than 24hrs might reduce the effectiveness of the chemo - so a hard balance between chemo and managing the illness). They advised us to do so, after apparently talking to the big national hospital. We were surprised, so talked direct to the big national hospital and got different advice. So we carried on. We didn't want him to get over the chest infection but succumb to the cancer.

In the end, they decided that there was nothing further they could do but he was a concern. So, they agreed with the big national hospital to transfer him there. This will allow him to be assessed by respiratory specialists. There transfer was not without stress. The wife had to press for the transfer to be by blue light ambulance, rather than normal transfer, as she was worried about him having an episode while on route and getting stuck in traffic. They eventually agreed. But this meant he did not transfer until the evening.

There are some compensations about moving. The cubicle is much nicer. It's larger and not too hot. And the doctors seem relatively relaxed about his condition - their view is that this will just take a long time to clear. Let's hope they're right.

As a reminder of happier times here's a picture from spring 2006:

I don't like Mondays

No real change.

The boy's breathing was still rapid and laboured when I got to the hospital after work. He's still in plenty of oxygen. They are regularly testing his blood gas to check on his co2 levels. High but not dreadful. Whatever he's got just isn't shifting. But intensive care still on standby. It's a constant worry for me and the wife.

Fall On Me

Did I say recovery? I meant a worrying weekend of no real improvement.

Saturday was exhausting. The boy was awake from 7.00am.He was farly cheerful in the morning but secretions ridiculously copious - we went through some 400 catheters in just over 12 hours (normal day is only about 70). He tired, usurprisingly, in the afternoon but wasn't too bad. Still in quite large amounts of oxygen. The boy eventually fell asleep at 8.00pm after a large vomit.

He slept well Saturday night. Sunday was a real contrast. Secretions minimal. so much so that by the afternoon he was coughing and nothing was coming up. His breathing was laboured and the doctors were getting worried again that his blood gas levels of co2 were too high. Intensive care was alerted. He had physio and constant nebulisers. This eventually made some improvement but his secretions were like toffee and hard for him to shift.

So, he ended the weekend no better than Friday.

Perfect Kiss

First signs of a tentative recovery from his most even day yet. Vomiting reduced but oxygen needs still quite high.

Yesterday, when I saw him after work he was asleep the whole time. Today, he was asleep when I arrived but did wake up after a while. We even played a bit - albeit with him still in a prone position. I even got a few smiles out of him when I kissed him, with him vigorously wiping his face.

He still tires very quickly and is still on quite a lot of oxygen but at least there are signs that he might be starting to recover.

Gardening at night

A slightly more even day. But by no means in the clear.

On the upside, he had his first time in air since Sunday and even played for a bit. On the downside, he has been vomiting regularly (he doesn't seem to be tolerating his feed terribly well, even at a slightly reduced rate. And his time in air didn't last. By early evening he was back on oxygen at 5 litres. He has been left so exhausted by this infection that he tires very quickly and is sleeping regularly, waking only to vomit.

He is still in a very fragile state. But we have to hope that he is starting a slow recovery.

Breathe me

Another poor day after a not terribly good night.

He got through the night without getting significantly worse than the previous evening. His oxygen needs fluctuated through the night but overall were still too high for comfort at 4 litres. I didn't get much sleep at the hospital but still had a better night than the boy.

He's had an indifferent day. A short period of playfulness followed by a longer period of lethargy followed by an even longer period of sleepiness. His sleep has only been interrupted when he has woken to vomit.

His secretions have gone from being sticky to very loose. Seems like they are saliva going into his lungs not fluid coming up. We've had to put his cuff up to almost maximum to manage it. He had a real tantrum about this and is very upset at the sensation and that he can't speak.

He ends the day in no better position than last night. He looks pale and unwell. His oxygen requirements are still high at 4 litres. We have to hope he has enough resilience to come through. The antibiotics don't seem to be having an effect, so it must be viral. He just has to get through on his own.

Love Movement

The boy is still in hospital and had a very mixed day.

After the severity of Saturday and the close shave with intensive care, Sunday was a day of greater equanimity. The boy was still in oxygen but was more alert in a way that belied his oxygen needs.

Today has been a real mixture. He had an ok night. Not great - sick a couple of times - but not awful - his oxygen requirement reduced to 2 litres. He had a cheerful morning with no temperature and even a period off oxygen completely. But by early evening he was started to look peaky and his oxygen needs started to climb as he tired (afternoon nap notwithstanding).

This evening has not been good. For a while his oxygen needs climbed back to 8 litres. He's worn out and again not coughing things out. Some intensive physiotherapy got it back to 4 litres. Not a good position, so I'm spending the night here. Who knows what it holds?

These days

What a day yesterday. When I wrote the last post he didn't seem too bad. Wrong, wrong, wrong.

We were several hours in A&E, despite warning the ward in advance that he was on his way. A&E only did maintenance. No treatment.

By the time we got to the ward he was sleepy and in 3 litres. I thought he was tired from coughing up all the secretions. He was but his body was also shutting down as he was running a temperature and his lungs had started to fail. In the space of three-quarters of an hour he went from 3 litres of oxygen to 4, to 5, to 6, to 7 and finally to 8 litres. His head and torso was burning with a fever but his hands and feet were icy as his body lost control. The doctors were getting really worried.

It's hard to explain how worried they were. Put it this way. When we have been in for previous chest infections a doctor comes for a few minutes and then goes away. A few hours later the consultant turns up, stares at the boy, smiles and leaves. The nurse comes in for twenty minutes and then goes away, popping back every hour or so. This time we pretty much had a room full of people for four hours. The nurse looking after him, the senior nurse, the doctor and the consultant with the intensive care registrar popping in and out.

They had intensive care prepared for him and were pressing me to allow him to be transferred. They were planning to put him on cpap - some kind of ventilator. He wasn't producing any secretions as he was too weak to cough them up. There was talk of collapsed lungs, blood gas and nitrates. A couple of hours all passed in a bit of a blur to be honest. Anyhow bottom line was, if he needed even a little bit more oxygen or his temperature didn't stabilise then he was going to intensive care.

This was the situation when the wife arrived. Just when it was looking a foregone conclusion, the doctors and nurses who had been in a permanent melee around his bed left for the shift change. The wife gave the boy some physio which brought up a little secretions and then boy settled to sleep, with me watching the sats monitor and willing his oxygen saturation to go up. It finally stabilised. He then improved markedly over the next couple of hours, with his oxygen needs coming back down to 3 litres. Bad but not life-threatening. I left the wife to it at about 9pm.

Chest infections scare me. Ever since his first bout of pneumonia, I've always worried that it will be a chest infection that will do for him, not the cancer.

Blue moon revisited

The boy's back in hospital. Two days into his next chemo cycle and he's got another chest infection.

The boy had a so-so night. A slight temperature and some paracetamol. Only needed oxygen in the morning and then not much. His temperature was ok when he woke up. But early secretions were worringly nasty yellow-green. Then they went clear and copious. Did a ridiculous amount of suctioning in the hour and a half after he woke up. Took his temperature again to find it had gone through the roof. Then his oxygen requirement followed.

Called the hospital and then an ambulance. Usual rush to pack up and desperately trying to remember everything. There's always something you forget. This time it was his eye drops and little panda. Both equally serious. But he enjoyed the journey in the ambulance.

The x-ray is not great. But neither is it awful. Hopefully, we can manage it successsfully with antibiotics and paracetamol.

Leave me with the boy

Another chemo course finished. One more and then the scan.

The boy has finished his second course of Etoposide. His last blood results were ok for this stage in the cycle. But he seems worn and eyelashes falling out are making his bad eye permanently bloodshot.

Next week he has a review by the oncologist and blood test. All being well he will start on his final course at the end of the week. And the next scan at the end of the month.

Notwithstanding his blood results he has need some oxygen support for part of the past few nights and for all of the night before last. A perpetual worry.

Yesterday, saw a friend and her son for the first time since early November. Since then either we've been in hospital or they've had coughs or colds that have ruled out meeting up. First time for the boy to meet another child this year. Didn't look good for a while. The boy refused to come to the door. Refused to say hello and wanted me to give him a cuddle while he sat on a chair. Then the other boy picked up his Thomas the Tank Engine model and my boy was off to rescue it. This seemed to reconnect them and they played happily, if not together, with a range of toys. Luckily they didn't stay too long.

Was nice for me to meet another adult out of work who isn't the wife. She said I was angry. Probably right. Much is the disappointment about the slow decline of the relationship with the wife. She hasn't really asked me about me or even about work for so long (18 months?). It's all about the boy's health, needs and day. Only time it comes up is periodic outbursts by me which are so full of fury they frighten her. Then it subsides and we return to not discussing my fraying state of mind - as long as I can bring in the cash and do the childcare.

All compounded by me reciprocating this behaviour since the period just before the boy's operations in November and December last year. I realise I rarely ask how she is. And if I do have little time or patience to listen to the answers. I rely on her having weekly sessions with the psychologist or spasmodic evenings with friends.

I no longer have sufficient energy to deal with her needs. They are a poor third behind the boy and work. Sadly, this is the only way I have been able to resolve the twin pressures of work and the boy without risking going off the deep end as I did in autumn 2006. But it is an upsetting state of affairs.

The Build Up

Seen the next two schools. This completes the trio that might have him. But we are still awaiting progress on the statement. The wife is chasing.

Saw our local nursery school a couple of days ago. Structurally, it is essentially the same as when the Victorians built it. Not very friendly for a child with poor balance who can't walk too far. Went through his history with the head teacher. Prepared to consider him if he comes with support. She seemed efficient and helpful. But the lack of potty training will be an issue as there's nowhere to change nappies. And making staff aware of his needs will be an issue. Feels very much a last resort for the boy.

Saw the special needs school today. It's quite a long way from home, which makes transport an issue. The staff/pupil ratio is very good. The pupils have a range of mental and physical disabilities - lots of wheelchairs. They are not fussed by the trachy or the gastrostomy. But since the boy doesn't yet appear particularly mentally affected by all the treatment he's had, it feels not quite right. Perhaps that's merely my prejudice.

But we still need to sort the statement of special needs. The wife is chasing the local authority.