No Train To Stockholm

Tough day. Tiring day.

The boy was up very early. Not enough sleep and clearly being unwell made a difficult morning. Had to bundle him out as soon as possible to to to the hospital for another IV antibiotic. The boy wasn't happy about going out, wasn't happy about going on the train and wasn't happy about going to hospital. Nor was I.

After the IV and some paracetamol he cheered up. But when we got home I was exhausted. After the wife got up, I went to bed for an hour. Unheard of for me.

Didn't feel any better for the sleep but it must have helped. Then in the afternoon we had to do the hospital trip all over again. Taxi we ordered didn't arrive. So, we had to take the tube again. Hard work lugging him and the laden buggy up and down station stairs. But the boy enjoyed the trip and on the way home was happy to sit at the top of the stairs watching trains coming in and going out.

Not a good couple of days for me. Not exactly restful or fun. And not good for the boy. He's still pretty unwell, with a heart rate that's too high, even if his breathing is still ok and not needing oxygen. More hoping that he has a good night and doesn't try to overdo things tomorrow.

Familiar ground

Spoke too soon. Was a day off but not the first without a trip to the hospital.

The boy was cranky in the morning, in the way that he does when he's not well. The wife had arranged for the hospice to look after the boy for 3 hours, so we could have some time together.

Nice idea but didn't quite work out. Spent the first hour looking after the boy, trying to work out if we should take him to the hospital and discussing him with the consultant. The hospice did shoo me and the wife out briefly for a coffee - a strange experience to be outside with her without the boy and him not underoing an operation. But when we go back we agreed with the hospital that he should go in for a check up and IV antibiotic.

While we waited for his appointment, we did his trachy change, as the monthly change was due. He was very upset. "No tapes, no tapes". He was kicking and screaming so much so I had to hold him down pretty forcefully. Not a pleasant experience, though he hardly noticed the trachy itself being changed. The wife's hands were shaking very badly afterwards.

I took the boy to the hospital on the train. He was crying all the way there in the buggy. "No train, no train". "No doctor, no doctor". Got him into a cubicle at the hospital and had the inevitable wait for a doctor. I sat him on my lap to watch diggers on the building site opposite and after 10 minutes or so he forgot he didn't want to be there. This was reinforced when he remembered that if he got into bed he could watch kids TV. By the time the doctor had been and he'd had his IV antibiotic, the boy was rather enjoying himself and it was "no home, no home". I let him have his way as it was rush hour. But eventually, there were programmes he doesn't like and he agreed to leave.

After we got home, we got a call from the hospital to say that he does have an infection but they don't yet know whether the antibiotic he is on is the right one. We will find out later. In the meantime, we have to go back to the hospital in the morning and evening on Saturday for further IVs and then once a day thereafter.

And, of course, after his bath he insisted we change his trachy tapes, despite me telling him they didn't need to be done. Routine is routine for the boy. Try to vary it at your peril.

So much for my day off without going to hospital.

The Sidewinder Sleeps Tonight

Weary few days. Hard to know where to start.

Good things: got home on Wednesday to be told by the boy that two men had come and "old bed gone". He had been too big for his hospital cot for some time. We would have bought him a new bed ourselves but the Community Nurses said he needed a special one. It had finally arrived. It was sweet to see how excited the boy was with it. Happily telling me how big it was and demonstrating the fact by flinging himself from one end to the other, before showing me how to bounce up and down on it.

Less good: the boy has still been having fluctuating temperatures and high heart rate. All controllable by paracetamol or ibuprofen. But worrying nonetheless, since it seems to have been going on for a couple of weeks. And it was time for his rescheduled gastrostomy operation, postponed two weeks ago because he wasn't well.

Usual restriction on his overnight feed and early start. Always tricky as there is such a lot of his stuff that can't be pre-packed. Nevertheless, got to the hospital by 7.30am. The boy was happy enough to have the car journey and to play in the ward playroom for a couple of hours. But then started to get bored and restless. Wanting to go home. Just as we thought he was going to get bumped onto the afternoon list they called him down.

I had wondered how they get the tube out and the new one in but hadn't wanted to ask. The wife did. Unpleasant. The ENT surgeon cheerfully said "it's easy". You unscrew the end. You pull out the jejunostomy tube and chuck it in the bin. Then you feed a guide wire down the tube and wiggle it back out through the mouth. Stick a little balloon on the end of the tube then pull the whole thing out of the mouth. And the new one goes back the same way.

The wife had to go to another hospital for a different appointment about the boy. So, I looked after him following the operation. Inevitably, when he woke up there were innumerable questions on the "where's Mummy?" variant. He was cheerful, despite a small bleed from the trachy. But, understandably was rather hoarse. Then, the "go home" pleading until they were ready to let us go home when it became "no home".

Got the boy home to bed ok. But his temperature went up significantly, as did his breathing and heart rates. And he needed a fair bit of oxygen. Bit dicey for a while. Have to hope we can get him to rest enough to overcome whatever is the matter now without going to hospital. Just so wearying to go from one worry to the next with precious few nice bits inbetween.

Father and son

Fathers' Day.

Felt really worn from a week at work and looking after the boy for the whole of Saturday. Neither I nor the boy got enough sleep again and so were cranky as a result.

He went to the market with Mummy but not for long. So, only had time for bath before they returned. Wife had kindly done my ironing and bought a present. The boy had decorated the card.

Spent the day quietly, as the boy was more clearly under the weather from his infection. Temperature going up and down but nothing serious yet. Had to make another train trip to the hospital for his antibiotic. He loved the journey but unhappy to leave the train. We spent a while on the railway bridge so he could watch trains coming in and out. Have promised him another trip this week (he needs a check-up at the end of the week).

All in all a strangely tiring weekend. But at least things with the wife are improving. And so to bed.

It's not unusual

Potties, trains and antibiotics.

Before starting to look after the boy, I was having coffee thinking about work and the need to be at home more over the coming months. Worrying about how to manage it and deliver at work. Tired, my get and go having got up and gone.

For reasons that we don't understand, his secretions on Friday night and Saturday morning were copious. Every few minutes his cough sounded as if he was gargling with mouthwash. The amount of suctioning left me knackered by 10am.

I was wondering with dismay how I would get through the day when the boy looked disconcerted, pulling at his trousers. I asked if he needed a wee. He said yes. I asked if he wanted to use the potty but with no great expectation, as he had refused previously. To my surprise he said yes. I whipped his trousers and nappy off, plonking him on the potty before he could change his mind. He concentrated hard for a moment, brows furrowed, looking down between his legs. Then he did a wee. He was excitedly trying to tell baby panda what was happening. It was all I could do to grab him to keep him on the potty before he half-stood up and sprayed me.

Once he had finished he looked at me with an earnest expression and said "Clean my potty." The first sentence I have ever heard him utter. I felt ridiculously proud and asked him to repeat it. Sighing, he did so, quite slowly, as if talking to a someone who is a bit simple but needs to be humoured.

Later his friend Z came round for the first time in a couple of months. Z was having a clingy time and it was interesting to see their roles reversed. The boy was the adventurous one. Z was the one not prepapred to leave Mummy's lap to get a toy.

When they went home, me and the boy went to the shop. The boy is quite the confident shopper now. Knows what is required. Milk and cakes for auntie. Magazine for him. If I try to get anything else he shakes his head crossly, saying "No more. No more." stomping off to the checkout to pre-empt further discussion.

Spent a while at aunties. Just about to get ready to go home. My thoughts turning to my rumbling stomach and handing the boy over to the wife for a break. Then the wife rings to say that the blood cultures taken earlier in the week have grown something. Possible line infection - gram positive something or other. He needs to have an IV antibiotic. And that means a trip to the hospital.

Thoughts of my late lunch dispelled, I ask the boy if he wants to go on a train. He readily agrees, especially as auntie is going to come. Realise it is probably a year since he last went on a train. He was very excited. Wanted to sit on the seats and bounce up and down. Slightly disconcerted by the noise (an ear test last week showed his high end hearing loss is not too bad). Very, very upset to get off. Only bought off with promises of ambulance hunting. Pickings are slim with only an ambulance car tracked down. Happy to press buttons to go up in the lift. Screams, tears and hitting his head when he realises we are going on the ward. I try to explain we will be very quick but he is having none of it. Only resolved when I go and hide. Then he wanted to look for me. Only on the ward for 10 minutes. Luckily, the antibiotic is a "push" not an infusion. And then off home.

So, he probably hasn't got a normal kiddie illness. Not a surprise. Our efforts at normality seem constantly doomed to fail.

Mother

Another painting. This time Mummy. An altogether more cheerful picture. Yellow hair, pink top and pale blue trousers.

And we have heard from the US hospital that they have sent their second opinion to the UK. We have an appointment tomorrow. Given the short notice, we weren't sure we'd be able to get nursing cover to allow us both to go (we don't want to take him). But the hospice have helped us out. Made for a brittle evening last night. Both of us focusing on the practical issues for the appointment, rather than the emotional implications.

This corrosion

Meeting with Big National Hospital on treatment options for the boy cancelled. No idea when it might take place.

There has been no feedback from the US hospital on their second opnion. It was expected last night but nothing was received. We were supposed to see the Big National Hospital to discuss the second opinion but only heard half an hour before the meeting was to have taken place that it was cancelled. The wife and I on tenderhooks about the meeting and have to continue to play the waiting game while the boy is still having no treatment at present.

Anxieties not helped by long and difficult discussion late last night with the wife about the declining state of our relationship. Things I've been trying to tell her since the autumn seem finally to have hit home. Not really the time for it. Not sure what to do about it, given I had resigned myself to our present arrangements.

Postales

Cup your hand in a fist with the arm straight up at the elbow in front of you. Your arm is the spinal column. Your fist the brain stem. Now, take your fist and cup it round your other fist. That's what happened to the boy.

I remember seeing that first brain scan like a freeze frame black and white photograph. The tumour and fluid sac like a small white orange. The brain stem squashed in a grey crescent to one side of the skull. That he was functioning at all was a surprise. That he hadn't had had a seizure amazing. So said the doctors.

I remember thinking "He's going to die. No child can come back from that and survive." There's a website called post a secret. Mine is that I can't look at him without thinking he's going to die. For the wife's sake I never say that to her, since hope keeps her going. It remains my dirty, guilty secret.

It's constantly going through my head at the moment whilst I wait with impotent, mounting frustration for the boy's details to get to the US hospital. They still hadn't arrived on Friday afternoon. Makes me want to rush off the Big National Hospital to shout and scream at the administrative staff that this delay is putting the boy's life in danger. But I won't. I'll ring and ask politely that they check with the courier company the package's whereabouts. Ahhhhhhh!!!!

Infected (7" mix)

A rather mixed day yesterday. The boy is pretty well but prospects for going home seem to have receded somewhat. And he's confined to his room.

The boy is now consistently breathing normally in air when awake (and needing very little oxygen overnight). Is happy and playful but starting to talk to little panda about wanting to go home. He watches far, far too much TV. But what can you do when he's stuck in bed?

There was no sign of the respiratory team coming to give us the results of last week's CT scan. They said they were coming in the morning, then in the afternoon, then after clinic. But they never showed. No explanation. The wife was furious and in the evening and subjected me to a tirade against them. Her main point - with which I agree - is that for us parents it feels they give us little or no attention because we are not on the respiratory ward. Out of sight, out of mind is how it feels. This can seem a major difficulty in the Big National Hospital. If you have one thing wrong - like cancer - then the care is excellent. But when you start to straddle more than one specialism, there is a tendency to a silo mentality which means they don't always work well together. The boy is a classic example of this complex situation.

The boy has had minor temperatures every day for the last few days. They took samples last week. The results came back yesterday. He's got some sort of e.coli gut infection. They are considering how and whether to treat it, since he doesn't appear to be suffering much at present. But in the meantime, he's not allowed out of his room in case he infects any other children. This is hard on him and hard on the wife, trying to keep him amused in a confined space.

Oh, and we restarted chemo (etoposide) yesterday. This is while we wait for the doctors to finish their Easter holidays and decide on options for the boy.

Wake Up

Easter weekend in hospital with the boy. He finally seems to be recovering. But only because the trachy cuff is up.

Spent the weekend in hospital with the boy while the wife had a rest. Long days. Here from 8am until gone 9pm. Ward short staffed so had to do all cares. No breaks offered on one day. Very tiring.

They boy's sleeping pattern all messed up. Won't go to sleep until after 10pm and up soon after 8am. But at least he is starting to spend some waking time off oxygen. Still needs it overnight but only small amounts.

Boys is cheerful except when trachy cuff deflated and he can speak. Unhappy at deflation because of secretions that then come down. But then so pleased he can speak again. Won't shut up. Always gabbling about something. Then so upset when I tell him it has to be reflated. Points to his mouth and says no - not able to speak. Tries to fight me off and then cries when it is up and won't look at me for a while. Cuff being up makes him subdued, partly he doesn't have the signed vocabulary and partly he misses speaking.

At least being off oxygen for a few hours means he can more easily leave the room to play on the ward. He likes playing with water. He will spend ages at a sink with the tap running putting water in a plastic cup and pouring it into a bowl. When the bowl is full he empties it and starts all over again.

Had a welcome visit from auntie, the pandas and little Stevie (Gerrard). Points to a picture of Stevie on his wall and makes the sign for big. Then points to the little Stevie figurine and makes the sign for small. Then throws both hands in the air, noiselessly shouts goal and pretends to bite his shirt (like Gerrard's goal against Olympiakos, which he loves).

Got him out of bed and in a little car which he can sit in and walk around the ward. Sometimes he wants to be chased, which is good for his weakened leg muscles. Even got him outside on the little balcony where he could play on the little slide. His first fresh air in a month. Have to be careful to do it when the balcony is in shadow otherwise it is too bright for his eyes to cope with.

Restart chemo on Tuesday, hope to get results of the CT scan of his chest and (fingers crossed) to plan to come home.

Possible worlds

As expected, not a great range of options. The boy had a CT scan. Woke up cheerful but then disgraced himself.

Saw the oncologist. After the usual discussion of the boy's current health, we got down to the real business. What options are left to us? To be honest, although she took her time going through them, I can't quite remember but they seem to be:

- curative options:
(a) further surgery: not on the cards. The surgeon is not prepared to do it because of the location and the high risk of blindness and paralysis.
(b) radiation: either Gamma Knife radiotherapy or re-radiation like before, which is being trialled in the US. We will have to wait for clarity on whether he is eligible for either. The gamma knife seems particularly worrying since the residual tumour is on the brain stem, so risks are high. Re-radiation doesn't seem too hot since it didn't do much last time.
(c) chemotherapy: Boston Protocol is being discussed. Don't know much about it and depends if we can find a way of getting thalidomide down his gastro tube.

- management options:
(a) continue with etoposide on the grounds that it did a bit previously and the risk of secondary tumours from what would be a toxic dose doesn't matter since he is unlikely to live long enough to be affected.
(b) put him in a study: to test doses and effects of new chemo. Not wildly attractive for him to be a guinea pig given his frailty. He isn't eligible for most and would most likely mean spending our remaining time in hospital.

Bottom line is that the location of the tumour rules out the option with greatest chance of success - surgery. And probably rules out the option with the next highest likelihood of success - gamma knife - for the same reason. This leaves us with re-radiation as a pretty poor third choice.

Have to face that the boy's chances of surviving - never high at the best of times - are now as low as they've ever been. Am always mindful of what the oncologist said eighteen months ago, that he might see his fourth birthday but wouldn't see his fifth birthday. But as the wife said, no point wasting time crying now, we will have plenty of time for that later.

Having had that cheerful news, we had to return to the boy to prepare him for his next procedure - general anaesthetic for a CT scan of his dodgy chest. He did not want to go down. He is starting to fear being messed around with by doctors. He cried all the way down and in the scanner room. As if the day wasn't stressful enough already.

On returning, I let him sleep for an hour and then woke him up. It was as if his personal sun had come out. He was bright, cheerful, playful and engaged. Was a pleasure to be with. Managed to get him to do a little walking, holding my hand. After a month in bed his little leg muscles are terribly wasted. We also played "fetch" in which he throws little plastic bricks and I fetch them. The wife insists that this is good exercise for him after spending so much time just lying down. Perhaps. But it's hard exercise for me too.

In the evening we had the usual tears about deflating and reflating the cuff on his trachy. And a worse than usual tape change. He had been fine with this for two years but over the last couple of weeks it has become a real battlefield. I have had to do the holding of the trachy while the tapes are changed as my wife is not strong enough to hold him down on the bed. With a slippery trachy no easy task.

We had just finished when the night nurse arrived. He went balistic, waving at her to go away and saying no, no to her and tellling her to go home. She had a bad journey in and was very offended by his behaviour, saying if he had been in an open ward she would have gone home. She is very good and we can't afford to lose her. The wife took the nurse outside to placate her whilst I tried to restore order with the boy. Wasn't easy but a mixture of bribes and threats restored an uneasy harmony. He even said sorry to the nurse, albeit with ill-grace.

An unhappy end to an unhappy day.

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?