Love Vigilantes

The weekend's over. Back at work. But we still haven't made a decision about what to do for the boy.

We did discuss the pros and cons of the options last night and the night before. But we are still in two minds. The chemo protocol open to us doesn't offer a cure. Might shrink the tumour a bit but equally might give him leukaemia. But so hard to decide that we've done all we can do and so we should do nothing.

A harder decision than I imagined. After all, it's only a simple A or B decision; do nothing or do the protocol. So, we are going to see if the local hospital have time to see us to facilitate our decision (they helped out when we were trying to decide about surgery in the autumn). And the wife wants to get extra information from two doctors in the USA. Though, this feels like a delaying tactic.

The School Song

Have lots to do at work. But have spent much of the last two days trying to sort out schooling for the boy. Perhaps it's all pointless anyway after the latest meeting with the consultants.

We have been trying to get the local Special Educational Needs Assessment Service to do what they're supposed to do - an assessment. Their current position is that they won't until he's in a school. They've offered the local special school but no mainstream school - we have to get a place in those ourselves. We've seen three local schools and think one is appropriate. But that school says that he doesn't meet the special needs criteria. So, I've spent some considerable time in the last two days writing a long letter setting out why he should go to a particular local school. The local school aren't exactly jumping over themselves to have him so I can't say I'm very hopeful about the outcome.

Also, saw the oncology consultant about the next steps for the boy. Not a helpful picture. Gamma knife readiotherapy is not recommended, as it will only treat the tumour not the tumour plus the area from which tumour was removed, so giving significant risk of recurrance. The hospital had asked for a second opinion from America but they haven't even got the papers yet (sent surface mail), let alone given an opinion. Chemo alternatives look experimental at best and as if they would hospitalise him for months on end or they are just drug trial treatments with no curative intent. In the meantime, the boy's off all treatment and we just wait until we get something back from America.

A difficult waiting game.

Walking home through the park

Good day. Not so good day.

The boy had a good sleep. None of his recent tendency to be awake for a few hours in the early morning.

After the chores of the washing up and cleaning the nightime suction pump, we went to the shops to buy cake. For auntie. For that was what he really, really wanted on waking. He was delighted to see big panda and chi chi panda and to make them tea and me coffee. He was much less delighted later to have to leave. After a small 'fling yourself on the floor and sob pitifully' tantrum we left auntie's house.

However, we didn't get very far. The next house along in fact. While he tried to either plead with me to go back or have a strop to go back, I prepared his medicines in the street. Bit unorthodox. Got a few funny looks but reasonably practical. Was medicines that need to be dissolved in pots with either water or sodium bicarb. Good thing he didn't want to go anywhere for a while. Eventually, he lost interest in me and busied himself with some syringes and end caps. A source of more funny looks. Never seen myself as the local nutter before now but it's not normal behaviour.

Went home to Mummy. After a rest he was persuaded to go to the park on the promise of feeding the goats. Luckily the petting zoo was open and he was able to feed the goats and wave at the rabbits.

We had tea at the cafe and then went to the playground. He went on the swings, where he is very keen that you stand infront so he can kick you from behind. A metaphor for life, I think. A lesson for us all. We are adults but the kids are in charge.

Got home late. He was tired and after going to sleep we took his temperature. Was up, as was his heartrate and resps; and he needed oxygen for the first time in a few days. Perhaps we'd overdone it with the trip to the park. I hope the next entry won't be from hospital.

The Moon, The Sky

My Saturday with the boy. A reasonable day. He was in a good mood, despite vomiting from the chemo in the morning. Happy to read books early on. Then went to aunties' house. Rather too much Cbeebies and then a tantrum on leaving. But by the time he got home he was calmer and matter-of-factly told Mummy that he had been sick in bed but had then stopped. Then the bed had to be cleaned with new sheets.

After he went to bed I went for a short walk as the last of the sun was setting. A melancholic time of hazy tiredness. The wife always wishes on a full moon. But I decided to wish upon a star (as life is a like a song title). Wishing for good news from the hospital on Thursday (consultant appointment). Wishing that there is something positive that can be done for the boy.

I hope it was a star - it's wrong to wish on space hardware.

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.

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.

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:

Inside + Out

Off to see another school for the boy. Our local.

We've seen one school for the boy already. Two more to see this week. Today's is our local school. It's a large Victorian building. Has a reasonable reputation. Would be fine if he were normal. But he isn't. Want to see about class sizes. Too large and he will just get trampled in the rough and tumble of the classroom. To say nothing of the playground. Will have to go through the boy's sorry history yet again.

Two more days until he gets to the end of this chemo cycle and he has his week off. He was sick on Sunday morning but not Monday morning. We spoke to the hospital and have upped the dose on his anti-sickness drugs.

Narcotic Influence 1

Tricky day. Got off to a bad start. The boy was very sick in the early morning. He improved during the day. But it's not clear why he was sick. Chemo?

The boy vomitted several times in the early morning and retched a lot more. Hope we got all of it before it went into his lungs. He looked very unhappy for some hours but refused to have his trachy cuff inflated for long.

He improved during the day. But we had to try to get him to take it easy during the day, so he would last until bedtime. In fact, he did pretty well all things considered. Was generally cheerful and played much as normal but, unsurprisingly, didn't want to go outside. Only became crabby and difficult in the hours before bedtime.

Was probably the chemo, even though the sickness was many hours after it was given. But we have to give it nevertheless. Another weeks chemo to go before his week's break.

And as a postscript to the previous post. We did get the blood transfusion done on Friday. But not without more messing around. Got the boy into hospital for 10.15am. Blood test done quickly but had to wait until 2.30pm for the blood. Didn't get the boy home until 7.00pm.

Bloodsport for all

The boy had bloods taken yesterday. Showed his Hb is low (haemoglobin). So low that he will have to have a blood transfusion. But when is the question.

The community nurse came yesterday to take his regular blood samples. Got the results back yesterday afternoon. His neutrophils are falling but we expected that. It's the chemo that's doing it. But it also showed that his Hb is low, which we guessed as he is looking so pale and tired. If it gets too low he has to have a transfusion. It is marginal at the moment but since his Hb won't rise for a bit, there's no point in waiting.

We have contacted the hospital to try to arrange it but are taking time to sort it out. Looks like it won't be today (it takes a while for the blood to be ordered and delivered and then four and a half hours for the infusion itself).

He did need a little oxygen overnight but we have to hope that he can last another night without it becoming too serious and then he can have it tomorrow.

Undercurrent

More of the same for the boy. He's looking extra pale. Had a better day than before - less tantrums at least. Heart rate rather high overnight.

The boy is relatively ok. More hair gone. Very few tufts left. Still looks pale and tired. But otherwise cheerful on Sunday. Overnight less good. Heart rate high and secretions starting to look a bit yellow.

Although he was ok, I still felt stressed. It's the constant bracing against him getting sick and having to go to hospital.

Get better

My day with the boy. He's really chemo tired.

He had a good sleep but woke up looking washed out. He's very pale and has that sickly pallor that chemo and the assciated low blood count (Hb) brings. Content to watch TV for an hour or so, then play for an hour and a half and then get very cranky and wear himself out. Then he'd watch TV for an hour and start the cycle all over again.

Really not keen to go out of the house. Not sure if it's the cold weather, his balance of what. Eventually persuaded him to go to the local shop with the promise of auntie afterwards. He was happy enough to do it but needed a rest when we got to aunties - but refuses to contemplate a nap. An ok day.

Where were you hiding when the storm broke?

Poor boy has that awful in-between chemo head.

Most of his hair has now gone. Last time it thinned as it fell out. So it looked fairly even until there was none. This time is a lot more clumpy. Odd tufts here and there, like some sort of mad uncle. And those big red scars.

Busy week at work. Early start to attend press photocall. But stayed out of shot. We were on the TV news, so big deal for us. Everyone going out to celebrate. But I came home to the boy. Quite a contrast. News is about the boy's secretions and what was on Cbeebies, not the outside world. Always amazing how with a sick child it overrides everything else. And, surprising how you forget you had a whole day of things other than the boy. It's when the two overlap (like when the wife was ill) that the real difficulties arise. Perhaps that's the same for parents with healthy children. But I wouldn't know.

Come together

The boy had his end of chemo cycle check-up. New cycle starts tomorrow.

Despite the snow, a trip to the big hospital in a car for the boy and the wife. Off to see the oncologist for a check-up to pronounce him fit enough to start the next Etoposide course. They do the weights and measures bit. He's not really put on any weight but big news is he's grown nearly 1cm in two months. This is great as he's hardly grown over the last year. The oncologist thinks his eye is able to close a bit more than a month ago. Can't see it myself (sic). And the new chemo is prescribed and will start tomorrow.

Me & My Charms

The boy's chemo-cranky.

The boy went to auntie's in the late afternoon. Had a happy time. But tired and fractious from the chemo. Hair falling out everywhere.

Was very cross at being made to leave. Pulled his socks off and threw them away to avoid having to leave. Twice. The process of getting him shod and coat on took over 20 minutes. Even the pandas didn't help in pacifying him.

Trying to do his trachy tapes change was a bit of a nightmare. He was crabby. His neck needed significant cleaning as it had lots of hair around the stoma. Made worse by him grabbing his hair, which came off in tufts and went back over his neck.

Hairdresser on fire

What is it about hair falling out from chemo that is so upsetting?

- It has such a tendency to dehumanise. No wonder they use it in the military and prisons. The boy looks so different with hair and without.

- It is such a visible signal to everyone that he is unwell. It's cancer's own red flag. People react differently to him and are much more likely to look on him pityingly as the sick kid.

- People look more ill without hair, everything is pale, accentuated by a lack of eyelashes and eyebrows.

- It happens so quickly. Last time, he went from a few hairs on the pillows, to clumps falling out, to virtual baldness over the course of what felt like 4-5 days.

- It shows what is otherwse hidden. For the boy there is nothing to disguise the railway map of scars on the back of his head. This time the scars are so fresh (some scabs still in place) that it's more disconcerting than the single more established scar last time.

And, the boy has the extra risk from hair, eyebrows and eyelashes falling in his bad eye. Without the ability to blink properly, his bad eye is regularly bloodshot at the moment - more eye damage seems a certainty. But of course there's the trachy. Trying to keep hairs out of the tube. They get everywhere, wrapped round the trachy tube itself. Trying to avoid them going in the tube when suctioning. Such things make it a relief when the hair is finally gone. And it's going fast at the moment.

Despertar

Looking after the boy again today. It's going to be a long day. Am in a very bad mood and tired with it.

The reason for the tiredness is obvious from the last few posts. As for the bad mood, it's the wife's fault. She can't help getting ill. She has tried to manage with the boy even though she's ill. She hasn't looked at all well. Then she blew it last night and all my sympathy evaporated.

She has been too ill to eat for a few days. She started trying soup and dry crackers a day or so ago. Fine. Then she got hungry. Despite my protestations she had a prawn curry and a bottle of red wine. Bad. Very bad. All too predictably it made her ill. So a very late night for her and me. And so it looks like she may be ill for a few days all over again. Terrific.

As for the boy. He's getting increasingly tired at this point in the chemo cycle. And his hair is looking oddly spikey. Means it's thinning as it starts to fall out.

One Small Step

Managed to go to work for the morning. But had to return at lunchtime to resume looking after the boy. The wife returned to bed.

Went to work early to try and catch up on what time lost the previous day. Always clock-watching as the wife did not look well when I left. Predictably, got a call late morning to ask me to go home.

Returned home to find yet another new carer. As with the previous day, spent the time explaining the boy to her inbetween suctioning. She was not much use to me. Didn't even get ten minutes to have a sandwich this time. Also, after three days without Mummy, the boy was more clingy. Wanted to be carried a lot. Really taking its toll on my arm. Am suffering from almost permanent pins and needles in it. Making it difficult to get into a comfortable position to sleep.

It has been such a hectic few days with no time to think, that I forgot my mother was coming over in the atfernoon. When there was a knock at the door I answered it and just stared at her blankly in surprise. She looked rather hurt. Ooops.

Trying to keep the wife away from the boy to reduce infection risk, so did all the bathtime routine and she only came in to do the trachy tape change and say goodnight. He keeps asking for her but so far saying she is not well and in bed is mostly holding.

Tried not to do work at the same time as looking after the boy. Made the experience somewhat less stressful. Last day of IV antibiotic and last day of this chemo cycle. Immunity low and going to get lower over the next week or so. Keeping our fingers crossed and not taking him out where there are people. We soldier on.

Injured Bird

The wife was still ill, so looked atfer the boy again. Goodness knows how she does it five days a week, its exhausting.

The wife was far too ill for me to go to work. She slept for nineteen hours, only waking for the doctor.

The boy had a bit of a lie in. Allowed me to do some work - the curse of the BlackBerry. He'd had a good sleep and so was cheerful. We played a bit and I gave him his chemo before the Community nurse came to give him his IV antibiotic. He sat patiently in his cot while she got it prepared and was stoic when she changed his central line dressing. Meanwhile I'm juggling three phones (mine, the wife's mobile and the home phone) taking calls on all and trying to re-order oxygen and book an appointment at a nursery. Multi-tasking hell.

The boy made sure she put on her shoes and took her handbag when she left. She hadn't been gone long when the doctor came. A cross between a social call and update really but had to take her through the boy's recent back story and eye appointment information. While she was there a new carer arrived (the usual one comes for three hours a few times a week). Wasn't much help as the boy needed to get to know her and I still needed to do suctioning (she would need training before doing so). Managed to grab ten minutes for a sandwich but that was all.

Did all the prepration for the bath and night time. The wife got up long enough to help with the tape change but that was all. Had to clean all the equipment and make feed for the boy's night. Eventually finished at nearly 10pm. Hard work doing everything solo.