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.

Want you to know

Too much knowledge.

The boy wanted to see auntie. Had to tell him no. She has a cough and is in bed. He said "like Mummy" (she was ill a couple of weeks ago). I asked if he slept when he was ill. After saying "no" vigorously he became thoughtful. After a moment, he said "no", if he was ill he went in an ambulance to hospital and saw a doctor in a blue hat. Sometimes it was a man, sometimes it was a woman. He's right. But rather sobering.

Gatekeeper

Went to visit a school for the boy. But no assessment, no school.

Saw a nice nursery on Friday. Looked good for the boy. It's small. Plenty of teachers and assistants. hey have a Partially Hearing Unit attached, so would be able to deal with his signing and language issues.

But... isn't there always a but. But, we live too far away to stand any chance of getting in by normal routes. The only way in would be with an assessment of special needs. This would bump him up the queue. Like any school, they won't want him unless he comes with a carer (for the trachy) and funding. We have in principle funding for the carer (precise terms to be defined) from the health authority (I think).

I thought there was a way through if we didn't get the assessment. The school has fee paying places. Although we could pay the fees, then the health authority won't provide the funding for the carer and we would have to pay for that as well. We could afford the fees but I doubt we we could also afford the cost of the carer. Seems a bit mad to me but the health people insist this is how it is. I'm sure there is a rationale but it escapes me.

Boy from school

The boy makes a post-it note collage and the wife writes his medical notes.

The boy had the start of his Special Needs Assessment yesterday. Only the start. He is being referred for an assessment. This will take weeks or months to be completed. Not clear whether the assessment will identify special needs. Without this he won't get extra funds at school. All rather depressing. After all we've been through, this feels like yet another thing we have to fight for.

Communication Breakdown

How will the boy communicate with the world on his own?

The issue of whether and when the boy should go to school came up. Although we live in the present, there are some things that force us into forward planning. Schooling is one. We can't just decide he can go to school. There seems to be a long process that we will have to go through before this can happen, if it can happen at all. He will need a Special Needs Statement. We will have to start it now if we want him to go to school in September. It's not clear whether he can go to a normal school or whether they will prefer he went to a special school. We don't have to send him to school until he's five. But we don't know how he'll be come September. It's just such a long way away.

The trachy and the recent surgery pose him additional problems. His poor balance makes him vulnerable to other children's play. His eye problems compound that. The trachy means he needs permanent medical supervision. And his speech, such as it is, is just about intelligible to us. But who knows what teachers or other children will make of it. His language is a mixture of signs and words. No real sentences.

But I get ahead of myself. He has the start of the Special Needs Assessment tomorrow. And we are meeting a local nursery on Friday. If they don't provide someone to do 1:1 for him, either the wife will have to be with him or he can't go. And the local authority don't have to provide anything for him before he's 5. Never straightforward.

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.

Dance of the mad - feet on heat

One of those days that threatens to push you over the edge.

You wonder if you really are going nuts. Not "nuts" in the lazy, "I'm so wacky" sense. But "nuts" in the "Has the balance of my mind been affected?" sense. Blogging may be "like counselling but without the patronization and impossible-to-keep appointments" but it doesn't come with medication.

Absolutely shattered from the two horses running in opposite directions that are work and trying to look after the boy while the wife was ill. Too much duty, to the boy, to work, to the wife. Nothing left for me. No way to recover over the weekend.

Felt resentful that auntie had invited us and Granny over for lunch so I would get less time to myself. How mean am I?

Grouched around aunties like a bear with a sore head. Played a bit with the boy but otherwise behaved pretty unsociably. Just wanted to be left alone.

Then the boy threw up. I went into panicky parent mode (vomiting is often a precursor to illness, especially as his last chemo was a few days ago). Took his temperature. Whilst waiting for it to be ready, Granny comprehensively put her foot in. She said "I'm sure he's fine. I've had two children". She tries to be helpful but there are times when her near denial that there's anything wrong with the boy is not only unhelpful but actually upsetting as well. I snarled "And how many times did you have to call an ambulance when we were little then?". Couldn't bring myself to talk to her after that.

The boy's temperature was actually fine. After a bit, we took the boy home. He looked peaky on the way back. When we got in, we took his temperature again. It was high. Going to hospital high.

As he had no other symptoms, the hospital said to wait an hour and re-do his temperature. We did and it was 0.1 degrees away from going to hospital. In the meantime I was banging my head against the wall. Not sure how much more I can take unless there's a break between illnesses. Another night in hospital at the moment doesn't bear thinking about.

We managed to keep him home overnight. His temperature went up and down but never over the magic 38.0 degrees. His secretions have changed colour which is a bit worrying. Got some sleep but not much. Always expecting to have to leap into action and get him to hospital.

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.