Tuesday, 30 January 2007

City Sickness

The wife was ill today, so returned home early from work to look after the boy.

The wife rang me soon after I arrived at work to say she was not feeling very well. She thought it was what she ate the previous evening, which I also ate. Not very inspiring to hear since I had half a bacon roll in my mouth when she called.

She did soldier on to take him to hospital for his eye check. As his right eye has no feeling and won't close, it is at some risk of permanent damage. They've found some scratches on the cornea and say the vision is "frosty" so we have new medicine for it and have to patch the good eye for an hour a day to force him to use the bad one. He is becoming too reliant on using one eye.

When she got back from the hospital, the wife rang to get me to go home. She looked terrible when I got in - goodnes knows how she managed the trip. She was slumped by a radiator looking wan.

I took over cares for the boy and she went to bed. We made coffee for me and tea for the pandas. He painted a picture for Sandy (the fluffy dog). We played with his Thomas the tank engine train set and watched it on TV.

With a bit of coaxing, I got him undressed and bathed. He took great delight in washing my face, which then extended to my hair. Got him dressed and did preparations for his trachy tape change. As he was behaving so well and showing his Postman Pat soft toy what was to happen, I did the tape change on my own for the first time. The wife will be livid when she finds out (two people are supposed to do it) but he was never at any risk. Had he thrown a strop, I might be less sanguine. There you go, the boy's life is a series of risks. What's one more?

Monday, 29 January 2007

Only This Moment

Another good day.

Had my lie in but still felt oppressively tired. Then did the ironing and my tax return whilst the boy and the wife went to the market and thence to auntie's. Oh the excitements of my life.

Notwithstanding my sarcasm, it was nice to have him back from aunties. Did some gentle playing and painting with him.

Felt ridiculously pleased again with the day and the time with him. Almost too extreme a reaction. Emotions too often polarised, not often balanced enough. Don't know if it's the permanent sleep deprivation, the cost of trying to be even-tempered and functioning at work or something else. Who knows?

Sunday, 28 January 2007

Feel Good Inc.

At last, a good day. Tiring, but good.

There was nothing special about the day. The boy didn't have a lie in. We didn't do anything terribly interesting. He didn't achieve any developmental milestones. But we were at home and he was cheerful. And that's something in itself.

This was one of those days to enjoy something approaching normality, after having spent last weekend in hospital. It was my day to look after him. He woke up as soon as I took over. He woke in a really cheerful mood.

He watched TV for a little while, showing the animals the various characters. I gave him his chemo. We came downstairs.

He purposefully wanted to help washing the suction pump, taking the other one out of the steriliser and drying it, and helping with the washing up. "Help" is his word of the moment. He drags his chair to the sink and clambers on it so he can see what's going on.

The nurse came to give his IV antibiotic. He was very good. He scrambled upstairs to sit on the armchair in his room while he patiently watched her prepare the tray. Offered her his line and then helped tidy up and put away.

After waving her goodbye, we got packed up to go to auntie's. To my huge pleaure, he walked all the way there. First time he's done this with me since the operation at the start of December. May only be 500 yards or so but really good for him. He has been so reluctant to walk outside.

Rather sweetly, at auntie's he made me sit in a chair while they made tea and coffee. He just loves the process of making tea and coffee and I loved the fifteen minutes sit down.

We all sat on the sofa while auntie and I had our tea and coffee. He watched TV like the Queen Mother (so says auntie) as he has a cushion on his knees and his feet wrapped in a velvet scarf. When we had finished, we went upstairs to play on auntie's bed making a house from her blankets and duvet.

Came home reluctantly to see Mummy. He did start to tire after returning home but gained a second wind before bedtime by playing the game where he puts me to bed, waves me night night and turns out the light.

A good day.

Saturday, 27 January 2007

Arms of Love

Long day at work today. Got home just in time for the boy's bath. Not usual for me to be so late. Felt disappointed about it. Missed out on seeing him properly - possibly a finite number of opportunities for that. I know we need the money but it made me wonder whether I am doing the right thing by working full time. All a bit complex since I'm not sure I would want to be with him full time either. And part-time wouldn't cover the bills.

Friday, 26 January 2007

Best foot forward

Better day yesterday. A relief after the stress of the previous day.

The boy had a good night and a happier day. Went to auntie's again in the evening. Still unhappy to leave but better behaved bathtime and tape change. Helped by having one of his teddy bears (Rupert) present for the bath and tape change. This meant that he was keen to show Rupert how to clean teeth, how to help nappy change and how tapes are changed. Being bossy makes him behave in a more grown up manner.

Day 14 of his 21 day chemo cycle. Found myself playing with his hair to check whether it's falling out yet. Only a matter of time. Everytime it falls out it takes that bit longer to grow back and returns that bit thinner.

Thursday, 25 January 2007

Private Hell

One of those days when I regret being a parent.

Tired from the previous night's worries. Got home to find the boy at auntie's. The wife said he'd been difficult for most of the day. Happy to make me coffee and play on auntie's bed. But did not want to leave. Made a fuss and struggled when I tried to get him dressed to leave. Wouldn't go in the buggy and had to be carried home, still struggling. All the while saying "no home".

Still crying when we got home. Became incandescent with rage when I took him for his bath. Shouting, kicking and twisting when I tried to get him undressed. All of which made him choke from secretions. So I had to periodically break off to suction him, allowing him to run away. Then he really lost it.

Pulling at his central line, thrashing around, banging his head on the floor. Eventually got him undressed and put him in the bath. But he was flinging himself around. The wife got him in a grapple hold and was trying to reason with him. He was way, way beyond reason.

Inevitably when we abandoned the bath on safety grounds, he got more upset and wanted to go back in. Eventually, forced him to get dry and into pyjamas. But decided it was not safe to change his trachy tapes. He did ultimately calm down and read a book and say goodnight.

I know all small children do this from time to time. I know that he doesn't get quite that bad very often. But the trachy makes it all much more dangerous. And it makes life seem that bit worse from what is already a low base.

Wednesday, 24 January 2007

Breaking Point

So, the boy's home. But who knows for how long. And the pressure's starting to tell on his parents.

The local hospital let him home yesterday lunchtime. He's still on IV antibiotics but its a once a day push. This should be given by the Community nurses. He seems a bit more tired than usual but otherwise ok. However, his secretions are copious, which is a worry.

The wife is tired. She had a bit of a rant last night about the local hospital. They rather leave us to our own devices during the day and use our night nurses at night. An element of a trade-off for the use of the night nurses we have always felt and usually accepted. This reduces the pressure on the ward staff during the day, as he is high maintenance, but increases it on us (especially her). But it also means they don't know much about how to care for him. They don't always check where the trachy box is or what's in it (a basic piece of trachy 101). They don't always know what the situation is with the cuff on the trachy - deflated or inflated. They don't always know suction length. And don't get much practice at how to suction him. Of course, if a nurse stays with him while the wife grabs lunch that is different. It will be a nurse with more trachy experience and we then go through all the whys and wherefores on his trachy and gastro care.

Trachys are so rare on the ward that most of the nurses have little or no experience or dealing with them. This means that their techniques, especially sterile techniques may need brushing up. The wife was ranting that a nurse tried to suction after having held the part of the catheter to go into the trachy - a big no no, especially on an immunity compromised child.

Had the same rant at lower intensity before bed. Left me trembling from too much adrenaline. Made it difficult to sleep. What I did have was anxious sleep, half listening for a call that he needed to go to hospital. He needed a lot of suctioning during the night - never a good sign.

With depressed fatalism, we feel it is only a matter of time (perhaps only days) before we are back in again. This is one of those times when you fail to see how you can continue to cope and want it all to be over.

Tuesday, 23 January 2007

Cleaning out my closet

Good news for a change. Subject to any last minute hiccups, we're going home.

The boy is considered well enough to go home. Nothing further has grown in his blood cultures. So, they are switching him from three-times a day IV antibiotics to one that is given once a day as a push. This can then be given by the Community Nurses for the remainder of the course.

Considering he's still not allowed out of the hospital cubicle, he was remarkably cheerful and tolerant yesterday. Even the trachy tape change went smoothly, by getting one of his toys to watch and him explain what was going on.

He always enjoys having his obs taken by the nurses. Tells them which toe to put the sats monitor on and which arm to put the tempadot under. He then likes to check the result of the tempadot, which he knows turns blue - see below.

Monday, 22 January 2007

Dangerous Times

The boy continues to recover. But he's bored of being stuck in a cubicle. This is going to make keeping him amused harder and harder.

The boy has been stuck in the cubicle for three days. He's feeling a bit better and starting to go a bit stir crazy. He's desperate to go out and play in the little car that he knows is on the ward. Up to now he has accepted that he cannot go out until the doctors say it is ok to do so. This may not hold much longer.

Unfortunately, the doctors are unlikely to say that it is ok for him to leave the cubicle. His blood results from yesterday were a mixed bag. Showed that his CRP is down (infection marker) and they haven't yet re-grown the bug that they found previously. But they also showed that he is now neutropenic again (no immunity). Has happened very quickly. A combination of the chemo and the infection destroying his immunity faster than last time he had this chemo.

The antibiotics affect his digestion and make him poo more often than normal. Combined with him scrambling round the bed makes for accidents. The wife had a bad one yesterday. Mess all over the bed, all over his legs and almost none in the nappy. Given he can re-infect himself in this way, she bathed him (below).

His boredom and frustration led to a very nasty trachy tape change last night. He was tired, wanted to go out and was thrashing around while we changes his tapes. Kept grabbing my hand which was holding the trachy. Almost pulled it off. All three of us got angry (rather unhelpfully), with me and the wife shouting at him to calm down (not very sensibly) and him shouting no all the time. As soon as it was finished, I scooped him up for a cuddle and he calmed immediately. A very stressful experience.

Sunday, 21 January 2007

Late One Sunday

It's Sunday lunchtime. I've the usual Sunday hangover feeling. Less any alcohol, more cumulative fatigue.

The boy's doing ok. Looked after him for most of the day yesterday. The wife only came for a few hours late afternoon. The boy did pretty well. Temperature almost back to normal. Heart rate still a bit elevated but hard to be clear whether that's the infection or antibiotics. He's on vancomycin. A heavyweight antibiotic that brings him out in a rash on the face, arms and legs. It usually gets worse the more doses he has, so it's something we keep an eye on.

But at least I've a few hours off today. I'm such a misery. My aim for time off is to interact with as few people as possible. Preferably no-one. The wife and auntie have called and received monosyllabic conversations.

Saturday, 20 January 2007

I Live For The Weekend

The boy is asleep as I write. He is comfortable. He may not be well but he does seem to be over the worst. I hope I don't speak too soon.

Had an ok night Thursday in hospital as did the boy. Still having high temperatures but the peaks were lower than the previous day. He was still asleep when the wife came to take over, so I could go to work.

Work was a bit more difficult as the previous days were starting to catch up with me. Returned to hospital early so the wife could go to an appointment. Found the boy sitting up holding court and looking tenfold better than the previous day. Fifteen hours sleep may have helped.

The wife said that although he looked better it had been a day of cruel disappointment. The doctors had said that his blood cultures were not showing anything and he looked much better. Since he wasn't neutropenic there was no need to be in hospital. And we could go home in the morning. A little later the doctor returned to say that they had grown something in the cultures and we weren't going anywhere for the next few days.

The bug is a "staph". But we don't know what sort yet. That will wait for Monday. He's on IV antibiotics and we hope it's not a bug in the line. Although we have cleared them before, when it happened in July he had to have an operation to remove the line and have it replaced with a femural line - which the boy hated and found upsetting.

Looked after the boy for a few hours. He seemed to be trying to make up for missed play the previous day. He was quite manic, wanting me to help him play with three toys at once and for all his toy animals to play along as well (I had to make them move and provide voices). I was quite worn out by the time the wife returned but pleased he was looking so much better.

Will look after him for the whole day while the wife has her day off. The nurses have said they will cover so I can have lunch but, on past performance, I'm not holding my breath.

Thursday, 18 January 2007

Love Potion No.9

Return to the hospital to see the boy and relieve the wife. He's no better and she's knackered. A night in hospital beckons.

Came to the local hospital after work. Was a difficult day at work. Computer screen a bit fuzzy from lack of sleep. Even copious amounts of coffee didn't help.

The boy's condition didn't seem to have changed that much from when I left to go to work. High temperature and heart rate only controlled for short periods by regular paracetamol. He still needs to have extra oxygen or his saturations fall too low. He looks weary and fed up. He's on an intravenous antibiotic and an oral antibiotic (on which more later).

But essentially the doctors don't have a clue what's wrong with him. Their diagnosis can be likened to a medical shrug of the shoulders. Doesn't seem to be a chest infection. No other obvious source of infection. Might be viral, in which case the antibiotics are not worth much - except as a prophylactic against secondary infections. A monitored wait and see policy.

And so to the oral antibiotic issue. When I was young there weren't many oral antibiotics - there seemed to be only two as I recall. A liquidy strawberry one and a milky banana one. You were rarely considered ill enough for the banana one and kept getting fobbed off with the strawberry one. But I digress. Now there are a range of liquids and tablets. As the boy has a G tube, the doctors always prescribe a liquid. But they forget or don't think to take into account that he has a jejunostomy inside the G tube. This means that the actual dimensions of each is quite small even though externally it looks like a quite significant tube. And most modern oral antibiotics are suspensions of enteric coated granules, not liquids. The granules act like silt, even when heavily diluted in water. And so can block the tube.

Despite our concern, the nurse brings us the oral antibiotic swearing blind that she's looked at it and it's a liquid. Mistrustfully I take it, dilute it and start to administer. Two mls go down before the tube blocks and it spurts back over my hand and the boy. Rub my hand to clean it off and there is the white powder of the granules. Grumpily get the nurse for another way to give him the antibiotic and a G tube introducer to try and unblock the tube. End up working on the tube as if its merely a smaller version of my kithen sink. Eventually, manage to clear most of it through a combination of the introducer and drawing back with a syringe. The boy is very patient as my face becomes as pink as his from the effort.

The nurse returns. She's found, at our suggestion, a tablet form which she's crushed and disolved in water. We ask if she's checked the packet to see if it talks about granules. She's sure it doesn't. Being suspicious we wait to see if there's sediment. Which of course there is - tablets have enteric granules too these days. So I try gingerly to administer it but to no avail. They are out of alternatives on the ward and we will have to ask the doctors and pharmacy in the morning.

Decide that he's too unstable for us both to be at home. The wife has dealt with him all day so I offer to do it. A sorry sandwich, a packet of crisps and bed.


All too predictably, the boy is in hospital.

When I got home from work, the wife said he'd had a good day and been very active. To me he looked wiped out and somewhat lethargic. Got him bathed and to bed early (with almost no fuss - not a good sign).

Took his temperature. Was up but not too bad. He went to sleep almost immediately. Took his temperature 45mins later. Sky high with high pulse but oxygen saturation ok. Called the hospital for his blood results (he'd had them taken earlier in the day by a Community Nurse). They were not great but ok. Gave him some paracetamol. This calmed him down but not us. By 1am his temperature was very high again and his pulse higher. Gave him more paracetamol. Temperature came down quite quickly.

But by 5am his temperature was rocketing again with his pulse. And he vomited. Decided we had to call the hospital and suggest to them that he should be admitted. They agreed. Called for an ambulance as his oxygen saturation was dropping. By the time they came he was on oxygen and ill enough not to be pleased to see the ambulance crew. He did cheer up when he saw the ambulance and happily stroked it. Took pains to tell the crew that it was a yellow ambulance and that there were also ambulance cars but they were not as nice as their ambulance. The ride made him retch a bit but not actually vomit.

Went to A&E. The usual relating of his history to three different nurses and a doctor. After an hour (pretty short by normal standards) he went for an X-ray and then up to the ward. Relayed his story a further two times to different nurses. Tried to get the room stocked for his needs but this was difficult as I couln't leave him for more than a few seconds at a time and the nurses had disappeared into handover. Unfortunately, the room suction pump wasn't properly assembled. Luckily had ours, so could use that until I had time to assemble theirs properly.

The wife came later with other supplies. Did handover with her and got the room stocked. Two hours after admission he still hadn't had any treatment for whatever he's got. Hopefully the doctors will decide this morning. Then had to leave to go home, shave and on to work. Terrific.

Wednesday, 17 January 2007

Nightless night

I hate nights. Bad things happen at night. This is when the boy gets most often ill and I am at my lowest ebb.

Last night was a classic. Couldn't sleep. The regular wheeze and puff of the oxygen machine disturbed my sleep. Lots of anxiety dreams. Only dozed from about 4.30am. First time for a while that he needed oxygen all night. Not clear why. He seems ok during the day. Maybe the chemo is having some effect.

This isn't helping my mood.

Tuesday, 16 January 2007


Coming home after work is often a strange experience. Not sure how things are going to be. How is the boy? And the wife?

Yesterday, the wife looked frazzled, despite my mother being there. The boy had been both active and intermittently stroppy. Being a typical three year old I guess. So I looked after him until bedtime. Was quite fun. He was keen to show me the painting he'd done for me and granny. But he wouldn't let me talk to granny. Always dragging me here and there. Or coughing to make sure I suction him. Granny always looks a bit put out that about this. Then we played the bed game - he takes me upstairs, tucks me in and turns the lights out. And says "na na" (night night) before shutting the door. A role reversal of his bedtime.

Was helpful that he was fun. Helped to dispel some of the blackness that I've been feeling for the past few days. Death feels more present than usual. And more inescapable.

Monday, 15 January 2007

History - 2007

The start of the year found us twenty months into the journey. The boy was just three years old. He has had three major operations on a tumour in his brain. He has had two different courses of chemotherapy and six weeks of radiotherapy. He has a trachy and a G tube.

The boy was recovering from the two operations at the end of 2006 and starting his third course of chemo. He has right-sided facial paralysis, no swallow and is very wobbly on his feet (the tumour has afftected his balance).

The boy had three cycles of chemo (three weeks on, one week off) until the end of March. He then had a brain scan. This showed that the operations had not been able to remove all the tumour as we had hoped.

The month of May finds us waiting for a second opinion about what options for treatment, if any, are open to him.

History - 2006

The boy was just two years old. He'd had surgery on the tumour; had a trachy and G tube insterted; had chemo (unsuccessful); and had radiotherapy.

He had a MRI at two years, one month old. The radiotherapy had some limited effect. But the tumour was still there. Not being on treatment meant his hair grew back. A shade lighter than before but still lots of it. It was a good time to be off work. We would all recover a bit and enjoy being together.

Not being prepared to accept that there was no more treatment for him, the wife asked for a second opinion when the boy was two and a quarter years old. She had to travel 200 miles to see the consultant. I had to stay with the boy, as he has to be left with someone trachy trained. The consultant suggested another chemo.

At age two and a half, he started the next chemo for three months. He was ill again on it and spent two months in hospital. And so, so did we. But at age two and three-quarters, the next MRI showed that it had done a little good. The tumour had shrunk very slightly. But just enough for the surgeon to say she was prepared to try again. But it would mean two operations, two months apart. The first operation was the "easy one", the second the "difficult one" - read much more risky to do and for the side-effects which might result.

At age two years, ten months he had the first operation. Four hours. Went well and part of the tumour was removed. He came through it well and was home after a week. A bit wobbly on his feet but otherwise fine.

Then they decided that since he'd recovered so well we should bring forward by a month the second operation. So, at two years eleven months he had the second operation. Six hours. Went well but outcome unclear. He did not come through it so well. Coming so soon after the first one he was not as strong going in. His recovery was slower. And he had complications. The right side of his face is paralysed. That element of his swallow that had recovered after the initial surgery was wiped out. But he was home just before the year end.

History - 2005

At almost twelve months old, the boy was much like other boys. He was crawling. He was starting to walk around holding on to things. But he did wake up crying in the night. Every night. At almost the same time. And couldn't be soothed to sleep without paracetamol or ibuprofen.

At thirteen months, he was taking a few exploratory steps. His parents were thrilled. But he had a bit of a tilt of his head. The doctor said it was an ear infection and not to worry.

At fourteen months, he had stopped taking exploratory steps. He still had the head tilt. Further trips to the doctors had confirmed the ear infection. It will pass they said.

At fourteen and a half months he had the occasional unexplained projectile vomit to go with the head tilt. Then came the slight droop in the corner of his mouth. Worried and tired from the constant waking in the night, I asked the wife to take him to the doctors again. This can't be right at his age I said. I thought maybe he'd had a small bleed in the brain. I thought I was being over-dramatic. I was wrong.

That Monday the wife went to the doctors again. She wouldn't return home for two months. The doctor finally referred the boy to local hospital. They kept him in overnight for observation. The wife stayed with the boy. I visited the next lunchtime from work to bring tea bags for the wife. I would not return to work for seven weeks.

The boy had just had a MRI (brain scan). The doctors came with the result. They looked upset. Taking us somewhere quiet they said that there was something on the scan. They would not say what but were referring us to a specialist hospital. We transferred that day.

The specialist hospital said it was a brain tumour. A large one. And they would operate the next day. We were left in shock and fear.

The operation took all day. They removed several large fluid-filled cysts from the brain and most of a tumour from near the brain stem. Tests on the tumour showed it was a Grade 3 Ependymoma.

The boy was very ill post-operatively. He had post-fossa syndrome. He was incosolable. Unbeknown to us, he had lost his swallow. Vomit and saliva got into his lungs. Within a few days he had pneumonia. Badly.

He was taken to intensive care. He was put on a ventilator to help his breathing as his lungs were in such bad shape. He was sedated on morphine. We stayed at his bedside for nearly a week. Just hoping he would pull through.

After a week he was weak but off the ventilator. He was taken back to the ward. After a couple of weeks they decided he was well enough to start chemo to try to get him to three years old, when he could have radiotherapy. But without all the tumour removed his prospects were not good. And as chemo would make him vomit, he would need a trachy to protect his airway and a G tube (for food) inserted in his tummy. We did not understand what having a trachy would mean. He can't be left on his own; ever.

He had the trachy and G tube inserted in a single operation - after some heavy pressure from his parents to avoid two procedures. He started the chemo at sixteen months. He was still poorly. Couldn't sit up unaided. Crawling or walking were out of the question. The chemo made him very ill and some of it affected his trachea causing bleeding.

At seventeen months they decided he should be transferred back to the local hospital. A disaster. They were used to dealing with children on chemo but under-estimated what was involved for chemo and a trachy. His needs were so high that we had to do all cares and be with him at night to deal with suctioning and vomiting. We got very little sleep. Even sharing the nights gave us almost no sleep. And nursing support was variable at best. Things came to a head when he had a major bleed from his trachy which I couldn't manage and there was no nursing support (they were all with other patients). I truely thought he was going to die. We were so concerned that they agreed he be transferred back to the specialist hospital.

We stayed at the specialist hospital for a further month while the local hospital tried to sort itself out. Eventually, after pressure from the specialist hospital, they were ready. And back we went to the local hospital.

The boy's nineteenth and twentieth months were spent in a mixture of the local hospital and specialist hospital (specialist hospital for the chemo and local hospital for after care). He was not well. He had pneumonia several times, even with the trachy. I returned to work. They had been very good but I couldn't stay off indefinitely. And there were bills to pay.

At twenty months the boys had another MRI. Bad news. The tumour was growing despite the chemo. Surgery was not an option because of the location. After reviewing the options we decided that even though he was rather young we would have to go for radiotherapy. He was able to crawl by now, when not connected to an oxygen tube. We stopped the chemo.

At twenty two months he started radiotherapy. Thirty sessions done one a day, five days a week for six weeks. To add extra spice this involved a daily ambulance transfer between hospitals. Luckily, the boy thought this was a great game. He loves ambulances and ambulance crews. They used the same crew for the trips and he loved them.

He sailed through radiotherapy without any ill effects and at twenty three months was allowed home. Also, there was no other treatment offered as he'd had everything in their arsenal. The tumour was still there so we just had to wait and hope. I decided to take three months off work (unpaid) as we didn't know how long the boy had.

This is how it feels

This is what it's like to have a child with cancer. A brain tumour in fact. An ependymoma to be precise.