Colin’s story

“Can we go somewhere quiet?” A year of living with childhood cancer. A father’s tale.

A year of living with childhood cancer

This diary records a year of being a parent of a child with cancer. It started as a way for me to try to make sense of the fears for the major brain operations that were the boy’s best chance of a longer life. It followed the operations, chemotherapy and the highs and lows of everyday life when your child has cancer. In the end, despite everything, they were ultimately unsuccessful and so ends with the boy’s death and funeral. We will have to find a way of carrying on without him.

In the beginning

Your child has cancer. Words no parent expects to hear. But I did.

The boy was diagnosed in March 2005 at age 15 months with a brain tumour – an ependymoma to be precise. Apparently, he only had weeks left to live. Now, eighteen months later, he has had brain surgery, a feeding tube permanently put in place in his stomach and atrachaeostomy. He’s been through two lots of chemotherapy and radiotherapy.

But the tumour is still there. So, faced with the choice of not giving him any treatment and letting the tumour take its course or trying to get rid of the tumour through two lots of dangerous brain surgery, the wife and I have decided to accept the risks and go for surgery.

Ambulances

The boy. He loves ambulances – just as well, since he is so often in one. Children are so adaptable. It doesn’t matter how ill he is, he is always excited to see a paramedic and the flashy lights of their vehicle.

Hints for parents of children with cancer

These are based on my experience in UK hospitals – yours may be quite different:

• Don’t expect anyone to use your name, you are now “Dad” or “Mum” to all medical staff. They will remember your child’s name but rarely yours. This is all about the child now.
• Don’t overlook the nurses. They can be a great source of advice and support.
• Don’t ask for statistics about your child’s chances. It doesn’t really help.
• Don’t let visitors bring flowers. Most wards won’t allow them because of the infection risk.
• Don’t cry in front of your child. Go somewhere else to do it – we all do. There’s usually a room you can go to (parents room or coffee point).
• Don’t let hospital be an abnormal part of your child’s life. You’re going to spend some time in hospital, so make it seem normal for the child. Bring toys or things from home. We have a few set toys that go everywhere, even in emergency ambulances.
• Do check when doctors are prescribing medicines and courses of treatment that they have considered the side effects relevant for your child (for example, oral medicines sometimes come in suspension solutions which can block a feeding tube).
• Do press to stay with your child, especially when they are first admitted or are very ill. Most hospitals will try to find somewhere for you to sleep on the ward. It won’t be comfortable but at least you’ll be nearby. But if your child is in intensive care, you will have to leave them. They are in good hands.
• Do use nurses’ names. Most hate to be called “nurse”.
• Do find out the side effects of chemotherapy or other treatment. You will need to be prepared for them and to help your child be prepared.
• Do ask doctors to explain terms you don’t understand. Most will slip into jargon without realising it.
• Do find out about your local hospice. They can be great places to stay for a break when your child is out of hospital. They’re not only for children at the end of their lives.

Keeping healthy

A big challenge with a child on chemo is keeping them healthy.

Chemo hammers the immune system and so even when the child is at home it’s a struggle to keep them well. It means an odd sort of life where you either see people outside in the park or endlessly check the health of visitors. This particularly applies to other children, who are so prone to coughs and sniffles at this time of year. Any of these minor illnesses, part of a healthy child’s growing up, can lead to a chest infection and a couple of weeks in hospital for the boy.

As we are waiting for the operation we are desparate not to have to cancel it because of illness. So, it was with some trepidation that we heard that a child he had seen had come down with a nasty cold. And this was after cancelling two other social visits because someone was ill. And, during yesterday we got increasingly worried that the boy had got it. He looked peaky, sounded wheezy and needed oxygen support during his nap. We put him to bed bracing ourselves for the time in the early morning that we would have to call an emergency ambulance. It’s always early morning – usually between 2am and 3am – for some reason which I assume is related to body cycles.

Under pressure

As if waiting for the operation next week and the worry about the risks weren’t enough, the operation’s suddenly in doubt.

Out of the blue a week after fixing the date for the operation, the Big National Hospital have decided that he needs an MRI beforehand in case there’s been any change in the tumour. This sent our pulses racing as this is exactly what we have been worrying about as we watch his hair grow back. And another thing, they said, unfortunately there aren’t any free slots and you’ll be on a cancellation list. No MRI, no operation we inwardly screamed.

It’s just so tiring dealing with work, the boy, the wife and my own worries about what will happen to him and all our futures. Me and the wife look pretty haggard. But you just have to keep taking it. What else are you going to do?

Here comes your man

Some good news for a change. The Big National Hospital have delivered for the boy. We now have a slot for the MRI next week, ahead of the operation. The wife and I are worn out from the worry.

Had a really nice day with the boy today. In the morning he supervised me doing the washing up. Telling me imperiously which order to wash things and where to put them when washed. And then he tottered off to get the sheets from his cot to put in the washing machine. That they were not dirty was of no matter to him.

Then he decided that we needed more milk and put on his prized wellies. The ones with blue stars on them and put his coat on and ordered me to get ready. This would have been more impressive if he had been able to point to the front door. He couldn’t because his coat was on upside down and he was struggling like a drunk at closing time with incomprehension at what was going wrong.

His confident walking down the road and racing from drain cover to drain cover left me a bit moist eyed. Luckily, he counter-balanced this by throwing an almighty strop in a shop, complete with throwing himself full length on the floor and sobbing inconsolably as some mothers looked on in a mixture of sympathy, indifference and distain.

I don’t need the pressure Ron

Preparation for the operation started today. The boy had a MRI. A process not without risk. He has a trachy with metal in it. So, the trachy has to be changed for one without metal in it before the scan starts and then changed back to his normal trachy afterwards. This can cause some trauma to his trachy site – really an unhealed hole in his neck. Our nervousness is compounded by our experience last time when something happened during one of the changes to make his neck bleed. A horrible sight to go into the recovery room to find him moaning with blood and secretions frothing from his trachy.

This time it seems to have gone ok. But now we have the worry of the night as anaesthetic depresses your breathing afterwards. Not a good thing as this means he needs oxygen and puts stress on his respiration. This makes him more likely to have an infection take hold.

Let’s hope he has a good night and the scan result is ok. Scans are a bit like Russian roulette where they add a bullet each time as the more he has the more likely there is to be a bad result.

At least a trip to hospital means that there were ambulances to stroke. Always a winner in the boy’s book.

Mirror Mirror

People do talk a lot of nonsense to you when you’re the parent of a life-limited child. Great euphemism “life-limited”. They mean “odds on terminal”; they just don’t want to say it. And it’s amazing the range of euphemisms that come up time and time again:

What they say: “I do admire what you do for the boy.”
What they mean: “I’m glad I don’t have to put a piece of plastic tubing in an open wound in his throat.”

What they say: “You are marvellous parents.”
What they mean: “You do have to put up with a lot of crap don’t you.”

What they say: “Amazing how you’re always cheerful.”
What they mean: “Please don’t cry in front of me. I wouldn’t know what to do.”

What they say: “I couldn’t do what you do.”
What they mean: “Rather you than me.”

Parents of children with cancer are no different to the next person. They’re just trying to deal the best they can with the hand they’ve been dealt. They’re not supermen and women. After all, what are you supposed to do if your child has cancer? Walk away? So you keep taking it. And when you think there’s nothing else to give, the situation demands a little more. And then some more. Logically, there must be an end, either to the situation or what you can take. Who knows which comes first.

Isolation

The boy has had his operation. Only two hours, though he was in theatre for five hours. The surgeon thinks it was successful and the tumour from the fourth ventricle has been removed. No side effects so far. He can move his arms and legs. But the next 48 hours are critical as any side effects become apparent. Next operation in January all being well.

Tomorrow, all being well, he will have a MRI to see whether they got all the tumour that they wanted. This has to be done within 48 hours otherwise the swelling will obscure the true position.

Black night

I’d forgotten what fun a night in hospital is. The boy had a mixed night. Much as predicted.

Post-op is always a scary sight. Tubes everywhere. An arterial line in his hand. Catheter to monitor his wee. Two canulas in his foot. Heart monitor pads at the shoulders and chest. SATS monitor on the finger. Oxygen tube attached to the trachy. The upsetting thing is that they say “you can give him a cuddle” but the lines are such that there’s no way you can do it. And with neurosurgery you want to leave them lying down anyway. So you ineffectually stroke their hand or just sit and watch them.

He did have a high temperature overnight and vomitted regularly until the early hours. But mostly the morphine helped him doze through it all. He is still asleep, cuddling little panda (who has acquired a head bandage as well). His face is rather puffy after the operation.

Good together

Good news from the scan. Surgery sucessful in removing part of tumour. But the surgeon reminds us that the next operation in January is more risky and uncertain to have such a good outcome.

The boy had a bad night. Only slept for a few hours. Demanded Mummy come in to bed with him. This doesn’t bode well for tonight when I will be with him. He spent the morning complaining if I tried to do anything for him. Only Mummy will do.

His constipation has cleared [non-parents may wish to skip the next bit] he had a suppository last night. Within minutes there was an almighty liquid rumbling from his nappy. Had a quick peek. Wished I hadn’t. Four days backlog in one go. When I tried to clean it up the nappy could not contain it and it ran down my hands and arms. Meanwhile Mummy was saying well done. I was not so charitable. Which got me a bit of a telling off. Further squirty noises over the next couple of hours meant lots of time clearing up the mess.

World in motion

Approaching op makes life tense.

Sweet moment yesterday. The boy tried to use the mobile phone. He wanted to speak to the pandas in America. The wife pretended to speak to chi chi’s granny to find out how they were. The boy was so excited to be able to say hello. He told them that he wanted to give them and auntie a hug when they returned. And to make them a cup of tea. The wife was able to check that they were having enough bamboo to eat. But the tea in America was not very good and they would be home soon. He was happy to say goodbye.

Less good was mounting tension meant the wife and I had a falling out last night. It was over something trivial. But it spoilt the evening, ruined the possibility of a peaceful night’s sleep and left us miserable. The hidden part of having a sick child is the strain it puts on our relationship.

(Un)comfortably numb

Operation day is here again. He’s gone to theatre again. And the wife and I are sitting in a cafe making brittle conversation again. We’re in for a long wait.

The wife said she found coming in to the Big National Hospital yesterday harder than last time. The surgeon went through the risks of the operation and the side effects in her clear direct manner. They are so much worse than the last operation that the wife found it hard to take. She had a cry before returning to the boy. Perhaps I should have come with her rather than finishing up at work. But we agreed to save up what remains of my leave. And its not as if we haven’t been told all this several times before. Just the proximity is different.

A better life

It went better than I expected. So said the surgeon. But we won’t know for sure until he has his brain scan. Side effects unclear but pronounced weakness in right side of his face. We are just so relieved that he has come through this relatively intact to care about anything else at the moment.

We were shocked to be met by the surgeon. As the operation was on the shorter side, we feared she hadn’t been able to do what she wanted and get all the tumour. But since she was prepared to discuss it in the doorway we figured it wasn’t truely disastrous news. She said that it had gone better than she expected. She thought that she may have got all the tumour. But the scan tomorrow or Friday will make things clearer. She didn’t cut any nerves that she knew about. But she did have to “tug really quite hard on one of the facial nerves. It stretched but didn’t snap”. I was left decidedly queasy at what was, for me, too much information. She said that the stretching had caused some asymmetry to the right side of his face. Might be permanent, might not. Would take three to six months to be clear.

The wife and I are still in shock from the operation. Such acute tension. Worrying about how we would deal with a range of downsides. It will take a while to take in what we know about how it went and what his side effects really are. But as of now we are better off than we thought we’d be. And for that we give thanks.

Finding the river

Had a visit from the surgeon in the evening. She says that his scan looks good. There is something on the scan but she thinks it may be scarring from the operation last month. We have to hope so. We will have to wait for his next three month scan to know for sure. But so far so good. For now he is stable and for that we are grateful.

We are very grateful for the treatment the boy has received. The neurosurgeon is dedicated to a point that, if the boy wasn’t benefitting from it, I’d be tempted to call unhealthy. She came in on what must have been her weekend off to review his scan and give us the news, rather than waiting for Monday.

It is hard to look at the railway map of scars across the back of his head without some feeling of guilt for what we have put him through. Whatever the logical reasons might be. It is harder to remain logical and positive when we are so tired. We therefore decided that as he was relatively stable and we are both exhausted that one of us would stay with him and the other would go home. Normally, I’d insist it was the wife but I gratefully accepted her offer for it to be me. The cumulative effect of two operations takes its toll on us all.

Back home

He had a good morning, racing another boy round the ward, each in little cars. Good exercise. He was very good with the doctors (even gave the consultant a hug on Friday – she went quite pink) allowing them to check his chest. They pronounced him fit enough to go home. But we were in no rush, waiting for the wife to arrive. And it took ages to get his medicines delivered. So much stuff to pack. Got home mid-afternoon.

He was clearly tired by the time he got home. Not enough sleep. And too much excitement. He likes hospitals so much so that there was a moment when he said he wanted to stay.

40 winks

Tired. Tired. Tired. Have I said this before? A friend said “You don’t look as bad as I thought”. Another said “Mate! You look as though you’ve been punched in both eyes.”. Umm… Thanks.

The wife tried to write an online prescription to get us through to New Year. Email failed. Cue some immoderate language and banging of fists on table. The boy wonderfully mimicked Mummy by banging his fists on his legs and pouting, to my amusement, though thankfully without the accompanying language.

Chemical beats

The boy starts on chemo again today.

He went to see the oncologist yesterday for an assessment ahead of re-starting chemo. He said it was a good trip. He saw a doctor but she did not have a blue hat (i.e. not in theatre gown). But he did see a little ambulance (ambulance car) and a big ambulance. And he went there in a blue car.

Chemo has to be done. But that doesn’t make it any more welcome. He will lose his hair. He will start to look waxy. And his risk of chest infections will rise over the next two weeks. Depressing prospect.

His latest game, when I get home, is to make me go to bed. He makes sure I am tucked in. Then he says “na na” (night night), waves and leaves the room. Then he will come back to check on me, putting me back in bed if I have got up. Very sweet.

Chemicrazy

Whilst the boy started back on chemo yesterday, today was my first time to administer it. Oddly depressing experience.

Felt rather flat this morning. Ended a conversation with a friend rather abruptly. Not in a mood to engage.

Realised somewhat belatedly that it was chemo restarting. There’s nothing like the ritual of putting on gloves, putting a needle on the syringe, watching the oily liquid swirl about in an evil manner as you draw it up. Don’t forget to add water to the chemo phial to make sure he gets all of it. Give a big flush to avoid damage to the G tube. Throw it all away in the cytotoxic box without getting any on your skin. The irony of having to avoid getting it on my skin while he ingests it is never lost on me.

Found myself ruffling his hair more than usual. All too conscious that it will soon disappear. He’s still recovering from the operation and only just starting to get back to his more normal cheerful self. So to make him ill again seems unfair. We may have been here before but that only helps to a limited extent.

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.

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 otherwise 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.

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.

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.

Leave me with the boy

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

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

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

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

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.

Dead souls

Got the scan result. Bad news.

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

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

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 anomaly was scarring, not tumour. Ependymomas may have a high recurrence 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 news is good news

I guess there’s no good way to get bad news. But there’s a curious ritualistic quality to it that gets repeated over and over again, irrespective of the hospital.

1. The consultant comes in with serious face asking whether we can “go somewhere quiet”. These have become the most frightening words I can hear.
2. We go with the consultant and a nurse feeling sick and very small, like children on the first day at a new school.
3. We go to a small room, bare except for a few chairs, a few cheap prints on the wall and an ominous box of tissues.
4. We sit on the chairs furthest from the door. Never sure whether this is so they can exit gracefully or to stop us running, screaming from the room.
5. The consultants always start the same way “I’m sorry to have to give you this news but…”. Then you get the news. They pause, then give you the news again in a different way in case you blocked it out the first time.
6. They offer tissues and ask if you have any questions. You don’t really have any since you are reeling but ask a few anyway, since they’ve asked. You won’t remember the answers later.
7. They ask if “you’d like a few moments alone” and withdraw.
8. The next half an hour passes in a blur. In our case, the wife talks non-stop in-between the tears. I struggle to make sense of what she’s saying but try to mumble a few things appropriately.
9. Then I go back to the boy and the wife goes to ring her family.
10. Finally, the nurses leave us all alone for a few hours. If you don’t refer to the news none of the nurses will.

Why not smile?

Came home from work yesterday to find the boy watching TV with Mummy. He always has a cushion on his lap – like Mummy. He wanted me to sit and watch with him. He likes Mummy on one side and me on the other. Then he held both of our hands and gave us each a kiss.

Blue Monday

The boy is not very keen on the slow music I play. He likes the faster stuff the wife plays. But he will tolerate New Order’s “Blue Monday”. He stands up and goes up and down on his tiptoes (he doesn’t quite have the balance to jump) and he nods his head deeply. He doesn’t like to be watched, so I have to join in.

Sunday boy

Visit from auntie M and Oma. The boy was rather uncertain about Oma but remembered auntie M’s car – up and down he said. A sports car with a retractable roof. He was very happy to make it go up and down until auntie started to get worried about the battery.

King of the road

It’s so hard to watch him learning new things. To see him so excited to demonstrate them. And at the same time know that his all-too-short life is in its final chapters. Is all a bit unreal, when he is happy and healthy, as now. But at least he’s not of an age where we have to explain it to him – yet.

Having followed his usual pattern of denying any interest in learning letters or numbers, then being excited when he could a couple and the rest following in short order, he is now at the stage of wanting to demonstrate or use them all the time.

Went out and ended up making painfully slow progress, since he wanted to stop and point out the house numbers. Then at the end of each road he wanted to point out some of the letters on the road signs. He is pointing out “O” squeezing his cheek (sign for orange) and “N” pointing to the top of his head (his sign for Nena and the Neurons – a TV programme he loves).

Have now told auntie the news. Or rather the wife did. Ended up being one of the wife’s stream of consciousness monologues about the boy, the options and preparations for the end. The wife only realised what she was doing when she heard auntie sobbing at the other end of the phone. The wife apologised and auntie seems ok but I wasn’t impressed. Still haven’t told granny. Not looking forward to that since she has always refused to entertain any notion that he won’t survive.

Love story

Strange how even with DVDs and computers, children like being told stories for their imagination.

I read him bedtime stories from books. But the wife goes one better. She tells him stories.

The wife and the boy sit on a rug in our bedroom. This is a magic carpet on which they fly off to see characters he knows from the television or books. The wife will tell a story about the character while he sits staring at her. Sometimes he suggests the character and what’s going on; sometimes he wants her to tell him. When the story is finished they wave goodbye and fly off to meet another. He loves this and will sit enraptured until the wife is quite hoarse.

Trainspotting

Quiet weekend but the boy remembered that he’d been promised a trip on a train. So off we went.

Last weekend I said I would take him on a train. I thought he’d need to go to hospital for a check-up. But they’ve deferred it, even though it isn’t clear that he’s kicked his infection despite antibiotics.

So, we all went off on the train. The boy loved it. Waiting on the platform for trains to pass – “not mine” he says. Waiting for trains on the other platform – “not mine” he says. Waiting for the train on his platform and waving to the driver as it pulls in – “come on” he says.

Puppet on a string

Not a conversation anyone should have about their child. How long do you want CPR to be performed? Do you want them to be put on a ventilator? Do you want them to die at home, at the hospice or in hospital?

We had the meeting to plan for dealing with illness when he’s well, when he’s in decline and at the end. There were so many people there they had to use a seminar room:

• Oncology consultant
• Palliative care consultant
• Paediatric consultant
• Social services
• Community nurse
• Clinical Nurse Specialist (oncology)
• Clinical Nurse Specialist (family support)
• Hospice outreach
• Home nursing agency
• The parents

Good of them all to give up so much time for a little boy. But so hard to endure. Having to go through his history yet again. Having to discuss symptoms that will show the tumour is progressing. Having to discuss what treatment it is and is not worth having at the end. Emotionally draining. And then back to work.

Someone said how brave we were for having the meeting. I get unreasonably annoyed at that type of statement. I don’t feel brave nor do I think we are being brave. I feel we have no option and sometimes just a bit patronised.

Got home to an excited boy. The hospice had got him a signed photograph from Mr Tumble (children’s TV character). He was thrilled, wanting to show the photo round the house. Made the emotion from the meeting that bit harder to handle.

The lion sleeps tonight

There are times when it seems that we are anticipating the boy’s end too much.

He is still not recovered from his chest infection and needs oxygen overnight. But despite this, the wife was very keen for Oma and auntie m to come and see the boy. She wanted them to see him while he is as he is now and not when he’s in decline. She rather pressurised them into making the visit.

I gave them some time to talk by taking the boy out shopping and then to auntie’s before returning home. The boy looked very tired and wanted to cling to Mummy on returning. He did gain confidence after a while but was not quite on top form. Even with the car with the roof that goes up and down. Was worn out after they left and sat quietly watching TV. His temperature went up before bedtime. Paracetamol controlled it but he needed a fair bit of oxygen overnight.

Been fretting about whether we should have gone for more chemo for the boy to extend his life. Had been suggested by another parent in a similar position. Matched my own worries. But, the trachy is always the worry from chest infections. More than likely this chest infection would have put him in hospital already. But without chemo we end up with less time overall. Just never ever clear cut ‘right’ answers.

Guilty of love

“Dada. No seven. Six. No more”

As if the guilt from working wasn’t bad enough. Had a meeting yesterday which finished late. Was over an hour late home. Greeted by the boy wagging his finger at me. Looking solemn and saying I was home at 7pm. Should be 6pm. And then having it repeated at 15 minute intervals until he went to bed.

Doesn’t help that I’ve been feeling increasingly frustrated by work. Wanted to be working less hours than I am by now. Wanted some time off. But the project has stretched on and not yet reached a conclusion. The ideal of moving to more part-time working seems to stretch endlessly, tantalisingly out of reach. Not helped by having to work late again tomorrow. And I’m going to miss the boy’s Make-A-Wish trip to see Mr Tumble on Friday.

Smile

There are days when you can pretend that the boy’s going to carry on. And then there are days when you have no option but face it (sic).

The paralysis of the boy’s face has become more and more pronounced in the last couple of weeks. Acutely so when he smiles. So much so that I decided to broach it with the wife. She admitted she had been thinking the same. She was very upset, both at the time and then late at night (her usual pattern).

External evidence of the tumour – growth along the optic nerve perhaps – makes me think again about the closeness of his end. Renewed feelings of guilt about whether we should be doing more and of frustrated helplessness.

Why does my heart feel so bad?

I don’t know how close the boy is to the end. But Sunday felt like we took a significant step in that direction.

He had been fine in the morning and had gone to the hospital for his antibiotic. When he got back he didn’t look too good and so we got him to sit on the sofa to watch DVDs. He was very lethargic but eventually perked up after a couple of hours and ibuprofen. But when he got off the sofa he could not stand up unaided.

His balance has never been brilliant but he has managed. But this time he needed to hold on to things to stop falling over. He did recover a bit later in the day but his balance is definitely worse than it was on Saturday. The pressure from the tumour must be building up.

The wife and I are very upset. Made coming home yesterday something to dread. Fearful of what will have changed during the day. He doesn’t look the boy he was two months ago. Makes you so, so pessimistic of where we will be by the end of September. But with all our worries, the boy remains cheerful and happy to play when I got home. I told him l loved him last night. He screwed his face up seriously and said “I like you too Dada.” Makes me want to cry.

Sunny afternoon

Sunday is my lie in day. Struggled to sleep in. Tired but anxiety dreams dominated.

When I got up, I had to read the paper to stop thinking about the boy and the end. Too upsetting if I didn’t.

The boy went to the market. He seemed pleased with his purchases. Wouldn’t rest when he got back. Keen to do more cooking. To remain active. It was a sunny day, so we spent some more time in the garden in the late afternoon. One of us holding his hand as he tottered round the garden doing watering. Have to make sure his watering can is not too heavy for him.

He is the most cheerful of the three of us. His lack of use of his left hand is more pronounced today. Everything with his right hand. When he went to bed, we have had to restrict his routine as he can’t manage hide and seek any more. He was very tired and after a book was happy to have a nebuliser to go to sleep. But did struggle upright to give me a kiss and a hug when I left the room. And blew me kisses.

What else is there?

An old friend of the wife came over in the morning. Brought the boy a bubble gun. He was thrilled. Happy to sit on the back step and pull the trigger to spray bubbles at me. Lots of laughter. But he was worn out when the friend left.

Needed some quiet time but auntie m and oma came over. The boy watched TV for a while and then I carried him down the road so he could look at house numbers. We then played upstairs on my bed. He is more and more unstable. Not always able to remain sitting upright. Sometimes falling over as he can’t use his left side to support him. More deterioration since last weekend.

He did stay awake until bedtime, despite how tired he was. Earnestly told me he was happy, as Mummy doesn’t like it when he is sad. Read him two stories at bedtime (one old one, another a new one) even though he was swaying with tiredness and gave him a nebuliser. Couldn’t find it in my heart to refuse his requests.

Get your snack on

After the boy’s lie in, thankfully a better day.

The boy was quiet in the morning, physically and vocally. But a visitor came from the organisation that helps get him to hospital. He was pleased and happy to do a jigsaw with her. Then we went in the garden to show her his bubble machine.

After she left, we finished off making the trifle from yesterday. Just in time before auntie came in her lunch hour. So, the boy made her try it. She said it was nice. After auntie left it was back to cooking. This time poached plums in crème fraiche and chocolate. Which he made twice. With no room left in the fridge we had to give it to the neighbours. But without telling him, or he’d have been upset.

By late afternoon he was tired and did relent and watch TV for a good while. But once over, it was back to cooking. And when that was finished he was looking through his recipes to decide what to make next. Assessing what ingredients were required and whether we had them in the house. By this time he was much more vocal and ordered me out of the house to get the missing ingredients for cooking tomorrow. By the time I returned it was too late to cook anything, so after considering the matter, he decided to cook “not real” (pretend) before going to bed.

Kiss

Horrible day. The boy is getting weaker. And for the first time since last December’s operation was not cheerful.

My lie in today but it is a mixed blessing, as you worry what will have changed overnight. The boy had another early start which is not good. His balance sitting down is now very poor and he easily over-balances to go sprawling. He still wants to cook but is no longer really up to it. He was not really cheerful at all today. He looked permanently worn out and everything is an effort. We did go out briefly to the shops to get ingredients and so he could watch buses.

It is so, so hard watching his decline. Tomorrow should be his first day at nursery but there is no chance of him going at present. Or ever? I don’t know what to do. I veer between anger and irritation and getting upset. He blew Mummy a kiss while I was drying him after his bath and I nearly lost it completely.

Watching a child die is so much harder than watching a parent die. The latter is almost an ok part of life’s cycle. With a child it is so unfair. A life hardly lived. He enjoyed his life so much, despite all he had been through. And now it is all being cruelly taken away piece by piece.

How low

I don’t know how far we are now from the end but it can’t be far. It is so much worse a process than even my worst thoughts.

It is only a month since his decline showed itself. But in that time he has stopped walking, stopped being able to sit up, stopped being able to use his left arm, stopped being able to support his head and now is losing the last control of his right arm. It is incredibly painful to watch. As a parent you want to be able to help. And we are helpless. Impotent rage sweeps over me. But the boy is accepting of all this. He doesn’t complain. He never says he’s in pain – not yet anyway. He just tries to get on with his life.

For him, things go on as normal. Just what is normal slips away each day. He still wants to paint and cook but it is increasingly beyond him. His routines on waking and bedtime continue as they always were. Just there’s less he can do and more we have to do.

In high wind one of our windows broke. Seemed like the final straw for me and the wife. She laughed hysterically and then cried. The boy put out his arm to comfort her by giving her a hug. How does he do it?

Miss you nights

• I miss the boy running unsteadily to the door when I come home.
• I miss him pulling out the wash basket for my work clothes.
• I miss a hug.
• I miss his lop-sided smile.
• I miss the chatter.
• Most of all, I miss him saying “Dada”.

But there are still flashes of him coming out, like when he shakes his head when I say it’s time for bath and when he wags an accusing finger at Mummy when she gets ready to have a bath with him.

Second guessing

The boy’s sleeping is increasingly erratic and his waking hours less active. And then he went blue.

The boy has had an odd sleeping pattern for the past few nights where he sleeps for five hours, is awake for six and then sleeps for a further five. Means foreshortened days. Today was a more limited day than previously. He was awake for only three hours doing a bit of cooking with his home school before falling asleep for a couple of hours in front of the TV.

We woke him for his bath. He was in the bath when the night nurse arrived. I was letting her in when the wife called. His fingers and lips had gone blue. I yanked him out of the bath and we got him connected to an oxygen cylinder while I dried him off. He still didn’t look good, so once dried we got him in bed and on high flow oxygen. He still wasn’t looking good, still blue at the extremities, so we called an ambulance. We realised that the problem was that he wasn’t breathing regularly enough. When I rubbed his chest and told him to breathe, he eventually did and the colour returned.

The ambulance crew came. But we soon established that there was nothing they could do other than take him to hospital. We said no (we have hospital agreement to that, so they didn’t insist). We rang symptom care but there was nothing they could suggest except medicine to pacify him as it was the tumour effect that was slowing his breathing. He was breathing so slowly (only 6-7 per minute) that the wife and I were fighting back tears and saying we loved him. We both thought we were going to lose him there and then. We called auntie round to give him a kiss and one of her pandas stayed with him when she went.

After an agonising hour or so things sort of stabilised. His breathing was slow but he didn’t need excessive amounts of oxygen to keep him stable. We gave him more morphine as his arm was waving a bit. The nurse encouraged us to eat. We did unwillingly but went back to him later. He was stable but in a half-waking half-sleep state. We stroked his hair and tried to ensure he was comfortable. We got a couple of restless hours sleep.

I’m so afraid of what tomorrow brings.

Baby, 1 4o7e 1ou

It is so, so quiet in the house. No machines humming and whirring. Not needed any more. The boy died at 2.13am BST. He was peaceful in his own bed, Mama and Dada with him. The struggle is over. He isn’t suffering any more.

These last few days have not been kind to him. This cruel disease had robbed him of all the things that he could do. All the advances he had made over the spring and summer taken away one by one. He still wanted to say goodbye to visitors, demanding to be carried to the door, even when he could barely manage a wave. But he was caught between what the tumour was doing to his body and what the medicines were doing him. There was nowhere left to go. He was a spectator on his own life, watching others do things for him that he used to do himself.

In the evening, he started to require increasing amounts of oxygen and his breathing not only decreasing in rate but also intensity. The wife got in bed with him to encourage him to breathe and massage his chest. She talked to him about needing to breathe in order to help auntie run a race. For a while it worked but after a few hours even this and more and more oxygen was not helping. So, we decided to turn the monitor and the pumps off and to stop urging him to breathe. I held his hand and the wife discussed things he liked. She went through two of his favourite recipes, the ingredients, preparation and cooking times. At the very end of the second recipe he was gone.

After a while, I dressed him in his favourite clothes and made him look presentable. Little panda with him, he looked for all the world as if he was asleep about to wake from a nap. In my sleep deprived state I kept having the illusion that could see his chest rise and fall a bit. But it isn’t.

We are trying not to remember him as he was in the last few weeks but earlier. The ever-cheerful, inquisitive, sociable little boy who was full of cuddles. When the wife accused him of beastliness he always said “No. I’m a nice boy”. He was right. He was a lovely, happy boy and he leaves a massive hole in our lives. We will miss you little boy.