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.

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 anti-biotics.

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.

Monday Monday

First big meeting with medical people coming up on Monday. The first time to have a meeting based on the "he's going to die" premise, rather than "can we cure him".

We get what looks like being formal handover from the oncologist to the palliative care consultant. The meeting should be those two, the local hospital, the community nurses, our local doctors and the hospice. Have to decide what appointments he should continue to have and what we wish to drop, whether if he's ill we still want him to come to hospital or try to treat him at home (higher risk), what medication we are prepared for him to have when he declines and where we plan to spend his end (home or hospice). Can't wait.

Also, finally got round to telling my boss what's going on. Never easy discussing non-work things. He does that uncomfortable not meeting my eyes thing. But what can you say in those circumstances?

Meanwhile, the boy's still trying to get over his line infection. But he's otherwise not too bad and happily meeting more people now he has a modicum of immunity.

Father and son

Fathers' Day.

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

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

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

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

It's not unusual

Potties, trains and antibiotics.

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

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

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

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

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

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

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

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

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

I see a different you

Having decided that we are not going to go ahead with further treatment for the boy, I finally got round to writing to the Big National Hospital to tell them. Been putting it off for some days. Didn't want to do it. A sense of finality about our decision in telling the hospital. Hard to write the email - one of the hardest. Hid behind clinical language. Still feel guilty about not going with further treatment, despite the decision. And rather empty. Everything will now move from the oncology team to the palliative care team.

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.

Shopper's Paradise

Yesterday's talk about palliative care and whether to bother with certain hospital appointments rather shook me. And made me think about what I should do, particularly on the work front.

Tried really hard to make the best of my Saturday with the boy, even though he was cranky because of the virus. He spent Friday afternoon constantly wanting Mummy and Saturday constantly wanting to go to see auntie. I explained she had gone out but he was unconsolable.

Eventually, he calmed and we agreed to go to the shops to buy cake and milk. Happily wandered round the shop. Happy to pay. But after paying, he said he wanted to go to auntie's house. I explained for the umpteenth time that she was out. So, he broke down at the checkout. Tears, beating his head, slumped sobbing by the buggy. I tried to explain again but it was useless. Everytime he let go of the buggy or was distracted momentarily by another customer, I moved the buggy forward a few inches. Took us half an hour to get to the front door of the shop. And then he seemed to notice the automatic doors for the first time. Spent ages sitting on his trike watching them open and close. He was so impressed. Kept pointing them out to me as if I'd also never seen them before.

But by the afternoon I was worn out in that end-of-week way. Just too tired to enjoy him. Just doing minimum cares to get me to the end of the day and his bedtime. Nothing I haven't known before. But added poignancy now that there are a finite number of Saturdays. Who knows how many. I need to do something about work. I don't want to get to his end with regrets that may stalk me.

Heart it races

Apparently, the average child of 3 has something like 40 illnesses a year. Well, the boy has either had a low level one for the past couple of weeks or a succession of illnesses.

The wife rang the doctors about the boy as he has had a temperature on and off for the last few weeks. The 40 illness statistic was from the doctor who rang us back (not his usual one). She was cheerfully telling us about "normal" children and illnesses and not to worry. Her brain not taking in that the boy isn't "normal". This was after the wife had explained that the boy has a trachy and a brain tumour. Had it been face-to-face I'd have been tempted to slap her or rather to have stopped her and told her to listen to his situation. Like normal children have reduced immunity from chemo. Like normal children have trachys. Like normal children have had three brain operations. Pah! If it's not his usual doctor, the local doctors are not much use to us. They probably spend so much time seeing minor ailments that they have difficulties when faced with something serious.

Difficult day at work at the end of a difficult work week. But probably not as difficult a day as the wife. The Community Nurse, the Oncology Nurse from the local hospital and Paediatric Palliative Care Consultant from the local hospital all came over. They were starting to do the planning for the future. Do we want to spend time at home or in hospital? Do we want him treated if he's ill? And other happy issues. This was just a starter. We have a full-blown meeting to come in the next few weeks.

Meanwhile, the boy spent a thrilling hour standing on a chair so he could see the girl next door over the fence. He adores her. She is 7 years old and a thing of wonder for him. And she had a friend from school round. He was ecstatic when they were prepared to fetch a ball he was throwing over the fence. It is rare that something makes him giggle uncontrolably but this did. Was lovely to see.

Like a child

Never a dull moment. The boy has another very high temperature - out of nowhere. Might be a general kiddie illness. Might not. And always the fear that it is the start of the end, given how fast his type of brain tumour can grow.

He was fine in the morning. But got sleepy in early afternoon. Eventually, went to sleep with Mummy and then put to bed. She took his temperature. It was higher than we've seen before. Gave him something for it and after a hour or two his heart rate started to decline and he maintained his breathing in air.

Wife a bit tearful. Me shaky and fearful.

But by early evening after three hours sleep he woke up. Clearly thought it was morning as he wanted the lights on, the blind up and the TV on. Took me a while to persuade him it really was evening.

Then wanted to go downstairs and spent the rest of the evening playing happily as if nothing had happened. Very active and as cheerful as you like. Finally got him bathed, trachy tapes changed and story read not long before my own bedtime. He still looked full of beans. The medicine will wear off in a while and we will see then if his temperature goes up again.

Tell me now

Granny came round. The wife told her that we had decided not to have further treatment for the boy. Granny is in partial denial, seeing no treatment as giving the boy a breathing space before curing him.

Found work particularly difficult. Mostly, I've been able to manage to separate work and domestic life - even when the wife calls and blurs the boundaries. But couldn't do it either yesterday or today. Far too preoccupied. Seeing all work issues as completely trivial, especially when people are defending their work areas or avoiding agreeing to delivery commitments. Hardly the best frame of mind in which to work towards getting buy-in to a new programme. Want to be able to tell them what to do, rather than get them to own what they do. Hopefully, that will pass.

Get the bearings

A day of contrasts. His future life and the end of his life.

Spent the morning at a speech and language therapy session. Trying to get strategies to help the boy's language development. To help him build his vocabulary. To help him move from single words to sentences. To help him communicate outside of us, auntie and granny.

Then we had a bit of free time to finally discuss properly where to go for the future for the boy. One of the most difficult discussions for the wife and I. More difficult even than last autumn's discussion on whether to put him through further surgery. That was about the level of risk we were prepared to take in order to get a cure. This time was about what level of risk we are prepared to put him through to extend his life.

In the end, after much soul searching we have decided not to pursue any further treatment. This is on the basis that off treatment we stand the best chance of allowing him to have a life, however short, with the best chance of remaining out of hospital. Until we get to the end. The alternative chemo treatment might have allowed us to hold the tumour for a while, even if there was no chance of a cure. But being on chemo is no soft option for him. Reduced immunity would have given us a high chance of him having secondary infections. These would almost certainly have meant long periods in hospital. His trachaeostomy and chest weakness make this a racing certainty. And our experience of March's infection show that this is not a good quality of life for him with a serious risk of ending up on a ventilator. Having managed to get through an infection without going to hospital last week shows the possibilites without chemo.

Glad we have finally made a decision. But not one I hoped we would ever have to make.

Living in a box

The boys did have a nasty virus. Had a very high temperature. But a combination of paracetamol and ibuprofen constantly for 48hrs kept it under control. He is not completely over it but looks much better. A normal kid illness and happily not one that has affected his chest. Did sleep much less well for a couple of nights with the nagging fear of having to make the middle of the night call for an ambulance. Sounds a bit over-dramatic but we're not used to normal kid stuff.

High temperature made him restless overnight. So, he woke just before 4am and wouldn't go back to sleep. The wife was expecting a troublesome day. But in the event he was cheerful and happy. Even when she left and I took over. Only when it was getting towards bathtime did he show any real signs of tiredness. We tried to shorten his bathtime/bedtime routine. But to no avail. He wanted the full routine.

Select a soft toy to watch him having his bath. Do sliding in the bath before coming out. Soft toy watches him having his trachy tapes changed. He sits at the top of the stairs to wait for the nurse. He helps her wash her hands. They play a throwing game with cushions. Turn the lights down and play with torches. Then I connect his feed and read him a story. Only then does he lie down for his nebuliser and settle to sleep.

He yawned whilst getting undressed for the bath but wanted to continue as normal. He was very unsteady on his feet whilst walking to the bedroom after helping the nurse wash her hands but wanted to continue as normal. He refused to lie down to have his story read and wanted to continue to sit up as normal. He was cleaning his gastro while I was reading. He started to sway. I asked if he wanted to lie down. He vigorously shook his head no. But his head started to loll. In a rather cartoon-like moment, I flicked his shoulder and he gracefully, slowly fell into the pillow. And was asleep before impact.