The Garden of Blighty

The garden makes the boy nervous. I say garden, I mean little courtyard. I say little courtyard, I mean postage stamp of concrete.

The garden has gravel and uneven surfaces. All of these worry the boy as they throw his balance problems into focus. We had been pretend cooking and needed some mint from the garden. Initially, he made me carry him whilst we went outside to get it.

Since it was a pleasant evening for a change, I was showing him other plants. He spotted a ball he had thrown from the safety of the doorway a few days ago. And his little watering can. This encouraged him to want to do some watering. I left him on the bench and went to get his shoes. With his shoes on he was happy to do watering whilst holding my hand for support. Eventually, he did have a few forays on his own round the garden. Carefully picking his way round and crouching down to water the pots. He gets so upset if he spills water outside the pot because of the mess. And worse if he gets some water on himself.

After a nice time, I expected to sleep well. But it was not to be. Restless sleep filled with stress and anxiety about work. And, inevitably, about the boy. Couldn't help recalling that there are only five children who we have met in hospital that we have kept in contact with over the last two years or so. Of these, two are doing fine. But three didn't make it. Not a representative sample but doesn't cheer me much.

Sugar crystals

The boy had a big trip to the market, petting zoo and playground with Mummy. Played with a little girl. She encouraged him to go in the sandpit. He doesn't like sand, so wasn't very keen. But he did go. He went on the slide in the sandpit which had sand on it. He started to get upset. "Don't panic" said the wife. "Yes panic" replied the boy. When he came home he looked tired, but not so tired that he didn't want him and me to make biscuits.

Carnival of sorts

There may not be many precious moments left with the boy and I can't capture them so they will last my lifetime.

I look at what others write that capture the essence and poignance of a moment. Mine seem prosaic and stacatto reports. I feel this acutely at the moment. I want to store up happy memories for the bad times ahead. A source to dip into of strength for the tears to come.

We went to auntie's house yesterday. Had a great time. There was nothing special about it. But it was a warm sunny afternoon in a summer of wind and rain. The boy was in a good mood and was happy to let auntie and I talk intermittently while he watched TV or played with toys.

After he and auntie had made tea and coffee, we sat in the garden. The boy was very excited as the black cat was there. The boy poured him some milk and then sat on the bench to watch him. I sat on the doorstep enjoying the sun - not something I ever do during the week. Auntie sat by her flowers. We chatted about nothing much amiably with the fragrance of lavender adding to the warmth. The rustle of her bamboo like a whispering screen from the rest of the world. And the pink bouganvillia a showy, exotic splash of coulour contrasting with the deep green of the fig.

The boy got the confidence to go and stroke the cat. He kept gathering his confidence and then tottering unsteadily towards the cat, only to have the jerkiness of his movements startle it into moving to a different part of the garden. After he had stalked it unsuccessfully a few times, he managed to get near enough to crouch down beside her. He put out his hand with some trepidation and was able to restrain himself to stroke it gently. He was thrilled when he had managed it.

Eventually, the cat decided to go somewhere else. The boy waved goodbye and we went back inside.

A wish away

"Man"
"Big car"
"Lights. Yellow, green, blue, pink"
"Stamp, stamp"
"Yellow train. Not mine"
"Justin. No Mr Tumble"
"Ambulance"
"Don't be sad. Next time"

This was the boy's explanation to me of his "Make A Wish" day. He hasn't been well over the past couple of days but the wife and I ageed he seemed just about well enough to do it. So, off he went with Mummy. And I went to work.

He had been collected by a driver in a stretch limo. The limo had fibre optic lights inside which changed colour. He thought the car and especially the driver were great. He had enjoyed watching cars and buses from the limo.

They arrived at the TV studios and saw a couple of ambulances being used for a hospital drama. He went to see Justin Fletcher (a kids TV presenter) who, crucially, plays Mr Tumble. The boy had brought a painting of a flower for Mr Tumble to look at if he felt sad. Justin agreed to pass it on.

It is odd. The boy knows that Justin is also Mr Tumble in funny clothes and a red nose. But he also sees them as two quite separate people. Occasionally, when Justin is on TV I will say to the boy "look, that's Mr Tumble" and he will say "No, Justin. No red nose".

The boy was a bit upset to hear Justin rehearse Mr Tumble without the clothes and red nose. But was mollified when told that he was Mr Tumble's friend. And then really enjoyed it.

We had originally thought that the boy could go home by train. But had agreed given his condition that it wasn't sensible. Unfortunately, the wife forgot to say this to the person accompanying them who said it to the boy. He was thrilled and wasn't to be denied. The boy thinks he has special train-summoning powers. He stamps his feet on the platform and a train appears. It was an overground train not his usual tube train, hence the not mine comment.

On returning from work, I asked the boy if he had had a nice day. He said yes vigorously and then explained the highlights. Mummy had told him I couldn't come as I had to work, which is why he told me not to be sad and I could come next time.

Thanks to Justin and Make a Wish for giving the boy a very special day.

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, tantilisingly 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.

Bath House

After the weekend's excitement we are keeping it low key for the boy in the hope that hope that can kick the cold and get off oxygen overnight.

He has a big week or so coming up. At the end of this week the Make A Wish people (pushed by the hospice) have accelerated arranging for him to go to TV studios to meet his favourite TV character - Mr Tumble. I won't be able to go - work. And at the end of next week, he has his re-scheduled gastrostomy operation.

Meanwhile, bath time has got a bit more interesting. He has stopped wanting to have a bath with Mummy. I have been saying for a while that he is too old but she likes it. Then, on Saturday night after I got him undressed, he said "Mummy out of the bath". She didn't believe him but he meant it. Since then he has refused to have her in the bath. He wants to bathe alone. Makes baths a bit more tricky as the bath is slippery and there's the worry of water on his central line or, worse, down the trachy. We are all getting used to the new routine. But he delights in shrieking as he slides around the bath, splashing vigorously. And I age visibly as I try
to cling on to his arm.

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 aunties 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.

Eat Me Drink Me Love Me Kill Me

The boy's gastro feeding tube is over two years old - they are only supposed to last for 18 months. He was supposed to go for an operation to have it replaced today.

The hospital were very keen that we did not cancel. We had been concerned that his chest infection would make it a risk he did not need. Despite the need to the operation we decided it was best to cancel, even though he seemed much better yesterday.

Lucky we did. He did not have a good night and ended up back on oxygen overnight, with a temperature. Hope the gastro will last for two weeks until the next slot for the operation is available. And hope he will be well enough by then.

Middle School Frown

Got a phone call in the afternoon from the boy saying "More nursery!"

The boy has been slowly recovering from his chest infection. The wife considered him well enough to take him to the meeting scheduled with the nursery. We have been discussing the nursery with him for a few weeks. He has always said "No nursery" and no amount of saying it will be like the nursery on TV has shifted him.

But when it was time to go, the wife said he was going to the nursery and he was really pleased. Rushed to put his shoes on and bounced up and down in the buggy all the way there. He was very happy to wander round and ecstatic when he saw a panda toy there. But threw an almighty strop when he had to leave. Hence the phone call to me.

Walk unafraid

Just to add to the fun, the boy's got a chest infection. Needed oxygen overnight for the past two nights.

The boy started to get ill on Sunday. Secretions going yellow. And a temperature. Secretions full on custard yesterday. Puts Friday's operation to replace the gastrostomy in doubt.

That's the thing about a seriously ill child. You never know what's going to happen from one day to the next. Forward planning so difficult. Not always time in which to absorb one set of news before the next thing arrives. You just have to keep going whatever.

Word Up

The first signs of decline may just be in evidence.

Before we got the scan results I had noticed that I was starting to find the boy's speech a little bit more indistinct. As if the paralysis of the right hand side of his face was a little bit more pronounced.

I didn't say anything for a few days in case it was just me being tired and not focusing properly. Then I mentioned it oh-so-casually to the wife. She said she hadn't noticed and it was either my tiredness or the range of new words he was learning. Both possibly true. But this morning the wife said she was tired from having to work harder to understand him.

Feel a knot of fear in my stomach as if writing this down makes it more true and hastens the end. Also, one of those rare mornings when the sounds of next door's kid playing and the sight of the parents lounging around make me unreasonably angry and jealous.

Staring Down The Barrel Of The Middle Distance

A lovely day. An upsetting day.

Before the boy woke up, a little time to sit and think. First time for me since we got the brain scan results. More than a few tears. The first time in over a year. Finally allowed the shock of the awful results to hit home. Had to postpone it to get through the working week.

Hard working week in which to get the results. Perhaps even a sense in which that weakness and distraction exploited by others. All about money. Maybe hundreds of jobs at stake but really it's not people but money which matters. Seems so trivial when set against the end of a life. A life hardly lived.

The boy was on good form. Happy and active. Not much TV watching. Renewed interest in Big Cook Little Cook, means he wanted to do some cooking. That he won't eat any of it is no matter to him. Happy to do pretend cooking. But keener to do it for real.

Long trip to the shops to get the ingredients. Lovely moment on the walk home when the boy was outside a shop playing hide and seek with a boy inside the shop. He was laughing and thrilled at the attention from another child. Hard to hold back tears. But mustn't let the boy see. Spent the afternoon using the Big Cook recipe book making biscuits and cheesecake. Boy very proud of his efforts.

Eventually, had to leave the boy with the wife and go for a short walk. Ended up at the cemetary. It is quiet and peaceful. Good place to think. Reassuringly old. But I used to take the boy there when he was a baby to get him to have a nap. Then it was thoughts of what his future would be? How was I going to be as a parent? When would we be able to have a conversation? But now thoughts of death. Burial or cremation? When to make arrangements? What is the future for the wife and I without him? All too much jumble of thoughts.

Can't get you out of my head

Bad. Very bad. Worse than bad.

Saw the consultant today about the boy's brain scan. You always try to anticipate the news by judging body language when they call you in. But you never can.

She said that not only has the tumour regrown from the original site but that there is a new spot in the brain stem.

She offered to get a surgical second opinion or a chemo second opinion. But the chances of anyone being prepared to operate in that part of the brain stem is low and the risks would be so high that we wouldn't take it up. Secondary chemo is experimental and our own research has shown that there is nothing out there that looks as if it will help. So we've decided against that on the grounds that the likely benefit is low and the chances of illness are high. Don't want to spend the time left in hospital.

Where does that leave us? I guess, struggling to accept the enormity that he's going to die. And there's nothing we can do about it. Timescales? Always hard to know but given the growth since the end of March, not long. Maybe a matter of weeks or months. Probably by the end of the year. He is unlikely to make his fourth birthday in December. And it's a concept he's only just starting to understand.

The location of the new tumour means that he is likely to have mobility and breathing problems at some point in the summer, which may hasten the end.

The wife broadly held it together in the meeting but had a wretching sob afterwards. She did pull it together - "we will have time enough to cry when he's dead" has to be our mantra. Let's hope we can manage it. I just felt numb but functional and had to return to work.

Coming home was like a dream. The boy was the same as I left him, though I was studying him intently for signs of change. He was playing hide and seek and getting cross about having to stop watching TV and have a bath. But gave me lovely cuddle before Mummy read him a story.

Another brick in the wall

Tomorrow's the day for the brain scan result (MRI).

MRIs govern our lives. They happen every three months. The closer they get the more the tension rises. So much rests on the results. The wife and I tend not to talk about our fears before the scans. Partly, we don't need to as we know what's at stake. Partly talking about our fears makes them seem more real. But the not talking about it means we don't address those fears and tend to snap at each other. Not a good recipe for a harmonious relationship.

Then there is the period between the scan and the result. Usually, it's a week. May not seem long but is an eternity to us. Makes it so hard to enjoy life with this thing looming over us. Sleep is often hard for me. It is either too short or dreams are filled with with anxieties and fear. And we get paranoid about the boy's behaviour. You can't help wondering whether any tantrum or change in behaviour is a result of headaches from tumour growth.

Cakewalking

"It should be more fun than this." Something I usually think but don't say to the wife. But unusually she did today.

A quiet weekend. Kept it that way given the temperature he had for 48hrs earlier in the week.

Saturday was my day with the boy. We were both tired and crabby in the morning. Neither of us had quite enough sleep. But eventually we both cheered up. Went to auntie's via the shops. The boy was happy to see her. Went back to the supermarket later to buy Thomas the Tank Engine cake mix. He may not eat them but does love making them.

Sunday, had a short lie in. Whilst the boy and the wife went to the market, I cleaned the house. The boy tired quickly, so not all done before they got back.

Me and the wife tired and tetchy. Neither had enough rest. Both inclined to snap at each other. Best kept apart, so I made cakes with the boy whilst the wife had a rest. He loves the process of making them and the stirring of the ingredients. He never wants to eat them, even if offered, but happy if we do.

The general feeling that we have to make the most of the time we have with the boy. But too tired to do so. The spectre of the MRI result to come. May not be good news. Who knows? But the certainty that if not this one, then the next one or the one after that.

Daysleeper

Early start this morning. The boy's off for his brain scan.

Had to stop his overnight feed early to ensure he was starved ahead of the general anaesthetic. Then allowed water but nothing at all by 5.30am. Before gettng him up, we did the last minute packing of medicines, toys, nappies and reassembling the suction pump that had been on overnight charge.

The nice woman who drives him to hospital (the wife having to be in the back with him for suctioning) came at 6.45am. Got him dressed and shoes on by 7am and then waved them goodbye. Got myself off to work.

He ended up going down for the scan at 10.30am. All went ok. Had a long sleep on the ward afterwards. In a bit of oxygen but passed when he woke up. General anaesthetic depresses breathing, so it's always a slightly worrying time the 24hrs thereafter.

In the evening he was very subdued. Went to sleep early but running a bit of a temperature. Hope it is nothing serious (how often have I written this?).

Then had a difficult late night discussion with tearful wife. She is worried about the boy going to nursery. Will they look after him properly - do they really understand what they are taking on? Will he cope with other children and the rough and tumble of the nursery? Will he end up being ill all the time? Eventually, she fell asleep in mid sentence. I followed soon thereafter, into an anxious sleep.

Somewhere down the road

After what seemed a brief sleep on Saturday night it was back to the boy, whilst the wife had my lie in as a birthday present (who said romance is dead?).

I looked rough but the boy was perky and cheerful. Wanted to get downstairs quickly to play. Was very keen to see auntie. Bought him off by taking him to the market. The wife normally does this, so had to ask the boy which stall to go to. Bought bread and sausages. The sausage man was pleased to see him and very sweetly gave him a toy car. He does manage to charm adults.

Then we went to auntie's house for lunch for the wife's birthday. The boy was well behaved whilst we ate.

This week sees the boy having various hospital appointments and crucially his next brain scan. We then have a nervous week before we get the results.

Abandon (Junior Boys Own Mix)

On my own with the boy today. The wife's gone off to a healing event with her sister.

Been a tough week after the emotional wear and tear of Monday's meeting. Had myself a renewed bout of agonising about whether we should have put him back of chemo, even without curative intent. Renewed guilt about not being able to save him. About not doing more to seek out new treatments. I should be contacing specialists, someone, anyone. But I don't know where else to go.

Want it all to go away. Want to believe that how he is now will last forever. Want normal problems. Want to worry about university fees not funeral fees.

None of which thoughts were helped by having to manage on three hours sleep midweek when the night nurse didn't turn up. With his cuff inflated he can't call out and so has to be watched. The wife did until 11pm. I did until 4.30am. She did until 7.30am and I did until 9.00am. And then I went to work. Hard to get that sleep back. Especially as I have offered to forego my lie in so the wife can make up for her sleep tomorrow.

Weather was awful. Heavy rain with very short periods when it stopped. The boy was keen to go out. So in a rainbreak I bundled him up and we went to the station to go on the train. He was very excited. So much so that he did not want it to end and kept asking "more train?" as he was worried we would get off at the next stop. Went to Borough Market. Bit of a mistake. Too crowded for the buggy and he spent the whole time complaining for "more train". Were only there less than half an hour.

The boy was sooooo happy when I gave up and we returned to the station. Happy to wait on the platform for a long while and let trains come in and go out. I wasn't bothered, since we had nothing pressing to do, except make his medicines. Eventually, we got on a train. Like a proper little Londoner, he wanted to stand up. Considering his balance is so poor, he did pretty well. Then, to make the experience last longer, he got off the train. We sat on the platform and watched more trains go by before getting back on a train. Two stops later, we repeat the experience and so on until our station.

Was pretty wiped out by the time the wife got home. Nevertheless, had managed to buy enough food for a nice meal and a pricey bottle of wine for her. However, as we were getting the boy ready for bed, the nurse called to say she was stuck in traffic and didn't want to come. Not impressed. After some frantic calling round we found someone who was prepared to come. She turned up at 10.15pm, so the nice meal got iced and replaced by readymade pizza. Couldn't even be bothered to have some salad as a pretence at healthy eating. And so to bed.