Final Straw (Move On Mix)

This blog and the earlier blog record 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 this blog ends with the boy's death and funeral. We will have to find a way of carrying on without him.

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It's now time for the boy and little panda to wave goodbye and go and hide.

Last Tribute

Address from the boy's funeral:

The boy was born in December 2003. He died on 30 September 2007. He had a brain tumour which eventually got the better of him. In that time he had three lots of neurosurgery. He had three rounds of chemotherapy lasting a total of eleven months. He had six weeks of radiotherapy. He spent almost a year of his life in one of three hospitals. He had a trachaeostomy, a gastrostomy and a central line. But to think of the boy in terms of his tumour, his medical needs or a tragicly short life is to miss the point.

The boy never saw himself as defined by his illness. If you asked him he would say he'd had a great life. He saw life as a game and an adventure with new experiences to enjoy. One in which Mummy and Daddy were always with him. No mother could have done more to make him feel loved and special and in turn he loved Mama. Hospital was not something to be feared but an adventure to be enjoyed. A home from home holiday camp. There were ambulances to be found and touched. There were doctors and nurses to be waved at and hugged.

And there were those who would take him to hospital in their red or blue cars to meet. Hospice people who would come and play. Carers to come during the day. And after his bath, waiting on the top of the stairs for the night nurses. He always wanted to help them wash their hands and play night time games. At home there were the neighbours to wave at or the special thrill of playing over the fence. There were always a whole range of new people to meet who would make him feel special.

He loved nurses, ambulances, buses, pigeons, trains and pandas. The boy also had his own interests. He loved to cook and paint.

He couldn't eat. But this never bothered him. His great pleasure was to cook. Cooking inspired him as a creative pleasure. He could spend hours making recipe after recipe. Pretend cooking was always a poor substitute for the real thing.

As for painting, he loved colours to be mixed before he could start. Each colour had its rightful place on his palette. And he had a favourite colour - yellow. His painting was precise and delicate. And he always wanted to show me what he had done when I came home from work.

But he also loved pandas. He had his own pandas - baby panda and little panda. Little panda always came with him to hospital and had his own central line. Lawrence loved to play nurse and get everything ready to change little panda's dressing and bung. He knew everything that was required to prepare and how a dressing change should be done. He had paid attention when the community nurses did it. He had a good bedside manner and made sure little panda wasn't scared when it was happening, saying "good boy. Good boy" to reassure him. Little panda is with him now.

And of course there were auntie's pandas - big panda and chi chi, his favourite. No trip to auntie was complete without each panda being carefully kissed on both cheeks when it was time to leave.

He was a boy who circumstance had made mature beyond his years. He didn't waste time feeling sorry for himself. He was a beautiful boy, with a warm smile and an ever-positive cheery nature. He didn't see himself as brave, he just just got on with his life.

The boy didn't discriminate. He was sociable. He wanted to be your friend. Friends, family and medical staff were all the same to him. It was whether they would engage with him that was important. Whether they would take time to play. The boy was very inclusive. Always asking visitors if they wanted tea or coffee. And then toddling off to make it. If one person got a hug everyone got a hug.

He would always ask us "what's next?". I don't know what's next for him but I hope he's still having fun and giving pleasure to others with his zest for life and his generous spirit. He will now probably be on a train with all the pandas. Or he will be mixing colours in his palette to paint rainbows in the sky.

His warmth and generosity left a deep impression on people's hearts. We had such a short time with him and we deeply deeply wish he were with us now. But he isn't. So we will have to rely on those precious memories he has left with us and with others.

Finally, saying goodbye was very important to the boy. No-one could leave his hospital cubicle or leave the house without him waving them off. He got very cross if he didn't get to say goodbye. He can't say goodbye to you now but I am sure he would want us to say thank you for coming, to wave you goodbye and as he would say don't worry. Don't be sad.

Cakewalking

Getting ready for the funeral tomorrow. Like preparing for a party you don't want to go to but is important goes well.

Did cooking for the party. Four of the boy's favourite recipes. Seemed a good idea a few days ago. But was much harder than I imagined. Doing them without him was painful and a reminder that a recipe was the last thing we said to him before he died.

I went to see the boy at the chapel of rest. Sat with him for a while and said my goodbyes. No epiphany but have to accept that he is not here, that is not him and this really is the end.

More than a feeling

The grief cycle: Shock, Denial, Anger And Guilt, Despair And Depression and Acceptance.

I know in my head he's dead. I was there when it happened. I felt him cold. I was there when the doctor certified him. I was there when the undertakers came to take him. But in my heart I can't believe it. We spent so long working to avoid it, nursing him through one chest infection after the other, through one course of treatment after the other. He can't really be gone. We can't really have failed. He must be here somewhere.

It is like waves on the shore. The realisation crashes in on you, then there is a period of numbed calm whilst the next wave draws itself up before breaking over you.

Letting go

Have to start letting go.

Occupational therapy came over to collect the equipment he had been using in the last month or so. Harder was the Community Nurses coming to take away all the medical equipment, consumable medical supplies and the medicines that littered our spare room. Saw the spare bed for the first time in over two years. Looks so empty now. The wife found it especially hard. She had been responsible for ensuring that we had a months supply of everything. Two car loads of stuff. But they kindly left the bed - the hardest thing to let go.

The wife and I can stay up late, get up late, go for walks, have coffee whenever we want, comtemplate nights out and holidays. But we'd swap it all in an instant to have the boy back. But we can't.

Gone

In a couple of hours it will be a week later. Seems both a blink of an eye and an eternity since he died. Time seems suspended somehow. Or perhaps it's that I just don't care about what is happening around me now. Nothing meaningful to fill the time anymore so it dribbles by and sleep doesn't come easily so the days last longer.

Daydreaming

Time continues to move on with an unreal quality.

Generally calm today. Visited a friend as I occasionally did when the boy was in hospital and I had the morning off. But then came the smack in the face of the visit to the funeral directors. Horrible having to get together shirt and trousers for the boy's funeral. Prepare a last vest and get a clean trachy nose. No socks or shoes as he never liked them.

Felt sick as I walked there past a park we went to only a month ago and where he asked for a bike for his birthday. I knew then that it was unlikely I would have to deliver on the promise. But the finality of it still hurts. Watching with emptiness and yearning the kids playing on the climbing frame that the boy favoured. Unable now to go in the park - adults not allowed unless accompanied by a child. And I'm not a parent anymore.

Time after time

Time moves inexorably on.

You want to freeze time. Stop it so it doesn't take us further away from the boy. Keep us close to him. But you can't. You only have memories to rely on. No more adding to them.

Ring of Fire

Went and saw the crematoria. Sorted the funeral.

We went to see the two crematoria in our area. One was scruffy and a bit hopeless, though the brochure made it look very nice. The other was better maintained and we found a nice tree as a site for the ashes. Putting him among flowers didn't seem right as we never had flowers in the house because of the infection risk from the water the flowers would be in. I was pretty useless as we went round, too upset to engage. Left it all to the wife.

We let the funeral directors know and the funeral is fixed for next Friday (12 October). Also, went and signed all the forms for the funeral and cremation. Auntie has kindly offered to do refreshments afterwards. Next job is sorting the service and flowers and sending invites.

Went to auntie's house later. So sad not to have the boy seeing auntie's pandas and giving them a kiss. Made more difficult by looking through auntie's photos of the boy, even though we wanted to see them. Brings home how happy he was but also what a short timespan they covered. Just reinforces the sense of a life cut short and the unfairness of it all. How stoical he was. Pictures of him after his operation, big bandage on his head and tubes connected but still playing with her and the pandas. And smiling.

Further down the road

I wasn't going to write anymore but it might help to make sense of all the shifting emotions, so I will keep going until the funeral.

SUNDAY

Sunday was a strange day. The wife and I stayed with the boy, talking to him and stroking his hair and hand. We had always been with him in life and couldn't find it in ourselves to leave him in death. We waited until dawn, and then one of us stayed with him while the other made the news available to those who needed to know, starting with the doctor.

Even though she wasn't working at the weekend, our GP very kindly came round to do the grisly ritual of checking he was really dead. She was in tears as the got out her stethascope and checked his pulse. He was so cold by then it was just bizarre to watch.

She didn't have the right certificate with her, so the boy couldn't go anywhere. We weren't ready to let him go, so weren't too bothered. The wife was in overdrive and spent most of the day talking and crying on the phone, pacing endlessly round the house. That meant I was able to have quiet time with the boy. I tried to reconcile that his passing for the best, given where he had got to, with the lovely happy boy we had lost and with whom we had such little time.

In the evening one of his night nurses came round with some food. I helped her get it from the car. There was a lot of it. How many people do you have she said. Errr... just me and the wife I said. She was appalled that family and friends weren't with us. Being Sri Lankan she saw this as hugely improper. People should be with you for 48hrs. We Westerners do death differently I mumbled. It's not like people haven't been round. Later, she was kind enough to sit with the boy while the wife and I ate for the first time in 24 hours.

We couldn't work out what to do for the night. We couldn't go to our bed and leave him alone. After a confused discussion, we decided to stay with him. We dragged the matress into his room. It was very cold there, no central heating and the window wide open. I wasn't sure I could sleep in his room but after forty hours without sleep I eventually succumbed. It felt like our last time as a family together.

MONDAY

Inevitably, I woke up on Monday at my normal time to take over from the nurse. But it wasn't necessary anymore.

There were more visitors and I stayed with the boy while the wife dealt with them. After being numbed into calmness on Sunday, the realisation that it was all over and everything our life had been built around was gone sunk in. It was more than I could bear. I told him that we loved him. That I didn't know what we were going to do. And that I was sorry we had failed to keep him safe. But we had tried our best.

The wife and I agreed that we couldn't keep the boy endlessly. And it was meaning we spent no time together. So I rang the funeral directors to tell them to take him late afternoon. This fixed deadline gave an end point for the wife and she finally stopped rushing round and spent some time with the boy.

And I dealt with my mother. Grief is a funny thing and unpredictable in what it makes people do. As for my mother she will obsess about a minor thing rather than focus on the big thing. She was very thrown by realising that the boy was in the house. She had expected us to have got rid of him that morning. Instead of dealing with it she complained that she was supposed to be on holiday next week. And if the funeral were next week, this was the third holiday she'd had to cancel. I didn't pursue it but assumed that there were other holidays that she'd cancelled over the last couple of years when the boys health had been uncertain. Turned out that the first was thirty (yes, thirty) years ago when she'd come back early because my grandmother had died. And the other was five years ago when my father had a heart attack the week before their holiday. She asked if I would think it bad if she didn't come to the funeral as it was her last chance to have a holiday in good weather this year. I didn't really think she wouldn't come but said it was for her to decide but I wasn't arranging the funeral around her.

I had a few minutes with the boy before the ambulance arrived to take him away. Not long enough. They asked if we were sure we were ready. I choked out that we were, whilst wanting to say, no you can't have him. They took him in a Moses basket along with little panda. The wife and I stood pathetically at the doorstep watching it go off down the road and then turned to face our first night without him.

TUESDAY

It's not the toys everywhere that get you it's the little things that catch you off your guard. Like noticing that there's a bowl of beaten egg in the fridge ready for cooking he will never do. Like noticing a book on a high shelf we had never given him. Andf then there's the practical arrangements.

Went to the registrars to register the death. On the way remembered making a similar journey to register his birth. It seems so recent, because it was. On arrival the receptionist asks for the deceased's name, my name and my relationship to the deceased. I give the names and on the latter question say "father". She writes son. I say "no. I was his father". Not the usual or right thing to have to register.

In the afternoon we go to arrange the funeral. Discussions of flowers, service, limos, coffins and urns for ashes. The little children's ashes boxes are too horrible to contemplate. We can't decide on which of the two crematoria to use, so will have a look tomorrow.

At bed time, the wife comments on how calm she is and how wrong that feels. Moments later I find her in tears coming from the boy's room having said her normal goodnight words to the absent boy. I know that it will get better but right now it is so, so hard and we miss him so much.

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 to 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 cooling 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.

Four to the floor

Spent a lot of the day by the boy's bed. He settled in the early morning and hasn't woken all day.

The wife and I have taken turns to sit by his bed, watch over him and give medicines as required. He hasn't woken all day. We have no idea if he can. We will leave that until tomorrow. His breathing rate has declined a bit more - down to 4 per minute by early evening. But his colour was good and he seemed settled. Not in any pain. We stroke his hand and talk to him, reminding him to breathe. Auntie came over briefly as did auntie m and Oma.

For now the wife and I are calm, just making sure he is ok and not in pain. There's nothing else we can do right now bit be with him. As we go onto the night things look parlerous as his oxygen needs rise and breathing rate slips again.

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 extermities, 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 breath 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.

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.

How my heart behaves

The chest infection seems under control after a couple of difficult nights. But it doesn't get any easier to deal with.

The boy is so hard to understand. His signs are now so sketchy that even the wife and I have trouble in following them. More and more is guesswork or asking yes/no questions. It can be very tiring and frustrating for us all as he shakes his head when you have asked the wrong thing for the tenth time. But still we paint and cook.

His sleeping is all messed up and he has spent large parts of the last two nights awake. But despite lying-in the mornings everything looks so much of an effort for him.

The Community Nurses came to do bloods and change the dressing for his central line. They also explained to me, while the wife was elsewhere, what to do when he dies (death has to be certified by a doctor who has seen him in the last 14 days or he has to go to the coroner). And they asked if we had contacted funeral directors. We hadn't. So with the wife absent I made the call. Much harder than I expected. Found it really upsetting to be calling about the future death of a little boy. Had a b it of a cry afterwards. But at least it is done and we have the information.

Feel in mouring already. Which is wrong when he is still with us. Funny how grief manifests itself physically. A permanent lump in my stomach and feeling sick. Finding it hard to eat at the moment and eat rubbish when I do.

Every breath you take

His breathing is slow and accompanied by the hum of the oxygen machine.

He needed oxygen again last night. And had a temperature. It came under control. But he has a low level chest infection. The doctor has prescribed antibiotics but his lack of regular coughing will make any infection a serious risk.

The morphine and tumour have slowed his breathing right down. Before, it was 28-30 per minute. Now 12-15. It is disconcerting to hear him breathe and the silence for the next couple of seconds before the next breath. A painful silence. But he is in no discomfort with it.

Pale blue eyes

Time away from the boy is a mixed blessing. Gives you time to think. And that inevitably involves the boy. This may not be helpful.

My lie in today. Read the paper for a bit - a rare indolent pleasure. But then I started to think about the boy. I didn't nean to. I tried not to. I couldn't help it. And bit by bit I crumbled. The tipping point was when I realised I could no longer remember his voice. And would never hear it again. Without work to brace myself for, there was nothing to stem the ebb and no reason to. Found myself wandering into his bedroom to smell that he was still with us. The scent of medicines and equipment. The smell of his clothes and pillow.

I could barely bring myself to go downstairs. Seeing him mute and immobile set me off again. It took me a couple of hours and a short walk to get it back together. Not very helpful for the wife. When it is just me and him I put music on so there's not just the sound of my voice.

The boy barely has the wherewithall to shake his head or nod. The tumour or the morphine, I can't be sure. But as someone said tonight, a couple of days ago the body was gone but the eyes were still there. Now, not even the eyes. Makes the sounds of the kids next door all the more painful. It's not their fault but it is as if their normality is just rubbing salt in the wounds.

You are the everything

Tricky day. Long sleep the previous night counter-balanced by short sleep the following night. Add tired father and not a good combination.

The boy was awake for 4 hours in the night but asleep when I took over. Woke up within half an hour. Meant I had couple of hours without help. This is very hard now. Delayed taking him downstairs for a while. Relieved to see new carer. We did painting for a while until he looked tired and flushed. Hard to know if he needed extra morphine as it is so hard to tell if he is aggitated ie in pain. His face is impassive, capable of little nods for yes or shakes for no. And his right arm can still move but the signs are very unclear. Makes working out what he wants a frustrating lottery. Decided not to give morphine as his flush came and went.

Was relieved when the wife got up and a friend arrived to share the load. I was positively homicidal with hurt and tiredness. Then auntie m arrived with new boyfriend. What an introduction for him. The boy did cooking but looked increasingly tired and distracted, so I took him to bed. He complained feebly and soon fell asleep. Let him have an hour and a half until auntie arrived with pandas. Something nice for him to wake up to. They did painting while I had a break. After she left we did more cooking until bed time.

I had thought he had been pretty stable over the last few days. But the nurse who saw him only three days ago was shocked and upset at his decline in that time. Just goes to show how difficult change is to see when you are with him all the time.

Trouble every day

Not a great night for the boy. Needed oxygen for the first time in ages. Worries that this is the breathing difficulties that we have been fearing and thus the start of the next phase.

The boy needed oxygen overnight and on waking but it wasn't really keeping his levels up. The hospital say keep on with the oxygen but if it doesn't work and he's not in pain there's not much else to be done.

My final day at work. I have finally accepted the wife's encouragement to be signed off work. Work were very good about it. I had been resisting it up to now as I fear I will not return until after he is dead.

He was quiet when I got home but did some painting and overseeing cooking but moving his arm is clearly a tremendous effort. Then a quick visit from one of his night nurses who hasn't seen him in ages and bed.

You wonder

The poor little boy is so stoic in the face of what must be appalling pain in his head.

The boy had an unsettled night, despite regular paracetamol, ibuprofen and morphine. He was asleep when I took over but his arm and leg were moving jerkily. And his face was pink. It made for uncomfortable watching. When he woke it was distressingly clear that he was in discomfort and he wasn't really with it. His eyes were open and his arm was pointing down (monitor off my toe), to his neck (lower my trachy cuff) and out (I want to go downstairs) but they were almost reflex actions as he was not fully conscious. He was not responding to me otherwise. All that despite an extra dose of morphine.

We ended up giving him a higher dose of morphine and a steroid for the swelling in his brain. And after a couple of hours he sort of regained his focus on the world. But his arm is terribly weak, worse than yesterday. And his hand is able to do a few rudimentary signs but nothing else. His face is impassive as can can't make any expressions. Makes it so difficult to know what is going on in his mind and work out what sort of quality of life he has now .

He played a little bit but most of the day was spent quietly on the sofa, listening to the TV. Watching seems too much of an effort. He dozed on and off through much of the late afternoon. I kept stroking his head but I bet that was more irritating than soothing.

We got him ready for bed but he pointed vaguely in the direction of the bathroom. This was the most engaged he had been all day. After a quick bath, he just about had enough wherewithall to insist on a bit of play before bed but looks wiped out. I hope he has a better night.

Staring at the sun

There are no good days now. But this one was bad by our low standards.

Went to work but had to leave early after a worried call from the wife. She was very concerned that his vision in his remaining eye was going. When I got home the boy was not really responding to questions and couldn't say how many fingers were being held up. We gave more morphine and he sort of came back to reality. The symptom care consultant came over (following a call from us and chasing by Community Nurses) and said that as he had responded to morphine it probably wasn't his vision but pressure in the brain from the tumour ie a severe headache making him unresponsive. Also makes his eyelids swollen.

Even so, he was just about able to focus on painting. But he wanted the home schooling woman to use her hand do the painting - he adores her. And we have upped his morphine dose. He then spent a long time in front of the TV before overseeing more cooking, though this required another dose of morphine.

His right arm seems much weaker than yesterday. Able to point and do a few signs but not to properly grip spoons or other implements. And his head control seemed much worse.

At bed time, he insisted on a bath, which had to be with the wife as he is too unstable to be in on his own, even with support from the side. But he was too weak to insist on the rest of his routine.

Must I paint you a picture?

Got home from work today to find the boy on the sofa with the hospice nurse. Bit of a surprise.

They had rung the wife and she had told them about our fraught weekend. So they had come straight over. And will be back later in the week. Really, really good of them at this time. They have been really good to us over the last two years. It can be so isolating otherwise.

After they left the boy wanted to do painting, as he had done during the day. But his heart wasn't in it. He was just too tired. He had to sign all the colours, there's no speech at all now. Eventually, he submitted to going to bed. We didn't bother with a bath and went straight to a story. He was unsettled so we gave him some morphine. But he was jerky and couldn't quite drift off to sleep before the nurse came. When she arrived he made us do his trachy tapes but didn't have the energy to fight for the rest of his night time routine. So, I read him a story and we hugged goodnight.

And auntie has come up trumps again and got the window fixed.

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?

Breathe with me till dawn

Another difficult day. The boy gets weaker. The wife and I more frantic. Until finally we crack with each other.

Boy was awake at normal time. But after an hour wanted a neb and went back to sleep. Still looks so beautiful when asleep, as if nothing is wrong. Woke him up mid-morning.

We had a nice remainder of the morning watching TV and playing with his drum and tambourine. Then he wanted to do painting in the afternoon. For a change he wanted to sit on the floor not easy when he can't support himself. A mix of V cushions and wedging him upright did the trick. Even more unusually, he used his hand to paint with, inspired by Mr Tumble on TV.

As he tired, which didn't take that long, things got more difficult as what he wanted changed every few minutes. Even auntie coming over only helped temporarily. His speech is now so indistinct and quiet that most of the time you have to guess what he is saying.

By the time it came to his bath, me and the wife were at our wits end with emotion about his all round weakness, our tiredness and general wear and tear. I forgot his evening paracetamol and ibuprofen. Cue sharp words from the wife, with me responding in kind. And ending with both of us shouting. Unimpressive all round.

Sad end to the day. And not an enjoyable day. The days are too stressful, too emotional and too tiring to enjoy.

This corrosion

The boy gets weaker day by day.

The wife's lie in. My day with the boy. Despite a broken night the previous night the boy was up bright and early. He was happy to watch TV between the yawns. But secretions constant, making it tiring to do constant suctioning of the trachy.

The consultant came over for a flying visit, having not seen him for a couple of months. What a contrast for her. Then Granny came, so I got the boy downstairs. We did the usual painting things. The boy's coordination of his right hand gets worse. He is very shakey. Rather hit and miss whether he gets what he's aiming for. After getting me to mix a wide range of colours, he painted a picture of my red and yellow T-shirt.

The wife got up. I got breakfast before she went off for her weekly psychiatrist session. His home school came over and I took the opportunity to strip his bed (he has vomited in the morning for the last two days) and remake it.

By the time I came downstairs, the boy was looking tired. I persuaded him to go to bed and I would read him a story. He lay down, had a nebuliser but would not go to sleep. After almost an hour, we came back downstairs and re-started painting. The wife came back with a new book. But the boy wanted only to know the name of the book and go back to bed. Didn't want the wife
to come up with him. This time he did sleep.

Didn't want it to ruin his night, so only let him have 45 minutes. He was hard to wake up and only the arrival of auntie stopped him going back to sleep. He did more painting, lurching forward from his chair to get the colours to be mixed. His drooling getting worse as the day wore on.

Despite a last minute tantrum, we got him bathed and the tapes changed. He even washed my face for the first time in ages. He still does his pre-bedtime routine but is so, so weak.

It is so incredibly tiring to look after him. There is always something to do: suctioning, preparing medicines, keeping his right eye lubricated, dealing with calls from someone medical, anticipating in his play and changing the toys every few minutes. It never stops, now that he cannot get anything for himself and his concentration span is reduced. Work was harder than being at home a month or so ago. Home is now infinitely harder work. Exhausting and not necessarily enjoyable.

Davni Chasny (Those were the days)

A lie in for me and the boy. He is up after me. Almost midday before he is up. An unsettled night for him, vomitted and required morphine. The vomit may be tumour-related or constipation. Morphine is great for pain but wreaks havoc on digestion.

He is happy to paint and do cooking in the early afternoon. Oddly hard work as he is immobile in his chair. So, you have to do the running around. He does a bit less and less as the days pass. He is less able to control his 'good' hand, which is now quite shakey. He is happy to have his home schooling person come over for a few hours. But is tired when she leaves. We watch TV for a while before he wants to go to Mummy and Daddy's bed. Mummy reads him a story before he decides to decamp to his bed for a nebuliser and an uncharacteristic nap.

In the meantine we get him laxatives. Anal pessaries - nice. But it does the trick and he is barely awake before his bowels open. Messy but good.

As a treat, we invite auntie over. They paint and she does a picture of a panada for him. But he is inconsolable when she leaves. He wants to go to her house. We mollify him with more cooking and the promise of a new recipe tomorrow.

Then it's bath and bed. After such a short day, who knows what kind of night he will have. And worry for me in that the left side of his mouth seemed a little droopy. A bad sign. He had this when he was diagnosed for the first time. And the tumour was massive at that point. They said then that he only had a couple of weeks to live. A comforting thought to take to bed.

All these things that I've done

First day back at work. Work is easier than looking after the boy. But it is hard for thoughts not to drift back there.

At work I somewhat fitfully go through my emails. Thoughts elsewhere and on the boy. He slept well. Too well. Only woke up at nearly lunchtime. This was another sign of decline that the doctors warned us about. That his waking time would reduce. The wife wanted to wake him up. But gave me an anxious call first, her voice trembling with emotion. Another more emotional call a while later to say he was awake but not wanting to sit up. And finally a further call a further while later to say he was upright in his chair painting. Any wonder it was hard to concentrate at work?

Left work early. The boy was watching TV when I got back. He gestured that he wanted to go upstairs while I got changed. Carried him up, supporting his neck as it lolls a bit like a newborn's. I don't know what the biodynamics of carrying someone with little muscle control is but he is so heavy to carry now. Arms and legs not helping distribute the weight. And his good arm making irregular forearm smashes to my neck.

When I put him on the bed he says he feels sick. Probably the most movement he's had all day coming upstairs. We give him some anti-sickness medicine but it may be really headache nausea. We play on the bed whilst the wife goes to the chemist. A bit tricky to get changed as I can't be sure whether he's suddenly going to lurch off the bed while I do so.

He says he needs his nappy changing. Once done he says that Mummy and Daddy's bed needs changing as a result. I say he didn't wet it. He insists he did and it must be changed. Rolls around the floor in a circle using his 'good' leg for added stroppy emphasis. I give in. Cradling him in my lap we throw the pillows off the bed. Then he mumbles "I know" and wants to go to his room. I carry him there, whereupon he says he wants the chair which he used to sit on whilst his bed was being changed taken into my bedroom. Sweating profusely, I grapple with the boy in one arm and the chair in the other and stagger back to my room. Plonk him on the chair and try to cradle him with one arm whilst stripping the bed with the other. With relief, I readily agree when he says he wants to go back downstairs.

He wants to do more cooking. He likes getting the ingredients ready. Pointing to the recipe and telling me what to bring and then what utensils he will need. We start to make pastry but he keeps spilling the flour as his 'good' hand has lost fine motor control. Eventually, he gives up and we do pretend cooking as this is less messy. He loves banging the masher in the bowl and the noise this makes.

He is good with his bath. But is refusing the bath chair. So I have to hold on to both arms while the wife washes him. And then the wife reads him a story before he goes to sleep.

I cook the wife and I a meal but am worn from two hours of looking after him. It is so physically demanding and mentally draining.

My body is a cage

Having a lie in is a mixed blessing. Gives you time to think about the situation and worry about what new developments have happened since the previous evening. Makes every morning a thing of dread not hope for a new day.

Eventually steeled myself and went downstairs. The boy was watching TV. Completely unable to sit up, he was surrounded by myriad cushions propping him up in all concievable ways and his favourite yellow cushion on his lap. His speech was terrible. The odd syllables and mumbled word. But essentially mute. Absolutely crushing. And then he got restless again and we gave him morphine.

He did rouse himself to do half-hearted cooking while Mummy had a rest. But was hard for both of us. He was frustrated when he made the effort to say something but I didn't understand. And I was frustrated when he would point vaguely at something and then shake his head every time I picked something up where he had pointed. The constant guessing game was wearing us both out. I was losing my temper when he beckoned me over and gave me a hug. Too, too painful.

Hard to know whether what he was has disappeared elbowed out by the cuckoo of the tumour or just harder for him to get out and us to find. The morphine doesn't help. I didn't enjoy the junkie wasted look yesterday when the morphine first kicked in. The vacancy in the eyes as his world seemed to slip out of focus. But what to do? The inability to get himself comfortable as the pain in his head wouldn't leave him alone is no better.

Just when the day seemed irretrievable, he signed he wanted auntie. After a few fruitless calls, we got hold of her and went over.

He seemed cheered by the change of scene. He sat cradled in my lap at her back step and called pitifully quietly for the cat. But he didn't come. So, the boy agreed to make tea. He managed to stay mostly sitting upright with limited support while he helped make the tea. He put teabags in the cup, poured in the milk and stirred the tea. Was good to see as he has been uninterested in doing this at home.

And then the cat came. The boy immediately tried to drag himself to the back step to see. The cat even came close enough for him to use his good arm to stroke it. He was so pleased. It seemed such a small victory on such a bleak day. We could hear the announcements in the nearby park. Reminded me that this time last year we went. We were just out of hospital as he was on chemo then but enjoyed himself so much on a little roundabout. Such a contrast this year.

Cheered by the cat, he wanted to play 'house' upstairs with auntie and Mummy using auntie's duvet. He sat, king of his little palace, receiving visits from chi chi panda and big panda. A little bit of 'happy' time. We even played one round of hide and seek, with me squashing myself with him in the shower whilst we hid from auntie. He used to do this alone but there are too many hard surfaces to let him do it alone now.

After some deliberation, we gave him more morphine before bed time. Helped us all have a better bath time than the last couple of days. But it made him so, so floppy and hard to handle in and out of the bath.

And back to work tomorrow.

Young offender

After a more cheerful morning than of late, a less happy afternoon.

The boy was awake in the night again for some time. A lie in partially compensated. He was more talkative and more engaged once awake than he has been for a couple of days. Happy to come downstairs and discuss his cooking needs. Auntie rang to invite him over. This left him with a dilema - cooking or go to auntie's house. He solved it by deciding to take the ingredients to aunties house. Unfortunately, he is used to being in aunties kitchen without me. But auntie wasn't sure she could cope and so wanted my help. The boy wouldn't allow it. So we ended up chatting and then watching TV.

By lunchtime he looked very tired so we went home with auntie so he could cook lunch for her. Even though he had more paracetamol and ibuprofen after she left he not could settle and was constatntly wriggling to change his position. So much so that we rang symptom care. They said we should give morphine in case the wriggling was pain related. It did the trick but the wife and I were unhappy that his tumour pain has progressed so fast. There's a small chance it is an infection or some such, but that doesn't seem likely.

Once calmer, we did more cooking until bed time. We had hoped to avoid further morphine but bath time and trachy tape change was a real ordeal. He wouldn't cooperate, thrashing around and shouting "no tapes, no tapes". So, after enduring the tape change we gave in and gave him further morphine to settle him for the night.

The current rate of tumour progress is numbing and giving him morphine seems another tragic Rubicon crossed. Who knows what tomorrow holds in store?

Wheels on the bus

The boy had a lie in. But was awake for two hours in the night. So, both things sort of balanced each other out. Although he started the day reasonably cheerful, that soon dissapated.

He needed paracetamol and ibuprofen twice overnight, as his heart rate was going up (but no temperature). Indicative that the pressure in his head from the tumour is hurting him, or at least giving him discomfort. We are going to give it on a regular basis now to see if it improves his moods.

When I take the trachy cuff down, he talks as if he was a less comprehensible Marlon Brando in the Godfather. Balance as bad as yesterday. But a bit more cheerful than yesterday afternoon.

Post brings an appointment for his next MRI and associated clinic appointments. All arrived in the same envelope but little evidence of coordination as clinic is at same time as MRI. All are pretty futile as things stand. So, try to ring oncology outpatients to cancel. Get through
eventually but am not confident that the young man I speak to has cancelled them. He gives the impression that he is being asked to pilot a space shuttle rather than a computerise booking system. I may be being unfair and it is just a reflection of my impatence and the pain that the MRI is now so unnecessary.

The hospice come for a couple of hours. He sems happy to play a jigsaw and wave us off. Allows us to go out for an hour to discuss me returning to work and support for the wife. When we return we find that the jigsaw did not last long and most of his time has been infront of the TV.

We do pretend cooking in the afternoon but he needs a supportive chair to do so. He is listless and perhaps bored. So many of his toys are useless now. So, it's either cooking or painting. Will have to think about what is appropriate for a child in a chair.

After one abortive attempt to go to the shops (we get across the road before he decides to go back), we do eventually go and watch for buses on the way back.

Bathtime is a trial as he refuses to have it, writhing on the floor. We tell him he won't get a second chance and put him to bed. A little while later he changes his mind and wants the bath. Tired of the constant battle we refuse, whereupon he rages round the bed wanting the bath for some time. Intermittently begging please to have the bath. Eventually, it subsides and he accepts a nebuliser and is quickly asleep. Unhappy end to the day.

Find myself more easily upset than before. It is such a strain and I'm not currently coping very well. Everytime a friend or a medical person rings and I have to go through the situation I can barely stop my voice cracking. The wife goes for her regular sessions with a psychologist. I don't anymore, but that's a story for another day.

So Fast So Numb

And now, to keep him safe, he has to be in the car seat. Even V cushions don't provide enough support. The fire is slowy going out. Little flickers every now and then, when he deliberately puts yoghurt on little panda's nose. But less often now.

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 cruely taken away piece by piece.

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 creme 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.

He is wobbly but determined in his ways. Only occassionally frustrated by his useless arm and inability to walk.

Sit down

Sitting here watching the boy as he gets a much needed lie in.

Hard to watch over him without thinking ahead. Makes it an oddly stressful task. Hard to watch him try to turn over with his useless left arm getting in the way. It is still strange to see him with only one hand behind his head rather than two.

On waking, I notice he is now using his good hand to move the paralysed one into position. So he has both hands above his head when his nappy is changed.

When the trachy cuff is down, there isn't much speech left. After achieving sentences only a few weeks ago, he is back to only one or two words at a time. So unfair that after progressing physically and mentally over the last three months he has lost all that progress and more in the last three weeks. We always try to live in the present but it is hard to stop your mind looking backwards to what was or forward to what will be.

Running Wild

Not a good day. Over-tired boy meant a difficult ending to the day. And his speech is deteriorating rapidly.

The boy was awake very, very early. Yawning by 8.00am. Got him downstairs and sat him on a kitchen chair so he could oversee the washing up, since can no longer stand up to do it. Then he decided he wanted to do more cooking. So, we went to the shops. On the way back, he said he wanted to go to the playground. First time I have been there with him since I don't know when.

Was the nicest part of the day. He went on the little slide and the swing. Then wanted to go on the big slide. Was a bit dangerous but I could hardly refuse. I had to carry him up the steps and then run round to the bottom of the slide to get him as he came down. He saw other children running and said he wanted to run. Holding him under both arms, I helped him walk a few steps before it became too much for him. But it was nice to sit on the bench with him and watch the other children play. He saw a girl cycling and said he wanted a bike for his birthday. I agreed. Hardly a promise I will have to fulfill.

We returned to find the hospice there. They looked after him for an hour whilst the wife and I went for a coffee. Had to come back early for the physio. But they were late. Have brought him a bath chair and a mat to lie on when he can't sit up any more. Dispiriting planning. Compounded when I decided I had to ask the hospice to tell me what I need to do with coroner etc when he dies. Didn't tell the wife.

The boy was worn out after the visitors. But still wanted to cook. Tiredness made it a bit of a strain for him and a trial for me. So, we decided not to bother with a bath and let him watch TV instead. Inevitably, at bed time the boy made a fuss notwithstanding how tired he was. I rather lost my temper - hardly a great father - and bathed him with ill grace. Read him a story and gave him a neb. He was asleep within seconds.

So much want our remaining time to be memorable and nice. But it remains, sadly, a slog. Angry at my helplessness.

(Don't fear) the reaper

Still very tired. Having trouble that I am not at work but it isn't a holiday.

The boy went to auntie's house in the morning. Keen to tell me he had seen the cat and given it some milk. But no kitten. And the had played 'house' with auntie's bed. First time he has wanted to do that in weeks.

He was looking very tired on returning, even yawning. Watched TV for an hour but then wanted to do some cooking, despite my efforts to dissuade him. Decided he wanted to make trifle. But was too tired to go to the shops. In the end, he let Mummy go for him.

When she returned, he was very keen to make the trifle. Happily cutting up sponge cake, strawberries and stirring the jelly as it dissolved. He was good at helping Mummy whisk the cream (refused to let her use the electric whisk because of the noise). He helped spoon on the custard and whipped cream. And finally, put on chocolate buttons to decorate. Even though it was nearly bath time when he finished he wanted "more cooking". So, we made a banana and honey smoothie for Mummy.

Was good at bath time. Keen to clean the bath with his toothbrush, for reasons that I failed to understand.

He had a good day, even though I fear that speaking is becoming more difficult. But I am still tired as this is my first real time off for a year. My being home is probably some help to the wife. But it isn't restful for me. Feel that I want a break that involves not doing much and being slothful. But that just isn't possible.

What else is there?

The boy had an early start. Too many visitors meant he was wiped out by the end of the day.

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.

Worried that now I've stopped working, I will be ill. Sore throat and feeling of being completely wiped out. And inexpressably sad.

Grey clouds

The boy had a good sleep but was very lethargic during the day. For the first time he seemed to be aware of things he could no longer do.

On Thursday, I left work early again. The boy was relatively active. But I was very, very weary. I had to make apple and custard pie with him. First time I've made pastry in fifteen years. Turned out pretty well. Bathtime was again a battle field. The boy wanted to do more cooking, so didn't want bath, didn't want tapes changed and didn't want to go to bed.

As I didn't go to work on Friday, I looked after the boy. He had a good night but was yawning after he woke up and didn't really want to get going on the day. Fine by me as without the adrenalin from work to get me going, tiredness and sadness just washed over me.

Granny came over, which encouraged him to get going. But his left side is pretty immobile. He was trying to crawl away from Granny but could barely manage it. And for the first time he looked a mixture of irritated and uncomprehending as to why he couldn't manage it. I guess he hadn't taken notice until now as his various hospitalisations have periodically affected his ability to do things for a while. But most of the time he is good humoured. He even said "I am happy" when we were playing with the animals.

Granny is going away for a few days and predictably got upset when she said goodbye. Again asking me if he would be alright. I wasn't going to pretend it would be.

Left the wife with the boy while I went to buy some jeans. I only had one pair and those were 'distressed' way beyond anything fashionable. The wife as upset when I got back as she seemed only to have just acknowledged that he can't really do anything with his left hand.

After more TV watching he decided he wanted to go to the shops. And for the first time that day looked truely animated, reeling off a list of things to buy. Most of them related to recipes he wanted to cook. He was very good in the shop, telling me what to get next and paying the assistant. He retained his cheerfulness at bathtime, even trying to follow a modified version of his old active routine. Gave me a nice kiss goodnight and waved me off, so Mummy could read him a story.

We get on

Hard, hard day at work. But still managed to get home early for time with the boy.

Work was harder today. And having got yesterday out of the way, I was better able to concentrate. Also, it was non-stop. Went to the local hospital on the way to work to collect anti-agitation medicine. Then after a Board meeting had to go to the Big National Hospital to meet a doctor and go through the boy's final phase pack of medicines - pain management, nausea/vomiting, agitation, seizure and changes in breathing. And then back to work for another meeting before home.

Got home to find the boy in good spirits, after an unusually good night's sleep. He was sitting on the floor cooking with Mummy. Making apple pie. There are limited things he can do now - spooning the flour, brushing egg and pricking the pastry - but he still loves to be cooking. He was so engrossed that he refused to let me get changed out of my suit until the pie was finished.

Once the pie was finished, he was looking through his recipe book for the next thing to cook. He found the recipe he wanted but was missing one of the ingredients. Undaunted, he announced we would all go to the shops to buy it.

When we got back he looked very tired. And even though he wanted to continue cooking, I persuaded him to sit and watch TV for a while. Then he had his bath unhappily. This was accompanied by a litany of "I no like bath. I no like tapes. I no like bed". He was being very difficult and flinging himself around. But order was restored by promising him a new bedtime book. Very bad in any parental manual but we are beyond manuals now.

Although we would have preferred him to go to bed, he made a big fuss and managed to stay awake until the nurse came. He pre-bedtime routine is now severely curtailed. He can't throw cushions. He can't quite pull the cushion from under Mummy's head and he can't turn the night light on. Has to drag himself around using a bottom shuffle. Can't really crawl now, with the left-sided palsy.

When he had his story and me and the wife got back downstairs, the wife got upset about how little he could do of his former nighttime routine. I didn't exacly help by snapping at her as her crying upsets me and depletes my reserves of energy trying to comfort her. Very selfish of me. Her positivity and focus on the now helps get through the days but doesn't always mean that she recognises changes in the boy until they have become inescapable. My downbeat nature sees the changes much earlier but makes me less happy. Hers is probably the better approach.

Fade to grey

Back to work. But left early. Glad I did. The boy was tired and fell asleep soon after my normal time for coming home.

Work was hard. Couldn't concentrate for anything other than short periods and even then not on anything difficult. Told my boss the situation and agreed that I will work Weds and Thurs but then have until the end of the following week off. Glad to be able to finish a mid-afternoon meeting and then go home.

The boy was looking tired and finding even the simplest things an effort. And he's now not always able to hold himself up properly, even when sitting on the floor. He is easily over-balanced. And the left-sided palsy means he can't easily stop himself tipping over.

But he was happy to see me and for us to go upstairs while I got changed out of my suit. I sat him on the bed whilst I did so. I brought him the washing basket to put the clothes in, since he can no longer do it. He was happy to throw the clothes in.

We then went to his room to play. Little panda needed yet another blood test and dressing change. Was nice quiet time together deciding what things needed to go into the tray. Getting stuff from the cupboard. Him telling me what order to do things. Him making me wear gloves - he thought it very amusing that with sweaty hands I struggled for ages to get them on. And once the dressing is on, he said I had to draw a face on it (a nurse once did this last year). Eyes, mouth, ears, chin, nose and hair. He seemed to approve of the results.

We then went downstairs to watch TV as he looked washed out. After half an hour he fell asleep and we put him to bed. And so I sit, typing and watching him. His breathing has become shallow but not yet erratic. The wife is on the phone to find out what, if anthing, we do when the next step in decline happens - his breathing will becone erratic, especially at night. This will happen as the tumour afftects his automatic breathing centre. But we hope he is unlikely to notice it happening. Nevertheless, we've ordered some medicine to help and a pack of palliative medicine which I will collect from the hospital tomorrow.

They don't tell you this at ante-natal classes.

The prayer

Didn't sleep well. Party across the road. Rowdy pub not so far away. And the wife going on late at night about being asked to go to church to pray for the boy as a mother's prayer is strongest.

The boy continues to weaken. Cannot stand up without support. And probably could not manage the little assisted walking he did two days ago.

Went to auntie's house for lunch. He made no attempt to play hide and seek as he can no longer manage the stairs. He was still thrilled to call for the cat (whose name he insists is "cat") and to watch it have some cat milk from the security of the kitchen floor. He even got close enough to stroke it. Even though he got tired very quickly, he still wanted to observe (not help anymore) auntie load the dishwasher and to help make tea and coffee. He can't quite open the tea caddy anymore but he will put the tea bags in the cup. He does push the plunger down on the coffee. And he will stir the drinks and tap the spoon on the rim of the cup.

Granny was there. She was shocked at the extent of the decline over the last two weeks. Plaintively asking me if he will be well enough by Christmas for his present which she bought last week. I said I didn't know, rather than saying the truth.

We took him home by early evening as he was tired and increasingly lethargic. We were worried and keen for him to go to bed. But the night nurse was late and he didn't want to go to bed until she arrived. Luckily, 90 minutes in front of the TV had given him enough strength to cheerfully sit on the stairs to wait for her. Got a nice kiss and cuddle when I left him for Mummy to read him a story.

He is remarkable. He doesn't complain about the things he can no longer do. He only complains about the things he always did. Like being made to leave auntie's before he's good and ready. About having to go for his bath before the end of the programme he's watching. And me not hiding for him to find when I'm supposed to.

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.

How soon is now?

Had to leave the house after putting the boy to bed. Lump in my throat so big it was stopping me speaking. Eyes welling up. Couldn't let the wife see and puncture her relentless positivity.

The boy didn't want to do much in the morning. But auntie coming cheered him up. He told auntie he loved her and gave her a big hug. When she left, amazingly, he walked down the road with her, holding mummy's hand.

He was worn out when he got back. But after a rest we made biscuits. Felt conscious that this might be the last time. Noticed today that he is favouring his right hand. He can still move the left but can't grip things very well. By bedtime he was utterly worn out and floppy. Was just too much for me to bear.

What to do? What will happen? How soon? Will he suffer? How much does he understand?

Dark come soon

We've always tried to make bath time and the bed time a clear routine. The boy likes routine and is offended if we try to vary it. Such an important part of his day but another thing that is becoming more difficult for him to manage.

Preparation is required. First, his bedroom has to be prepared. Syringes, sterile water, feed sets, gloves and paper towels have to be restocked. Trachy tapes have to be prepared and the tape changing paraphenalia assembled. Then, stuff from downstairs has to come upstairs: the changing mat, the spare suction pump, sterilised nebuliser, bottle of milk and toys thrown downstairs in the morning. Then the bathroom prepared with changing mat, suction pump, nappy, nappy sack, wipes, alcowipe, new vest, pyjamas, glove, sticky tape, adhesive remover wipe. And the bath run. If I do it, I seem to spend so much time worrying about getting everthing ready that I forget to run the bath.

Only then does the boy choose who of his toys comes up to the bathroom with him.

After the bath we do trachy tapes. Then I hide and he comes to find me. We go back to his bed room and play throwing cushions, followed by pretend sleeping (Mummy sleeps and after a minute the boy pulls the cushion away from under her head). Then it's a story before bed. But it is harder for him to walk to look around now. And he struggles to properly throw the cushions.

Hard not to be focusing on the negative all the time. The wife is working hard to remain positive. I'm finding it much more difficult, seeing the things he can't do, rather than the things he can do. Must find a way to stop.

Original bedroom rocker

Feels like the end is accelerating towards us. The boy did very little walking and that which he did almost alway required something to support him. Which makes wasting a day that bit more sad.

Another Friday off. Another Friday taking the boy to hospital. Got home from work on Thursday and was barely in the door when the phone rang. I looked after the boy whilst the wife took the call. Knew it wasn't good as she was pacing restlessly up and down. Turned out that his last blood cultures showed that the infection from two weeks ago was still there. So, he'd need more antibiotics. But this time not an injection once a day but an infusion twice a day. Meaning a three hour procedure, plus travel and waiting time twice a day. Call it ten hours a day minimum. For ten days. And it's one he reacts badly to - comes out in a rash.

The wife and the hospital agree that this is not a great option for the boy. The doctors will think about it overnight. I said I'd deal with the boy on Friday, so the wife could have a lie in. The boy had a bit of a lie in too. So we had a slow start to the day. The boy had been watching a DVD the day before where Peppa Pig goes camping and decided that he needed a tent. I said we didn't have one. So he announced that he wanted to buy one and got very upset when I said we would wait and see when Mummy got up. "Want camping" he kept saying.

Was hoping for a break when the carer came round for a few hours and the wife got up. The carer arrived. The wife got up. The hospital rang. They had considered it and the boy needed to go in. I grabbed a sandwich and off we went. The wife stayed to do training with the carer for when the boy goes to nursery. It is only just over two weeks away but the chances of him ever going seem to be receding rapidly.

After a short wait on the ward, the nurses got him weighed and his stats done. After a further wait he got his anti-histamine ahead of the antibiotic. The boy was patient with the delay, once we got the TV working. Then there was a long delay but the boy amused himself by building a tower of bricks with a girl. The nurses couldn't give the antibiotic, as it hadn't been signed off by the doctor and he had disappeared. Eventually, after waiting three hours, the doctor arrived. He said there had been some confusion as to whether the most recent cultures were negative or positive for infection. After another hour's wait, he returned to conclude that nothing should be done while we waited for further cultures to be processed (to avoid unnecessary IV antibiotics being given) and we could go home. In the middle of rush hour. On a Friday.

After more waiting, whilst the boy decided whether he wanted to go home or not, we left. The boy was adamant that he did not want to go by train this time. He wanted to go on a bus. I refused because of the time. After much crossness on both sides we compromised on a taxi. And arrived home just in time to get ready for his bath.

Paint The Silence

The boy has got back into painting after a long break. The wife bought new brushes, paints and paper plates to paint on. Good to see him back at it, even if his hand-eye coordination is not what it was. And he tires much more quickly than he did even a couple of weeks ago. This is making him very reluctant to go outside or walk up the stairs.

It is a curious thing. The tumour is on the brain stem. This means that it affects lower brain function - balance, breathing, vocal cords and his right eye. But his higher brain functions are unaffected. He is learning new words and extending his sentences at the same time as his ability to say them declines.

I thought that I was prepared for the end. Goodness knows, I've spend enought time thinking about it over the last two years. But I'm just not. I am less and less distracted by work. Wanting not to be there. But finding being with the boy harder and so so upsetting.

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.

Bastard 97 made me do it

(that's me in the corner)

The boy slept in but you wouldn't have known it. And in the afternoon, I went out for the first time since May 06. But the boy overshadows everything.

The boy had a decent lie in. But woke up as if he had a short sleep. Cheerful but easily upset. He was still iin bed when Z's mother came round. He was happy for her to come to his bedroom whilst he got dressed. Happy for her to have coffee and then leave. But very, very unhappy when I told him we had to take the train to go to the hospital for his antibiotic. Flung himself on the floor for 20 mins. After trying to cajole him for a while, I gave up an hung up the washing and prepared the buggy. He told me he had been crying when I collected him to leave. All the way to the station it was "no train, no train, I no like trains". But one on the train he was fine. Refused to get out of the buggy in the hospital but once we left it was "no home, no home". So we looked at the big trains in the mainline station for a while before going home.

After doing handover with the wife, I went off to a boat party. My first time out for the year - since May last year. Felt very guilty for doing it. For abandoning the boy. Felt a bit fish out of water when I got there. What was I doing going somewhere I had only met two people once before? And more two years ago at that After an awkward hour, I got to talking to a few people and enjoyed it. But as time went on thought more and more about the boy. Too uncomfortable to be there. So left early.

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.

Bloodline (The Visitor Maximix)

The line infection means that the boy's line is being accessed on a daily basis for his antibiotics. This has reminded him of the process for changing dressings and taking bloods. And that little panda has a line and so he needs to have his bloods taken.

I got home last night to be hauled upstairs by the boy saying "bung, bung". I had no idea what was going on after a stupefying day. He took me into his room, dragged little panda off the bed and made me watch his preparations. He emptied out the tray that the community nurses use and started to get everything together: syringes, alcowipes, dressing, hepsal, saline, adhesive remover, gloves, cleanser, sterile wipes and line port (which everyone calls "bungs"). When he was satisfied that he had everything, I had to put the gloves on and start preparations. I had to clean the tray but then he took over. He put everything neatly in the tray, cleaned the bung, took bloods, put the blood in the bottle, shook the bottle, took off the old dressing, put on the new bung and finally replace the dressing. All the while saying "good boy" in a soothing voice to little panda, like the nurses do to him.

I found it a bit of a sobering experience to see him do that. He used to play with hospital equipment in preference to his normal toys. But this year he had been doing it less and less. It is easier when he plays with cars and does cooking to pretend to be normal. This sort of play is just another reminder that we aren't normal.

Everyone thinks he looks daft

It's a bizarre life where illness is the preferable outcome.

Although the boy is quite unwell, we are pleased that he has a line infection. If the antibiotics don't deal with the infection, it might mean that he will need an operation to remove the line. But the alternative was that the tumour growth was meaning he couldn't contol his temperature. Another Hobson's choice.

Felt very tired, despite a lie in. And in low spirits. At how tired I am and so, so fearful about the boy. I look at his half-paralysed face, wondering if it's got worse over recent weeks - people staring on the train yesterday bother me. Flicking through old photos to try to work out if it is real or unwarranted. Just not sure.

One of those rare occasions when I wanted to talk to the wife about the sadness and fear of the future. But I can't. Thoughts too black for her to bear. Even recording them isn't enough tonight.

No Train To Stockholm

Tough day. Tiring day.

The boy was up very early. Not enough sleep and clearly being unwell made a difficult morning. Had to bundle him out as soon as possible to to to the hospital for another IV antibiotic. The boy wasn't happy about going out, wasn't happy about going on the train and wasn't happy about going to hospital. Nor was I.

After the IV and some paracetamol he cheered up. But when we got home I was exhausted. After the wife got up, I went to bed for an hour. Unheard of for me.

Didn't feel any better for the sleep but it must have helped. Then in the afternoon we had to do the hospital trip all over again. Taxi we ordered didn't arrive. So, we had to take the tube again. Hard work lugging him and the laden buggy up and down station stairs. But the boy enjoyed the trip and on the way home was happy to sit at the top of the stairs watching trains coming in and going out.

Not a good couple of days for me. Not exactly restful or fun. And not good for the boy. He's still pretty unwell, with a heart rate that's too high, even if his breathing is still ok and not needing oxygen. More hoping that he has a good night and doesn't try to overdo things tomorrow.

Familiar ground

Spoke too soon. Was a day off but not the first without a trip to the hospital.

The boy was cranky in the morning, in the way that he does when he's not well. The wife had arranged for the hospice to look after the boy for 3 hours, so we could have some time together.

Nice idea but didn't quite work out. Spent the first hour looking after the boy, trying to work out if we should take him to the hospital and discussing him with the consultant. The hospice did shoo me and the wife out briefly for a coffee - a strange experience to be outside with her without the boy and him not underoing an operation. But when we go back we agreed with the hospital that he should go in for a check up and IV antibiotic.

While we waited for his appointment, we did his trachy change, as the monthly change was due. He was very upset. "No tapes, no tapes". He was kicking and screaming so much so I had to hold him down pretty forcefully. Not a pleasant experience, though he hardly noticed the trachy itself being changed. The wife's hands were shaking very badly afterwards.

I took the boy to the hospital on the train. He was crying all the way there in the buggy. "No train, no train". "No doctor, no doctor". Got him into a cubicle at the hospital and had the inevitable wait for a doctor. I sat him on my lap to watch diggers on the building site opposite and after 10 minutes or so he forgot he didn't want to be there. This was reinforced when he remembered that if he got into bed he could watch kids TV. By the time the doctor had been and he'd had his IV antibiotic, the boy was rather enjoying himself and it was "no home, no home". I let him have his way as it was rush hour. But eventually, there were programmes he doesn't like and he agreed to leave.

After we got home, we got a call from the hospital to say that he does have an infection but they don't yet know whether the antibiotic he is on is the right one. We will find out later. In the meantime, we have to go back to the hospital in the morning and evening on Saturday for further IVs and then once a day thereafter.

And, of course, after his bath he insisted we change his trachy tapes, despite me telling him they didn't need to be done. Routine is routine for the boy. Try to vary it at your peril.

So much for my day off without going to hospital.

Look at the sky

Announcement over, I'm having a day off. First day off since September that doesn't involve a planned trip to hospital.

The announcement happened on Tuesday. Some initial media coverage but soon bumped down the 'news agenda' by the foot and mouth outbreak. Most people in the organisation terribly excited. Difficult to share their enthusiasm, being so tired. And then thinking about all the things to do next. They all went out to celebrate and I went home to the boy. Means I lack those shared experiences that can help bond an organisation.

The boy is still very fragile. He came off oxygen after a couple of nights but his temperature is not under control. Mostly ok in the mornings but a tendency later on to rise from about normal to fever levels in less than an hour. So, so worried that the tumour is stopping him controlling his temperature. But more blood samples taken to check for infections. Have to wait and see what happens when his antibiotic course finishes today. If he gets worse it will mean IV antibiotics. And depending what antibiotic they give him, either a daily visit or being an in-patient again.

In the evening, I watched the sky while the boy stood on a chair to look over the fence and play with next door's boy. They were watering the plants by the fence. The boy was laughing excitedly, thrilled by being able to play with another child. And I was required to repeatedly fill the boy's watering can so the game could continue. It only stopped when they were both called off for their baths.

Having A Moment

We seem to have made it through a bad night. Touch wood. The boy's still at home.

Last night was pretty dicey. But the antibiotics and some rest seem to have helped the boy. Still needed plenty of oxygen but managable amounts and his temperature is currently under control. Given the picture above, it makes the last post seem somewhat melodramatic. It wasn't. The consultant rang back this morning and she was expecting us to be in hospital. The boy's fragility means that he can decline so fast and with chest infections take so long to recover. But being a child he can sometimes bounceback equally fast.

Didn't sleep too well. Very hot and the expectation of going to hospital. Kept it very low key for the boy during the day. He seemed generally much better. If anything a bit too active in the evening, when I was trying to calm him down. Even wanted to water the plants. But upset when he got water on himself. Had to rush inside to dry his hands whenever it happened.

Hardly a relaxing weekend on which to face a big week at work. After two and a half years, announcement day is finally coming on Tuesday. But, frankly, who cares? Not me.