ependyparent

Final Straw (Move On Mix)

2007-10-13T01:38:00.000-07:00

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.

If you want to donate, please give here, here, here or here.

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

Last Tribute

2007-10-12T08:16:00.001-07:00

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

2007-10-11T11:58:00.001-07:00

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

2007-10-10T23:45:00.001-07:00

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

2007-10-08T23:58:00.001-07:00

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

2007-10-07T01:47:00.001-07:00

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

2007-10-05T23:27:00.001-07:00

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

2007-10-04T23:21:00.001-07:00

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

2007-10-03T23:48:00.001-07:00

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

2007-10-02T23:55:00.001-07:00

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

2007-09-30T01:51:00.001-07:00

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

2007-09-29T19:50:00.001-07:00

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

2007-09-28T23:52:00.001-07:00

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

2007-09-27T14:45:00.001-07:00

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

2007-09-26T23:36:00.001-07:00

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

2007-09-24T23:55:00.001-07:00

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

2007-09-23T15:06:00.001-07:00

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

2007-09-22T16:03:00.001-07:00

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

2007-09-20T13:43:00.001-07:00

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

2007-09-19T22:57:00.001-07:00

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

2007-09-18T23:29:00.001-07:00

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?

2007-09-17T23:27:00.001-07:00

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

2007-09-16T22:42:00.001-07:00

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

2007-09-15T16:21:00.001-07:00

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

2007-09-14T23:49:00.001-07:00

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)

2007-09-12T23:05:00.001-07:00

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

2007-09-11T00:15:00.001-07:00

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

2007-09-09T16:31:00.001-07:00

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

2007-09-08T13:42:00.001-07:00

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

2007-09-07T13:11:00.001-07:00

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

2007-09-06T23:40:00.000-07:00

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

2007-09-05T12:59:00.001-07:00

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

2007-09-04T13:55:00.001-07:00

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

2007-09-04T06:47:00.001-07:00

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

2007-09-03T23:21:00.001-07:00

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

2007-09-02T13:22:00.001-07:00

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?

2007-09-01T16:29:00.001-07:00

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

2007-09-01T03:46:00.001-07:00

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

2007-08-29T23:27:00.000-07:00

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

2007-08-28T22:25:00.001-07:00

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

2007-08-27T23:31:00.001-07:00

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

2007-08-26T13:14:00.001-07:00

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?

2007-08-25T15:12:00.001-07:00

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

2007-08-25T01:21:00.001-07:00

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

2007-08-25T00:00:00.001-07:00

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

2007-08-21T23:35:00.001-07:00

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?

2007-08-20T23:14:00.001-07:00

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

2007-08-18T14:24:00.001-07:00

(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

2007-08-17T04:32:00.001-07:00

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)

2007-08-15T01:48:00.000-07:00

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

2007-08-12T13:26:00.001-07:00

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

2007-08-11T15:58:00.001-07:00

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

2007-08-10T23:52:00.001-07:00

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

2007-08-10T00:40:00.001-07:00

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

2007-08-05T13:34:00.001-07:00

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.

Hot in herre

2007-08-04T11:50:00.001-07:00

Just when you think your worries are receding, they sneak up and whack you across the back of the head. That'll teach you to try to relax.

The boy managed the night just about ok but woke up early. Looked very tired but after coming downstairs cheered up and was acting broadly ok. Gave him some paracetamol just before luchtime and went off to auntie's house. Had a fairly quiet time there but he enjoyed himself very much. Came home and left the boy with the wife, while I had a sandwich and a sit down.

Later, he and I made preparations to cook but he was feeling very warm. Took his temperature and it was ok. Then he started to act lethargic. Bad sign. Then he lay on the floor. Very bad sign. He wouldn't go to bed so we watched TV. Took his temperature again. It had gone up, so gave him paracetamol. Eventually, even the TV was too much and he agreed to go to bed with me. But he fell asleep before I had to get in with him. He needed a fair amount of oxygen to keep his saturations up. And his heart was racing, even though he was asleep. Took his temperature again. It had gone up. The wife rang the hospital and after talking to a consultant, we got an on call GP out. Standard antibiotic prescribed. Let's hope it's enough.

Feel unreasonably emotional. Partly, it's tiredness which is worse on a Saturday. Partly, it's a fear that his requirement for paracetamol over the last couple of weeks is tumour related. And partly, it is guilt for not having spent enough time at home because of work. Don't want the boy back in hospital.

The Sidewinder Sleeps Tonight

2007-08-03T23:38:00.001-07:00

Weary few days. Hard to know where to start.

Good things: got home on Wednesday to be told by the boy that two men had come and "old bed gone". He had been too big for his hospital cot for some time. We would have bought him a new bed ourselves but the Community Nurses said he needed a special one. It had finally arrived. It was sweet to see how excited the boy was with it. Happily telling me how big it was and demonstrating the fact by flinging himself from one end to the other, before showing me how to bounce up and down on it.

Less good: the boy has still been having fluctuating temperatures and high heart rate. All controllable by paracetamol or ibuprofen. But worrying nonetheless, since it seems to have been going on for a couple of weeks. And it was time for his rescheduled gastrostomy operation, postponed two weeks ago because he wasn't well.

Usual restriction on his overnight feed and early start. Always tricky as there is such a lot of his stuff that can't be pre-packed. Nevertheless, got to the hospital by 7.30am. The boy was happy enough to have the car journey and to play in the ward playroom for a couple of hours. But then started to get bored and restless. Wanting to go home. Just as we thought he was going to get bumped onto the afternoon list they called him down.

I had wondered how they get the tube out and the new one in but hadn't wanted to ask. The wife did. Unpleasant. The ENT surgeon cheerfully said "it's easy". You unscrew the end. You pull out the jejunostomy tube and chuck it in the bin. Then you feed a guide wire down the tube and wiggle it back out through the mouth. Stick a little balloon on the end of the tube then pull the whole thing out of the mouth. And the new one goes back the same way.

The wife had to go to another hospital for a different appointment about the boy. So, I looked after him following the operation. Inevitably, when he woke up there were innumerable questions on the "where's Mummy?" variant. He was cheerful, despite a small bleed from the trachy. But, understandably was rather hoarse. Then, the "go home" pleading until they were ready to let us go home when it became "no home".

Got the boy home to bed ok. But his temperature went up significantly, as did his breathing and heart rates. And he needed a fair bit of oxygen. Bit dicey for a while. Have to hope we can get him to rest enough to overcome whatever is the matter now without going to hospital. Just so wearying to go from one worry to the next with precious few nice bits inbetween.

The Garden of Blighty

2007-07-31T23:30:00.001-07:00

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

2007-07-29T23:32:00.000-07:00

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

2007-07-29T07:10:00.001-07:00

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

2007-07-27T23:47:00.001-07:00

"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

2007-07-25T07:25:00.000-07:00

"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

2007-07-23T23:34:00.001-07:00

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

2007-07-22T05:38:00.001-07:00

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

2007-07-20T02:54:00.000-07:00

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

2007-07-18T23:26:00.001-07:00

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

2007-07-17T00:15:00.001-07:00

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

2007-07-15T04:39:00.001-07:00

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

2007-07-14T16:23:00.001-07:00

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

2007-07-12T09:52:00.001-07:00

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

2007-07-11T12:59:00.001-07:00

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

2007-07-08T13:20:00.001-07:00

"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

2007-07-04T05:43:00.000-07:00

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

2007-07-02T03:36:00.001-07:00

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)

2007-07-01T00:42:00.001-07:00

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.

Puppet on a string

2007-06-26T00:29:00.001-07:00

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

We had the meeting to plan for dealing with illness when he's well, when he's in decline and at the end.

There were so many people there they had to use a seminar room:

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

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

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

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

Trainspotting

2007-06-24T23:18:00.001-07:00

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

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

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

Monday Monday

2007-06-22T00:57:00.000-07:00

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

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

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

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

Father and son

2007-06-17T13:14:00.001-07:00

Fathers' Day.

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

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

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

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

It's not unusual

2007-06-17T03:59:00.001-07:00

Potties, trains and antibiotics.

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

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

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

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

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

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

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

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

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

I see a different you

2007-06-14T00:47:00.000-07:00

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

Love story

2007-06-12T23:14:00.001-07:00

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

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

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

Shopper's Paradise

2007-06-10T23:17:00.001-07:00

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

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

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

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

Heart it races

2007-06-08T23:35:00.001-07:00

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

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

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

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

Like a child

2007-06-06T15:05:00.001-07:00

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

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

Wife a bit tearful. Me shaky and fearful.

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

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

Tell me now

2007-06-05T23:45:00.001-07:00

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

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

Get the bearings

2007-06-04T07:27:00.001-07:00

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

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

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

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

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

Living in a box

2007-06-03T13:28:00.001-07:00

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

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

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

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

I see you baby

2007-05-30T22:43:00.001-07:00

"Off to hide" and "You ain't seen me. Right."

The boy's favourite game at the moment is hide and seek.

Best played upstairs at aunties. And you get to count to ten before the game starts. He's not very good at being patient enough to count to ten when he's the one doing the looking. Tends to be "One. Two. Four. Ten". He's even worse at hiding. Wearing sunglasses while sitting on the toilet is one idea of his. A better one is hiding in the shower. But when the person looking for him says "Where is the boy? I can't find him anywhere." He always says "yeah". Loudly.

Meanwhile, some extra news from the USA from a very helpful doctor in Boston. But a bit of a worry that he has had a bug of some sort for a few days. Had minor temperatures occasionally over the last few days. Hoped he would ride it out. But a more significant temperature last night. Hope he has enough immunity to fight it - it is not yet back to normal after his chemo.

Love Vigilantes

2007-05-29T00:28:00.000-07:00

The weekend's over. Back at work. But we still haven't made a decision about what to do for the boy.

We did discuss the pros and cons of the options last night and the night before. But we are still in two minds. The chemo protocol open to us doesn't offer a cure. Might shrink the tumour a bit but equally might give him leukaemia. But so hard to decide that we've done all we can do and so we should do nothing.

A harder decision than I imagined. After all, it's only a simple A or B decision; do nothing or do the protocol. So, we are going to see if the local hospital have time to see us to facilitate our decision (they helped out when we were trying to decide about surgery in the autumn). And the wife wants to get extra information from two doctors in the USA. Though, this feels like a delaying tactic.

The way it is with dreams

2007-05-27T04:15:00.001-07:00

Really in two minds about the way forward for the boy - treatment or no treatment? Meanwhile, life goes on.

Uncertainty about what to do not helped by being absolutely exhausted. Hard week, hard news, hard times.

Funny how work and non-work can go in sync. Just as all the bad news about the boy has hit, work has become harder than ever. For the first time in a very long while, I have been waking up tired. Unlike the wife, I have always been a morning person. The time when I am most alert and clearest in my own mind. This last week I've felt groggy on waking and needing an hour and a very large coffee to come to.

The boy is ok. He hadn't quite had enough sleep, so he veered between cheeriness and unexpected stroppiness. He was very sweet when auntie rang to invite us over, throwing his arms in the air and cheering then running off to get ready. The next minute he was in floods of tears, throwing himself in the floor. All because I wanted him to wear new shoes. Nothing too awful for a child of three but I could just have done without it.

Stayed out for a while to give the wife some time to rest and review the material about the chemo regimes to allow us to decide what to do next. Returned weary but just about holding it together. Met with a barrage of chemo statistics and facts when I got the boy inside and was tring to take his shoes off and put the trike away. Eventually, had to beg her to stop. She was on such a roll that I ended up almost pleading with her before she got the message.

By the evening I was hanging on and desperately counting down the time until he went to bed. He did his favourite jigsaw over and over again. I didn't mind. Was almost a pleasure to be left alone to cook dinner. Tried to make it special as it was our wedding anniversay. Had bought champagne and presents. But not in much of a mood to enjoy it. Went to bed as soon as I was able. So hard to see beyond the daily grind.

King of the Road

2007-05-24T23:03:00.001-07:00

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

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

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

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

Nowhere to run

2007-05-23T13:27:00.000-07:00

Looks like we've reached the beginning of the end. The meeting with the Big National Hospital did not give us good news.

Saw the consultant oncologist with the wife today. Felt sick beforehand in anticipation of bad news. Luckily, we didn't have to wait long for the appointment.

The news from the US is that they do not recommend re-radiation. Added to the advice from the other hospital that they don't recommend gamma knife radiotherapy means that the consultant advises we are no longer looking at any options intended to be curative. Sickening but unsurprising news.

Options now are:

- do nothing, on the basis that this maximises our chances of having him healthy and out of hospital for most of whatever time he has left

- wait for the tumour to grow and put him on an experimental chemo protocol which might extend his life but reduce the quality of that life and mean some period in hospital

- try an experimental chemo protocol now for six months. Can be given at home but means he is on chemo for the whole period with no breaks. And have the risk (certainty?) that reduced immunity will mean spending part of the time in hospital with one or more chest infections.

No good options. Not sure what to do - both of us oddly unemotional and flat. Will take the weekend to think about it. Problem is that he can't be left with family or friends because of the trachy. Means we are restricted to the evenings to discuss it. Never a good thing to try to discuss such difficult things after a tiring day and so close to bedtime.

Hard to go to work, go to the hospital for the meeting, go straight back to work to a meeting with people asking for decisions on this and that.

Mother

2007-05-22T23:13:00.001-07:00

Another painting. This time Mummy. An altogether more cheerful picture. Yellow hair, pink top and pale blue trousers.

And we have heard from the US hospital that they have sent their second opinion to the UK. We have an appointment tomorrow. Given the short notice, we weren't sure we'd be able to get nursing cover to allow us both to go (we don't want to take him). But the hospice have helped us out. Made for a brittle evening last night. Both of us focusing on the practical issues for the appointment, rather than the emotional implications.

Lift me up

2007-05-21T00:57:00.000-07:00

Shouldn't post late at night at the end of a long week. Yesterday was, thankfully, a better day. Personal clouds seem to have lifted a bit. It was no more exciting than the previous day but I enjoyed time with the boy a bit more. And, things are even better with the wife. At least we're both trying to make things work for us, not just for cares for the boy.

It's always hard to assess how he's doing compared to other children, given our lack of a benchmark. But he's now starting to try to string a few more words together at the same time, rather than single words combined with gestures. Having got his numbers 1-12 and tiring of constant counting, he's moving on to letters. He found an old card index box and is taking the cards out and wanting to know what the letters are. Unsurprisingly, he started with "m" and "l" and then "d". But he's now moving onto other letters, preferring to get letters for people than things. Inevitably, the next letter was "a" for auntie.

Black waves/bad vibrations

2007-05-20T04:51:00.001-07:00

I haven't worked out how to put up a picture of me in the "about me" bit of the site. But the boy did it for me yesterday.

First time he has attempted to do representational painting. He has half-tried previously. But this time he kept looking at me while he painted and I sat hunched and scowling, nursing a cup of coffee. Blue top, black jeans and red hands. Not a very cheery image.

Nothing at all

2007-05-19T16:35:00.001-07:00

My weekend day with the boy. It was fairly quiet and uneventful. I should be glad really. But I was bored.

Time with the boy is either stressful beyond belief - he's in hospital or about to be. Or it's so dull - we are at home but he's not well enough to do anything much and so we stay in a tight orbit of a quarter of a mile from the house. I know I've said this before (and that I am entirely dislikeable for saying it - but hey I detest me too) but it doesn't make it feel any less real. And I know I get to go to work in the week, so it's not as if I am as limited as the wife who looks after him almost six days a week. But she mostly enjoys time with the boy. He's very sweet but it is still boring.

All of this was triggered off by my mother who came over on Friday. Well meaning but sometimes thoughtless, she asked what we were doing at the weekend? Nothing I said. You must be doing something she said. No I said. We didn't do anything last weekend. We aren't doing anything this weekend. And if he stays out of hospital, we won't do anything next weekend. I could have screamed all this at her. But it's not her fault, so I tried to restrain my temper.

There's never any simple stuff with the boy. He was happy and broadly good tempered with peach fuzzy hair. Good? Well, yes and no. No, because it is smack-in-the-face evidence that he's not on any treatment. Chemo makes him cranky and lose his hair. Who knows what is happening with the tumour now? When will we get the second opinion from the US? By what percentage do his chances decline each day? How much time is left? And, I'm wasting my time left with the boy with all this agonising. Pathetic really.

This corrosion

2007-05-17T02:13:00.000-07:00

Meeting with Big National Hospital on treatment options for the boy cancelled. No idea when it might take place.

There has been no feedback from the US hospital on their second opnion. It was expected last night but nothing was received. We were supposed to see the Big National Hospital to discuss the second opinion but only heard half an hour before the meeting was to have taken place that it was cancelled. The wife and I on tenderhooks about the meeting and have to continue to play the waiting game while the boy is still having no treatment at present.

Anxieties not helped by long and difficult discussion late last night with the wife about the declining state of our relationship. Things I've been trying to tell her since the autumn seem finally to have hit home. Not really the time for it. Not sure what to do about it, given I had resigned myself to our present arrangements.

Do Re Me So Far So Good

2007-05-14T23:02:00.001-07:00

A bit of good news for a change.

At long last the boy's details have reached the US hospital. Seems a bit ridiculous to be celebrating such a simple thing. But that's what it feels like when it has taken almost six weeks to achieve (no matter how grateful we are that they were prepared to do it in the first place).

And the boy has been offered a place at a local nursery. It's not the one to which we think he's best suited. But it is fairly local and quite a good school. We are mindful that he's a pretty major undertaking for any nursery and they could have given themselves a quiet life by turning him away. So, we will grab the place with both hands. I only hope he will be able to take it up.

In the meantime, last night the boy decided that the sheets on our bed were dirty and needed changing. He started well, helping to take the pillowcases off and put them in the washing. Then, the best bit. Playing 'house' with the sheet. Me and him hiding under the sheet from Mummy and playing with his letters box. But he got bored before the bed was finished. That is him on the half-finished bed writing notes for Mummy (he has seen her write up his daily medical care notes). He is worringly fond of green ink.

Postales

2007-05-13T14:01:00.001-07:00

Cup your hand in a fist with the arm straight up at the elbow in front of you. Your arm is the spinal column. Your fist the brain stem. Now, take your fist and cup it round your other fist. That's what happened to the boy.

I remember seeing that first brain scan like a freeze frame black and white photograph. The tumour and fluid sac like a small white orange. The brain stem squashed in a grey crescent to one side of the skull. That he was functioning at all was a surprise. That he hadn't had had a seizure amazing. So said the doctors.

I remember thinking "He's going to die. No child can come back from that and survive." There's a website called post a secret. Mine is that I can't look at him without thinking he's going to die. For the wife's sake I never say that to her, since hope keeps her going. It remains my dirty, guilty secret.

It's constantly going through my head at the moment whilst I wait with impotent, mounting frustration for the boy's details to get to the US hospital. They still hadn't arrived on Friday afternoon. Makes me want to rush off the Big National Hospital to shout and scream at the administrative staff that this delay is putting the boy's life in danger. But I won't. I'll ring and ask politely that they check with the courier company the package's whereabouts. Ahhhhhhh!!!!