Final Straw (Move On Mix)

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

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

Last Tribute

Address from the boy's funeral:

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

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

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

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

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

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

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

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

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

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

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

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

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

Cakewalking

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

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

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

More than a feeling

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

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

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

Letting go

Have to start letting go.

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

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

Gone

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

Daydreaming

Time continues to move on with an unreal quality.

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

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

Time after time

Time moves inexorably on.

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

Ring of Fire

Went and saw the crematoria. Sorted the funeral.

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

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

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

Further down the road

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

SUNDAY

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

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

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

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

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

MONDAY

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

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

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

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

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

TUESDAY

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

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

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

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

Baby, 1 4o7e 1ou

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

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

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

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

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

Four to the floor

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

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

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

Second guessing

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

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

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

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

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

I'm so afraid of what tomorrow brings.

Miss you nights

I miss the boy running unsteadily to the door when I come home.

I miss him pulling out the wash basket for my work clothes.

I miss a hug.

I miss his lop-sided smile.

I miss the chatter.

Most of all, I miss him saying "Dada".

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

How my heart behaves

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

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

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

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

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

Every breath you take

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

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

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

Pale blue eyes

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

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

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

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

You are the everything

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

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

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

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

Trouble every day

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

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

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

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

You wonder

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

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

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

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

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