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.

Trouble every day

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

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

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

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

You wonder

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

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

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

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

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

Staring at the sun

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

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

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

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

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

Must I paint you a picture?

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

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

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

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

How low

I don't know how far we are now from the end but it can't be far. It is so much worse a process than even my worst thoughts.

It is only a month since his decline showed itself. But in that time he has stopped walking, stopped being able to sit up, stopped being able to use his left arm, stopped being able to support his head and now is losing the last control of his right arm. It is incredibly painful to watch. As a parent you want to be able to help. And we are helpless. Impotent rage sweeps over me. But the boy is accepting of all this. He doesn't complain. He never says he's in pain - not yet anyway. He just tries to get on with his life.

For him, things go on as normal. Just what is normal slips away each day. He still wants to paint and cook but it is increasingly beyond him. His routines on waking and bedtime continue as they always were. Just there's less he can do and more we have to do.

In high wind one of our windows broke. Seemed like the final straw for me and the wife. She laughed hysterically and then cried. The boy put out his arm to comfort her by giving her a hug. How does he do it?

Davni Chasny (Those were the days)

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

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

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

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

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

All these things that I've done

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

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

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

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

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

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

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

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

My body is a cage

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

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

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

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

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

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

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

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

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

And back to work tomorrow.

Young offender

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

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

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

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

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

Wheels on the bus

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

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

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

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

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

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

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

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

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

Sit down

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

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

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

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

We get on

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

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

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

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

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

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

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

Fade to grey

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

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

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

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

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

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

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

The prayer

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

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

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

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

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

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

Sunny afternoon

Sunday is my lie in day. Struggled to sleep in. Tired but anxiety dreams dominated.

When I got up, I had to read the paper to stop thinking about the boy and the end. Too upsetting if I didn't.

The boy went to the market. He seemed pleased with his purchases. Wouldn't rest when he got back. Keen to do more cooking. To remain active.

It was a sunny day, so we spent some more time in the garden in the late afternoon. One of us holding his hand as he tottered round the garden doing watering. Have to make sure his watering can is not too heavy for him.

He is the most cheerful of the three of us. His lack of use of his left hand is more pronounced today. Everything with his right hand. When he went to bed, we have had to restrict his routine as he can't manage hide and seek any more. He was very tired and after a book was happy to have a nebuliser to go to sleep. But did struggle upright to give me a kiss and a hug when I left the room. And blew me kisses.

How soon is now?

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

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

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

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

Dark come soon

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

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

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

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

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