I see you baby

"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

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

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

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

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

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

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

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

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

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

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

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!!!!

Time has taken its toll on you

Time is so carefully allocated during the week.

Getting ready for work - 2.5hrs
Work - 47.5hrs
Travel time - 6hrs
Looking after the boy - 7.5hrs
Boy's bathtime with wife - 2.5hrs
Boy's bedtime story - 2.5hrs
Cooking and tidying - 5hrs
Time with the wife - 7.5hrs
Sleep - 37.5hrs
Alone time - 2.5hrs

I'm not sure what this proves, except that it's a highly regimented life. Not exactly flexible and leaves little time to take stock of it all.

In the waiting line

We are still waiting for an opinion from the US on what, if anything, can be done for the boy.

It's very frustrating. We met the consultant at the Big National Hospital in early April to discuss options and they said they would get a second opinion from the US. But they sent it surface mail so it hasn't yet arrived. Last week they said they'd send it again by courier. But chasing the US we find they still haven't received it. Pursuing the Big National Hospital again we find the courier was only sent today.

Too much time is passing and the boy's chances dissapate while we wait.

To add to the feeling of gloom, the nursery we wanted the boy to go to have rejected him on appeal. He isn't deaf enough for them. We are getting no help and he may have nowhere to go come September. But there is the nagging feeling that it all might be immaterial anyway.

Ill behaviour

Coming home from work contains the seeds of its own mini drama.

Got home to find the boy and the wife sitting on the stairs, waiting for me. How sweet. How pater familias. How wrong. It was convenient, as the wife was taking his temperature and needed him still for three minutes

His temperature was ok. But the boy signed that he had been sick, upstairs and downstairs. The wife said one was before he was dressed in the morning (upstairs) and one when he had some milk in the afternoon (downstairs). No idea why. He's not on chemo at present, hence taking his temperature.

Grab a Lemsip and take over childcare. Evenings are usually like that. If the wife hasn't had support during the day, my return is cue for her to flee from the boy to do all those things that she can't do during the day. But makes coming some something to be braced for.

Nevertheless, the boy is in a good mood. We build his Thomas train track and he gets two trains to chase each other. We wave as they go round the track. Meanwhile I get a bit more milk and his evening medicines down him. The gastro means he hardly pays attention as I do so.

After a few minutes waving at Thomas he looks serious. I ask if he feels sick and get a bowl. He says no and indignantly waves the bowl away. I turn to get some suction for the trachy and he vomits the milk all over his trousers, the floor and the train track. He is very upset and waving his hands frantically. I have one of those moments where you don't know what to do first. Grab a tissue to mop him a bit before he waves vomit into his eye or something. He vomits a bit more over my hand. I try to frantically wipe my hand, him, the floor and get the suction ready. Don't quite manage any successfully which makes him want to back away from the mess, which smears more of the vomit over a wider area of the floor.

Eventually, he and I calm down and I clean him up and change his clothes. Within a minute or so of being clean and redressed, he is playing with Thomas as if nothing had happened.

Still no idea why. Always the fear that it is the start of an infection which could get on his chest and put him in hospital. Or the fear that it is the result of the tumour growing - vomiting is a classic sign. A little bit more of my reserves crumble.

Sunday Boy

Visit from autie M and Oma. The boy was rather uncertain about Oma but remembered auntie M's car - up and down he said. A sports car with a retractable roof. He was very happy to make it go up and down until auntie started to get worried about the battery.

Shopper's Paradise

Woke up this morning. Dust devils scouring my throat. Grit in my eye. My woman done left me to the childcare. Only thing wrong was that ma dawg didn't die. Yes, I have the man-cold blues.

Actually, it isn't that funny. Makes the Bank Holiday weekend a bit more of a trial doing anything, especially looking after the boy when you're knackered already. But Saturday is my main care day.

Big coughs from the boy when I deflate his trachy cuff. Do suctioning as normal but secretions come up bloody. Certainly makes me pay attention. Next few suctions are blood-stained. But thereafter nothing although the boy is quieter and hoarser than normal for the rest of the day.

Eventually, we go out to the shops - to get cake for me he says. But once in the road he pulls a fast one and hares off towards auntie's. I grab him back and he sulks when I say no. Takes a while but he eventually relents and we go shopping.




He has a quiet afternoon but we have a lovely late afternoon trip to the park. He has a great time doing synchronised swinging with Mummy and then playing ball with a little girl. He was very uncertain at first since other kids are a rarity but then really got into it.

The School Song

Have lots to do at work. But have spent much of the last two days trying to sort out schooling for the boy. Perhaps it's all pointless anyway after the latest meeting with the consultants.

We have been trying to get the local Special Educational Needs Assessment Service to do what they're supposed to do - an assessment. Their current position is that they won't until he's in a school. They've offered the local special school but no mainstream school - we have to get a place in those ourselves. We've seen three local schools and think one is appropriate. But that school says that he doesn't meet the special needs criteria. So, I've spent some considerable time in the last two days writing a long letter setting out why he should go to a particular local school. The local school aren't exactly jumping over themselves to have him so I can't say I'm very hopeful about the outcome.

Also, saw the oncology consultant about the next steps for the boy. Not a helpful picture. Gamma knife readiotherapy is not recommended, as it will only treat the tumour not the tumour plus the area from which tumour was removed, so giving significant risk of recurrance. The hospital had asked for a second opinion from America but they haven't even got the papers yet (sent surface mail), let alone given an opinion. Chemo alternatives look experimental at best and as if they would hospitalise him for months on end or they are just drug trial treatments with no curative intent. In the meantime, the boy's off all treatment and we just wait until we get something back from America.

A difficult waiting game.