Can't get you out of my head

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.

Cakewalking

"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

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

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.