‘Let’s have a look at you, shall we?’ Mr Peters examines Kieron’s eyes, his skin. ‘We’ve got the results of the bloods and the latest scan.’ Kieron is monitored every three to six months. ‘There is some change but overall…’ He trails off as a breathless, red-cheeked Aidan rockets through the door, fringe damp above apologetic eyes.

‘I think it’s time,’ I say quietly. Mr Peters scrawls on Kieron’s notes. The wait for him to speak is unbearable. My heart hammers against my ribcage. Suggesting my youngest son undergo a liver transplant is not a decision I’ve taken lightly. We all knew it was a probability, but prayed it wouldn’t come to this. PSC is typically a slow-progressing disease. Statistically, Kieron shouldn’t be at this stage after five years, but we find ourselves here anyway. It seems Mr Peters doesn’t agree.

‘I’m going to tweak Kieron’s medication.’

‘He’s been in hospital three times in the past two months. He’s getting weaker.’

‘It’s not ideal but I’m not unduly alarmed, Lucy. You know that thirty per cent of kids with PSC need a transplant around ten years after diagnosis. Kieron’s not ill enough to be added to the transplant waiting list. I know it’s frightening but he shouldn’t suddenly deteriorate to the extent that—’

‘But…’ I swallow back my anger. ‘Mr Peters – Rob – Kieron shouldn’t have this disease full stop. It’s uncommon in kids of his age and you can’t predict… you can’t guarantee—’

‘Lucy, no one can promise—’

But it’s promises I want. The promise of a future.

‘Look,’ I say, ‘if we wait too long then Kieron could be too ill for major surgery. It’s becoming clear his liver has a limited mileage and no, PSC shouldn’t have progressed this quickly but it’s not unheard of and it has. If Kieron’s liver is at the beginning of ongoing deterioration, it’s better to catch it now than wait.’ I try to sound measured and calm, not come across as a hysterical mother but a hysterical mother is how I feel. Tears burn behind my eyes. I blink them away.

‘It’s a fine line, Lucy. Of course we don’t want to wait until Kieron isn’t strong enough to undergo an op but I don’t see this is necessarily the beginning of liver failure—’

‘But I know what—’

A hint of agitation creeps into Mr Peters’ voice. ‘We’ll know when the time comes and—’

‘There was this case where a young girl, without warning, deteriorated so rapidly…’ I’m aware that Kieron is in the room so I don’t finish but I don’t need to.

‘That’s extremely rare, Lucy.’