In limbo

“What do you dream about, daddy?”
“I normally dream about mummy, because I miss her. What do you dream about, Nora?”
“I dream about Casper, because I miss him, and I want him to get well, and be home. And when he is older, he will be.”

At home since Sunday lunchtime, having been admitted the previous Thursday (so eight days ago) with a temperature, which turned, very obviously and quickly, into a cold – he’s full of snot. Decided to taper steroids to try and avoid the Monday morning temperature, and sure enough, even though we tapered, this morning his temperature rocketed to 39.5 at peak. So back in hospital this morning at about 8am.

That Thursday eight days ago was probably the lowest point we’ve hit. Em couldn’t face going back in after barely 24 hours out (some of that 24 hours spent in the hospital with Casper having chemo, anyway) (likewise he was in yesterday for bloods and the day before for tests – even when he’s out, he’s still in hospital). She also couldn’t face letting Nora down, as she’d promised to do a Halloween fun run with her. We argued, big time. Unpleasantly.

But we got through it. I went to hospital with Casper, Em and Nora did the fun run, Em spent the night at hospital with Casper and I spent the next day with him in hospital while Em and Nora did things, even if all that involved was sorting the washing out. Even that level of mundane domesticity is a release compared to being trapped in hospital. As lovely as the people are, it’s not home.

The previous Saturday, I’d had what I can only conclude was a panic attack while trying to manage the kids through breakfast while giving Em a bit longer in bed. Which is not an unusual scenario at all, but with moaning kids, tube feeding hanging over us, the stress of recognition that his illness is more serious and needs a new treatment plan, Casper’s timely separation anxiety meaning he needs to be held almost constantly, I couldn’t cope. My heart raced. My breathing went weird. I wanted to escape. I’ve never experienced anything like it before.

The gene therapy should start the week after next. We’re done with chemo for now. We’re putting him back on steroids full time to try and avoid the temperatures. I think we’re at 23 transfusions now. He’s still smiling. Life is… just about tolerable. Less a rollercoaster than a straight line, slightly below par, that is occasionally punctured by horrific, jagged, scarring, bloody knife edges, that you can sometimes dodge, but not always. We are scared for the future. Trying to be positive, but scared. I think – I hope – we will get there, but it is tough. Nightmarishly so at times.

In unrelated news, the Robyn album seems great. Julia Holter too. And Neneh Cherry. Half expected Neneh and Kieran to make some bangers, but it’s really low key and beautiful. Gutted about Hookworms, love their latest album but it feels tainted now. Blood Orange and Rival Consoles records are great. Can’t face listening to the Low album yet. Field Music still did the best single I’ve heard this year (“Count It Up”). Nora is obsessed with “Caravan Of Love”, Nothing Compares 2 U”, and “Baby You’re A Rich Man”. And carbonara.

The cats are OK.

We’re in limbo.