I watch his shoulders shudder with giggles. His smile is my minds picture. Even though he is hoody up, turned away, I know what his expression will be. His name means ‘the laughing one’, did I ever tell you that? The laugh of your child, ahhh, always the sweetest sound. We spend so much time together right now, at hospital daily, I know without asking that he is watching Remy on puppy cam. He likes to eat pants (the puppy, not Isaac); he owes us more than a dozen pairs so far (…why do we call pants and knickers pairs? It’s not like we have two bums?) and a whole macca cheese; with two-way audio we can freak the dogs out by talking to them through the camera, much to their bewilderment and our endless fun.
CRP levels (or C-reactive protein, or better still, his CRAP level, as we like to call them) indicate inflammation in the body, caused by infection. While in hospital, he is subject to a massively increased number of tests. While at the party, why not dance? (I’m sure there is an actual idiom for this that I cannot recall, but, ykwim). So we have an unprecedented frequent view of his crap levels and many more test results right now, and they are, well, pretty crap.
He is spiking almost daily fevers, and then not. He coughs even more, and then not. The sputum results suggest he is already on the right abx, so why is he not improving more? It’s all a bit odd. Next week, he will have more tests for good measure and another CT to try and figure all of this out. He’s not sick sick, but whatever this is, it gets ten out of bloody ten for persistence. It’s been almost a month. We’ve tried numerous oral and nebulised antibiotics, next week we will start IVs once again. Or steroids. We’ll see. In for a penny, in for a pound.
This years fundraising plans are underway. We kick off with a collection day outside Tesco in a couple of weeks (it’s rare to get a slot for these now - if anyone would like to volunteer to help us, on the 24th, please get in touch) and a friend is organising a gig in July, with ticket proceeds going to the CF Trust (very kind of him). Along with the annual raffle we hold at my work, it’s likely that we’ll smash that magical number of £100,000 raised for the Trust since Isaac was born. Wow.
A real change to Isaac’s treatment options are closer, but even that means many more months of this (infection, inflammation, extra treatment, repeat). Research and trials are slow, lengthy, complex. It’s like smelling the most delightful food ever, but not knowing quite how we will get to taste it. When we do, it’s going to be a fucking feast, and you’ll all be invited to the party 🎈
CF facts: Around 10,800 people in the UK have cystic fibrosis; that's 1 in every 2,500 babies born. Cystic fibrosis affects around 100,000 people in the world. Cystic fibrosis is a genetic condition. One person in 25 carries the faulty CF gene, usually without knowing; that's over two million people in the UK. If two carriers have a baby, the child has a one-in-four chance of having cystic fibrosis.
Art at the Royal Papworth Hospital
