So he’s in hospital again tonight. I think that makes night 32 in a hospital. Chemo this morning – first dose of phase two, re-induction – but he was sick a couple of times before we took him in (straight after giving oral meds each time), and was sick again this afternoon at home (after meds again), and then his temperature spiked to 38.3.
Is it the disease? If it’s a sickness bout again (4 weeks exactly since the last one) it seems milder, and the temperature isn’t consistent with that. Is it a bug? Could be. Reaction to chemo? Could be but unlikely – he hasn’t before. Just a baby’s spiking temperature? Could be. We’d ride out a 38 temperature with Nora, give her Calpol and cuddles and she’d be fine in 24 hours. Can’t afford to do that with Casper. So we’ll see how it goes.
The port in his chest has a downside; though we can bath him and he’s not pulling at dangly plastic pipes that go into his heart, it can be awkward to access, especially if you’re in after hours and its not the most experienced nurses on duty (even the less experienced ones are great, they just don’t deal with ports etc day in, day out). Getting his port accessed and drawing blood tonight was heartbreaking. I won’t go into too much detail but I’ve spent far too much time restraining my baby son while we try and position his head and arms to allow blood to come out.
Other news: I’ve got over the need to tell every stranger (generally older women) who coos over Casper when we’re out in public that he has cancer. I’m letting him just be a cute baby, rather than a cute baby with a disease that’s going to make you cry when I tell you about it. At one point today three separate women were all cooing at him. There’s a strong urge to say “don’t prod my baby ffs he has cancer are yr hands even clean”, but when he’s not neutropenic is there any point?
More other news: remodelling the extension is practically done; just aesthetic finishings (and finding money for a floor at some stage) to tidy up, and then furniture and stuff. But we have the big L-shaped kitchen / diner / family room we always wanted, and a workable, sensible utility room too.
More other news 2: been watching a lot of Queer Eye. It feels like a proper antidote to our turbulent times. Learn to love yourself so you can love everyone else.
Post script
More other news that’s actually really significant: I went to work yesterday, for the whole day, in shirt and shoes, and answered emails and went to meetings and gave my opinion on things like I’m meant to. I also got told by my boss that I shouldn’t be back yet, which is nice; I’m lucky to work with people who are incredibly supportive and for an organisation that’s big enough and progressive enough to not put me under any pressure at all to go back – in fact the only ‘pressure’ I’m feeling at all is to make sure I look after myself as well as Casper and Nora and Emma.
Sick Mouthy 