So today, 4th February, is World Cancer Day. Em (and some friends) spent two hours in Morrison’s yesterday with a CLIC Sargent bucket and t-shirt. It feels like a significant date.
What feels even more significant is the fact that it’s Casper’s first birthday tomorrow. Whilst it’s not been a constant thought, it’s not an exaggeration to say that we didn’t always know we’d get here over the last seven months. We also don’t know, for sure, how many more birthdays he will have. I hope a lot – as many as anyone else who lives an average, boring, normal, healthy life – but I expect nothing. One tries not to dwell on these thoughts and feelings – and I’m pretty good at not dwelling – but they do cross your mind. And once they’ve crossed it, they leave a stain.
But we have got here, and, right now, Casper remains well. The gene therapy is keeping his symptoms completely at bay. His bloods are good. His calcium levels have stabilised at a normal level after those early high readings. There is no sign of his rash. He is weaning well (albeit not quite as well as Nora did), he has started crawling, and this morning at softplay he was considerably more mobile than he’s suggested he could be before. Boys, eh?
He is, to all intents and purposes, a normal baby right now, and our lives are, likewise, as normal as they can be.
There have been blips. A brief temperature the week before last meant a night in hospital – the first since early November – for what turned out to be pretty much nothing; a standard, minor baby virus. He had a rash for a couple of days afterwards. But it was nothing.
As it’s World Cancer Day, I thought now would be a good time to reflect on how we got to his diagnosis.
Almost from birth, Casper had baby acne, which we thought (almost) nothing of. Eventually it went away, but it’s fair to say he was a spotty baby. He was also sicky, vomiting far more than Nora ever did. Too much? How can you tell? When your first baby doesn’t really vomit at all, any increase with a second baby feels like too much. I remember friends’ babies with reflux basically constantly leaking out of their mouths. He wasn’t that bad, but still…
There was nappy rash, too; again, more than Nora ever had. Enough to worry us. Health visitors, doctors etcetera suggested it was nothing more than a touch of eczema. Nora has a bit of eczema sometimes, usually after swimming. We keep it at bay with a decent moisturiser. Neither Em nor I have ever had eczema. It was suggested that Em should go dairy free in case this was a cause. She did. Did it seem like it helped? Not significantly.
He was a big baby – over 10 pounds – and it was hot, really hot, from early May last year. It was difficult to keep him dry beneath his arms, in his neck, and round his nappy area during early summer. He got sweaty, it got red and angry. Again, health visitors and doctors suggested it was nothing more than eczema. Keep him dry, try an emollient, here’s some antibiotics. It’s nothing serious.
Em was always worried about Casper. More so than Nora. Nora never caused us to worry, not about her health. She seemed invulnerable. She said he felt temporary. I said – in my positive, everything-is-ok way – that he was fine. That everything would be fine. He’s just a different baby. And he is. He’s more dramatic than Nora. More easily upset. But he also has cancer. How much of his nature is him, and how much is his disease?
We went on holiday to France in early July. The day before we got the ferry we saw the doctor; is it OK to travel? They suggested it was fine, that the rash – almost certainly infected eczema – was getting better. It wasn’t.
In France it was as hot as it had been at home; a proper heatwave. On the first morning there we tried to bathe him and he screamed when the water touched his skin. We took him to the nearest hospital – 25 minutes drive away – that had a good paediatric ward. He was admitted. My French is good enough to order food and drink. Medical situations? No thank you. “Erpez?”What? “Erpez.” Herpes? That’s really not good in babies. One nurse suggested we just weren’t keeping him clean enough. Which makes you feel like you’re failing as a parent. Anti-viral drugs, antibiotics, infected eczema, getting better. Nora and I sought refuge in the campsite pool, in a roadside McDonald’s halfway between the campsite and the hospital, as I tried to give her the holiday we’d promised her. He was out after three days. Frank lent us his parents’ house so we could stay somewhere bigger, easier to manage a (slightly) poorly baby in a heatwave (we’d been in a caravan-chalet thing).
Got home, changed doctor, saw him for holiday follow-up on the Monday in the week after we got back. Then again on the Friday, because Casper was vomiting fluorescent yellow stuff; a side effect of all the drugs in France, perhaps. Keep an eye on him, get in touch if anything changes. Who worries about a baby being sick? Babies vomit; babies get rashes. It’s not unusual. I was away at a conference. That night he started vomiting again, and didn’t stop; every time something hit his stomach, he brought it back up. All night. More and worse than his regular sickiness. More than just a baby being sick. More than just a baby with a rash.
We called 111 at 6am; they referred us to Devon Doctors, who referred us to A&E. “I’m not concerned with the vomiting, but this rash…” said the consultant in the Paediatric Assessment Unit. He just happened to be a paediatric oncologist. He’s now our paediatric oncologist. One of them. Simon.
Langerhan’s Cell Histiocytosis was mentioned as a possibility that Saturday morning, almost straight away. An “auto immune disease”. “Highly treatable, but it does need chemotherapy”. A clue as to the fact that it is, essentially, cancer.
He was transferred to Bristol overnight Monday into Tuesday. Nora and I were given a room in a CLIC Sargent house in Bristol near the hospital. Back and forth up the M5.
Test after test after test. He was formally diagnosed on the Wednesday evening. More tests. A general anaesthetic for an MRI scan, and 15 hours later another general anaesthetic for a Hickman line to be inserted and biopsies to be taken. A whirlwind. Too much to take in. Social workers, psychologists, oncology nurses.
And that, roughly, is how we got to where we were when I started writing here again in August. Seven months with cancer. Chaos, pain, worry, anxiety, fear, joy, hope, disappointment, grief, confusion, fear, fear. Fear. Life with cancer. Your baby with cancer.