Oranges and lemons

Sadness at joy / joy at sadness.

Oranges: Casper has been approved in principle (fingers crossed) for gene therapy.

More oranges: It can mainly be delivered in Exeter, with a monthly brief trip to Bristol, because it’s being given on a compassionate basis as he’s too young to take part in a trial. This has been arranged by Helen in Bristol in liaison with a guy called Johannes, based in Cambridge, who is the leading expert in LCH in the country, and who has a strong relationship with the drug company.

Another orange: The drug company will give the treatment for free, which saves the NHS money. That’s marketing for you. Big pharma isn’t all bad.

Lemons: Johannes is involved in Casper’s case because Casper is complicated and not easy to treat.

More lemons: We’re broken. Smashed into little pieces. Em and Casper are more in hospital than out at the moment. The stress is unbelievable. Work is also complex and uncertain right now (though I have a huge amount of support and a base level of rock solid job security; it’s just that this has all happened while I’ve been on secondment to a project that’s having a pretty seismic impact on the way we do things).

There’s been a lot of crying over the last week. My positivity and ‘doing OKness’ has taken several big knocks, and now I’m off my perch it is difficult to get back on it steadily. Em is broken by being in hospital so often. As lovely as the staff are, as supportive and caring as everyone is, it is, by necessity, isolating.

More lemons: We’re having to feed Casper via a tube; an augmentation to, not a replacement for, boob and weaning, but a nasal-gastro tube is a very strong visual signifier of his disease. His gut isn’t absorbing nutrients as well as it should, and he needs certain types of fats in order to produce the proteins that will help his body make blood.

More lemons: Casper’s had about 18 transfusions now. In a simple LCH case at this point there might have been a couple. After half a dozen we were blasé about them – “isn’t blood great! Give him a bag!” – now we are worried. Why does he need so much, so often.

Oranges: He’s still smiling. Still.

Stand up for Casper

As much as I REALLY appreciate what Stand Up To Cancer is doing, when you’ve been talking and crying about your kid’s cancer for two days the last thing you need is to see someone else’s cancer story on TV. I want a cup of tea and some escapism in the evening, a refuge from reality.

Because reality isn’t good right now. Casper is not responding as quickly to treatment as we would like. His skin has cleared very well (albeit not as completely as it might have if there was no other involvement), but his gut involvement is complex and slow to respond. And while it’s better than it was, it’s not ‘better’. His liver is enlarged, his blood counts are low, he keeps getting temperatures. He’s not well.

Which means we need to change tactic, to explore new routes of treatment. Different chemotherapies, perhaps, or, if we’re eligible, experimental gene therapies. Both have upsides and downsides. A week a month in Bristol for one approach; a monthly day in London for the other.

Yet the crazy thing is that he still doesn’t look poorly, he doesn’t act poorly. Right now he’s on Emma’s lap investigating a KitKat wrapper and smiling his head off.

Me, on the other hand… I’m not doing so well. Despite what I wrote last week about being OK, scoring a 4 or 5 out of 10, over the last couple of days I’ve hit a 2. Yesterday I properly cried my eyes out at the hospital, weeping in front of Simon and Jen, probably the first time they’d seen me cry. Probably the first time they’d seen me even remotely upset. Because I have been alright; we had a plan, we were following it, and the positivist in me saw it working, made me believe it was working. But it wasn’t, quite.

The team are still convinced that we will beat this, that Casper will get over it and be well. But it is going to be complex, and tough, and it is going to take a long, long time.

Casper doesn’t deserve this. He is so young, and so beautiful, and so happy. I love him so much. We all do.

Managing my emotions. Managing your emotions.

It’s world mental health awareness day today. So… mental health. Emotions. Here goes.

I consider myself very fortunate to be blessed with a pretty tough emotional constitution. I don’t really do anxiety or low mood, and I’m pretty self-contained. Until now, nothing that bad has happened in my life. I think as a teenager I was sometimes overly sensitive, but I genuinely think reading lots of existential philosophy and literature, and lots of postmodern theory, during the latter stages of university, plus some occasionally far-out experiences while at university (don’t worry mum, I never really took drugs) (but I did drink a lot…), plus just my general nature and upbringing combined to make me essentially positive. As I’ve said before on here, I think, it’s not that I think good things will happen, it’s that I assume bad things won’t. Obviously I’m not always correct…

Plus, as anyone who knows me is painfully aware, I’m a talker. A massive, loquacious, loud, laugh-at-anything, over-sharing, no-secrets talker, and I pretty much always have been. Partly because I have a shocking memory for events, which means if I were to try hiding things or lying I’d forget who I’d lied to and about what, so it just all gets said, all the time, to everybody. In the hope I’ll remember some of it (I have been known to repeat anecdotes back to Emma without realising that she told me them in the first place). It’s how I cope, but more than that it’s how my brain just works, and, having spoken with counsellors and occupational health nurses and radio producers and various other people over the last few weeks, it seems like it’s stood me in good stead for dealing with this horrible fucking shit we’re in.

But there are still black moments. I have had horrific thoughts, about how it would be easier if Casper just died and Em and I divorced and never saw each other or spoke or thought of this again. About how it would be easier if the whole family just died right now rather than going through this. But they are fleeting, and far apart, and I am aware of them and can (and do) dismiss them.

I share now some lyrics to an amazing song by The Mountain Goats, called “No Children”, which is about the awful months and moments before a couple divorce, and which is about embracing that blackness sometimes, because sometimes you need to; denying it is when you might break, I think.

(The song is on an album called Tallahassee, released in 2002 on the 4AD record label, and it is an amazing record and you should buy it immediately if you don’t own it.)

(Thanks to John Darnielle for writing and singing this song, and for being very funny and wise on an internet forum I use, too.)

I hope that our few remaining friends
Give up on trying to save us
I hope we come up with a fail-safe plot
To piss off the dumb few that forgave us

I hope the fences we mended
Fall down beneath their own weight
And I hope we hang on past the last exit
I hope it’s already too late

And I hope the junkyard a few blocks from here
Someday burns down
And I hope the rising black smoke carries me far away
And I never come back to this town again

In my life, I hope I lie
And tell everyone you were a good wife
And I hope you die
I hope we both die

I hope I cut myself shaving tomorrow
I hope it bleeds all day long
Our friends say it’s darkest before the sun rises
We’re pretty sure they’re all wrong

I hope it stays dark forever
I hope the worst isn’t over
And I hope you blink before I do
And I hope I never get sober

And I hope when you think of me years down the line
You can’t find one good thing to say
And I’d hope that if I found the strength to walk out
You’d stay the hell out of my way

I am drowning, there is no sign of land
You are coming down with me, hand in unlovable hand
And I hope you die
I hope we both die

There is an awful version of children’s ward Top Trumps that can happen from time to time in the parental kitchen. While making tea or toast someone will ask, in one way or another, what’s wrong with your kid. It’s horrible, because we always win. H’s mum always wins. G’s mum always wins. Oncology trumps broken leg, diabetes, asthma, pretty much anything else. But of course you don’t actually win, because your kid has cancer…

(And also, fuck cancer, cancer is going to lose, if we’re using the language of winners and losers; lose to Casper and lose to H and lose to G and lose to all those other kids we see every week, like it lost to Chris and will lose to Charlotte and like it lost to Ian and lost to Verity and lost to all the other beautiful, strong people I know who’ve dealt with it recently, and like it will lose to most of the 50% of the population who will get cancer in their lives. Because if we die with cancer, and not of cancer, because we’re old and our bodies are breaking down anyway, then cancer will not have won. And if we stay together as families and friends and can still smile and laugh and love even if the worst does happen, then cancer will not have won then either.)

I’ve got past the point of telling the old ladies who stop me in the street or the supermarket aisle to tell me how beautiful my son is that he has cancer now. They don’t deserve that, and neither does he deserve to be defined by it. But for a while I needed to do it so I could accept it was happening. Say it out loud. Make that first post on Facebook to ‘confess’ that we were a family in crisis, and cancer crisis at that. Make it real. Because there is a tendency, or was in those first few weeks for me, to feel like you were in a crappy story or film, and that it would end, or the channel would change, and real life would resume. Now I know that this is real life. And we can deal with it.

When I speak to a radio producer or an occupational health nurse or whoever and unburden for 30 minutes or 90 minutes or whatever I always make a point of showing them pictures of him at the end, of how beautiful and happy he is, because I’ve just dragged them through my catharsis and they need to see what I see, just to make sure it doesn’t ruin their day, or even just taint it slightly.

When someone who only knows me tangentially, but who knows what’s going on, asks me how I’m doing, I say “I’m doing OK, all things considered”, and it’s because I am. I know it’s OK to not be OK. But mostly I’m OK. I’m a 4 or 5 out of 10. Sometimes maybe a 6. I never give 10s. But I’m nowhere near a 2.

I try and avoid playing children’s ward Top Trumps in the kitchen now. It’s not a competition. It’s just horrible. Our suffering should not and does not diminish yours. But if you want to talk about it, get it out there, off your chest, etcetera etcetera, you can talk to me. Cos I’ll talk to you. I’ll talk to anyone.

PS. Mum, sorry for swears, but its OK: https://www.independent.co.uk/life-style/health-and-families/swearing-study-intelligent-intelligence-university-of-rochester-a7916516.html

(Yes I eat spicy breakfasts and wander around the house naked a lot, too.)

Family life with an ill baby

Last Wednesday we had visits from both the psychologist and social worker from the hospital, which clarified what we both knew already (and which has been further clarified by the subsequent few days); family life, now Casper is doing well as far as treatment for the LCH is concerned, is now the biggest struggle for us.

Some context: Casper got out of hospital on Saturday afternoon. Em and I argued with each other almost immediately on getting home, because that’s what happens when we get back together after a hospital stay, not matter how long, short, intense, or mundane. Sunday was fine, but this morning Casper’s temperature hit 38, albeit very briefly before coming back down (and staying down, so far, plus no other symptoms). Back into hospital, although just until early afternoon, to be monitored. Simon the consultant said he wouldn’t be surprised to see him back in today when he discharged us; we’re now at 9pm and he’s asleep, having been cheerful all day and maintaining normal temperature.

The long and short of it is that Casper is fine today, and has been for a while now, basically. His skin is better every day. We’re 5 and a half weeks since a vomiting episode. But there’s a constant, low-level anxiety, a permanent murmer at the back of Em’s head and mine, which means you can never really relax, just in case… he vomits… the rash returns… his temperature spikes. And his temperature spikes a lot. After being good on Saturday (1.2) his neutrophils have fallen to 0.4 today, making him vulnerable to infection. So, with a smidgeon of paranoia, basically housebound. Which is better than hospital-bound. Isn’t it?

Having a child with a serious illness is incredibly hard. Having a baby with a serious illness adds a level. I’ve see other couples with kids who are older – 10, 14, whatever – basically work in shifts (which could last anything from a day to a week depending on family logistics), but because Casper is so young (and a tiny bit because of the way we’ve chosen to parent), pretty much 100% of Casper’s care is on Em. I can take him to give her space but never for more than a couple of hours, because then he’ll need to feed. And yet she still managed to organise the alterations to the house, to paint the extension, and, tonight, she even cooked us all a meal (not quite the first time ever, but not far off it). She’s amazing, and, despite the glitches we have, I’m incredibly proud of how well she’s handling this crazy whirlwind of shit that we’ve been cast into for no reason.