Casper’s LCH

A friend of ours works in fundraising for Cancer Research. She’s asked if we can write something about Casper for a team meeting to help motivate her team to raise money. I’ve written this piece for that purpose.

Casper was born one Monday afternoon in February, in a giant paddling pool in our kitchen. He weighed 10lbs 2, and was born without any pain relief, not even a paracetemol, just how we hoped – as little medical intervention as possible.

There have been a LOT of medical interventions since.

In July Casper was diagnosed with Langerhan’s Cell Histiocytosis, or LCH. The initial suggestion that he might have this condition came when we were admitted to hospital early one Saturday morning after he’d been vomiting all night. The consultant paediatrician was unconcerned with the vomiting though, and much more interested in the rash that we’d been told, by several doctors, was probably just eczema. It wasn’t.

The consultant was careful; LCH was an autoimmune disease, and highly treatable, though admittedly with chemo. We were concerned, but alarm bells weren’t quite ringing. Then we were moved to the paediatric ward, knowing we would spend at least a few days there. We were met by a social worker from CLIC Sargent. We knew what that meant immediately. Cancer.

That initial admission to the Royal Devon & Exeter Hospital turned into a two-week stay at Bristol Royal Children’s Hospital, and somewhere in the region of 50 nights in hospital over the four months since. Nearly 30 blood transfusions. Two six-week bouts of chemotherapy, steroids, and an array of anti-sickness drugs. Skin and bone marrow biopsies, ultrasounds, x-rays, endoscopies, lines inserted into his chest, nasal-gastro tubes and pump feeds. 48 hours in hospital and precautionary antibiotics every time his temperature hits 38 degrees, just in case it’s sepsis (or even something less sinister). Baby’s temperatures hit 38 degrees a lot. He cut his first teeth in hospital. He first sat unaided on a hospital bed.

LCH is a complex and weird disease, most akin to blood cancers like leukaemia. There is much debate over whether it technically is or isn’t cancer, but when your child has it, that’s semantics. Because it affects the immune system, it can manifest anywhere in the body, in one location or in multiple locations. Just in the skin or just in the bone, and six weeks of chemo etcetera normally clears it up easily. But if it’s in a risk organ, it can be very tricky. Dangerous, even.

Casper has LCH in his skin, his bone, and his gut. He has it in complicated and unusual ways. He doesn’t follow the textbook, not that there really is one because only about 50 people a year in the UK are diagnosed with LCH. Consequently there is little research, and what there is, is part funded by CRUK. Despite initial tests coming back negative, we have a suspicion that there is bone marrow and/or liver involvement, simply because of how may blood products he’s needed. A couple of weeks ago it became clear that the initial treatment plan wasn’t going to be enough to fix him. His skin and bone are clearing well, but his gut involvement, and any other involvement, needs something more.

After much discussion and negotiation, Casper has been approved for an experimental gene therapy. He is too young to be part of a trial, so the drug company are giving the treatment on a compassionate basis. He is essentially a one-baby research project. Because of a mutation to his b-raf gene, he can be given a b-raf inhibitor, which should theoretically ‘switch off’ the disease, for as long as he takes the inhibitor. So not a cure. Curing will probably involve more chemo, in the future, when he is stronger and has a more developed immune system. Research will, we hope, help to fix him.

Casper was nine months old on bonfire night. He is well known in the children’s ward, partly because he spends several nights a week there, but mainly because, despite everything, he is outrageously, ludicrously happy. He smiles almost constantly, even when he’s poorly. And luckily that’s not as often as you’d think – most of the time he does not present as a poorly baby.

But there have been moments – thankfully few – where we have held him, inconsolable, swollen, crying, vomiting, in our arms and feared the absolute worst. Part of you fears the worst constantly, the 5% of your brain that is always switched to the most anxious, crisis-ready mode.

Cancer is horrific. Not just the disease itself, but the ripples of chaos and disruption it sends across the rest of your life, your family, your entire world. Without research, cancer destroys lives.


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.

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:

(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.


Today we met with Helen, the lead consultant dealing with Casper’s care. She’s based at the children’s hospital in Bristol, but visited Exeter to meet with all her cases at the RD&E. To put it simply, Helen seems to set the strategy and Simon and Corinne, the RD&E consultants, seem to run the tactics – they see Casper every week, administer his drugs, and deal with the blips and awkward moments, like when he gets a temperature and needs to go in for antibiotics and observation.

Which happened last Thursday after his chemo and has happened again today! With hindsight, we think last week’s temperature was just teething; he’s up to six teeth now, his cultures came back negative, and the way it played out makes it seem likely that teeth is all it was. Which sucks, but it’s better than the alternative – which is him getting an infection and being really ill.

Today we think it’s likely he’s just got a mild cold virus; Nora’s temperature spiked yesterday, but a dose of Calpol and a good night’s sleep later she was fine to go to nursery where she had a good day. My throat is a bit tight this evening. 2+2 usually = 4.

But that’s an incident, temporary. A blip. How’s the big picture with Casper’s LCH? How’s he responding to treatment?

With fingers crossed and wood touched, things are going well. Helen is pleased with Casper’s progress, and we will continue with the plan we always had: 6 weeks induction, 6 weeks re-induction, then on to maintenance. Today was week 2 of re-induction. We’ve not had a sickness bout in 5 weeks. His albumin levels have consistently stayed in the high 20s for the last month or more, having been in the teens initially. The rash is all but gone, and what remains is petechial staining, likely a side effect of his low platelets rather than the scaly LCH rash. Given that bone marrow came back clear last week, it’s all going well.

Which isn’t to say that we’re coasting; Em and I are on tenterhooks every day in case he vomits and it turns out to be his gut slowing down, in case the rash surges back, in case his temperature spikes and it turns out to be a serious infection. His blood counts are still chronically low; he goes through platelets like nobody’s business, and his red blood is seldom close to good. Had he not had a temperature that needed an overnight stay tonight, the plan was to go in at 9:30 in the morning for a transfusion anyway.

But he is happy, he is smiley, he is charming, he is doing well. Having been steadily on the 91st centile for the first few months of his life (how?!) he’s now dropped to the 50th but remained there consistently; a much more sensible size for a baby of ours. Helen jokingly described today as “the best consultation ever”, because Casper just sits there grinning at you and eating his own socks like nothing is or ever was wrong, and he is delightful. He’s the kind of baby people stop you in the street to comment on. He’s ace.

Casper update

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.

What is Langerhan’s Cell Histiocytosis?

Been vaguely intending on writing something brief about what it is that Casper’s got for a while, and then a fellow oncology parent asked me about it today (and mentioned having found my blog) so… strike while the iron’s hot.

Keep in mind that I am not medically trained or particularly scientifically-minded; the rest of this post is based on stuff I’ve read and been told over the last few weeks. I’ll link to more official authorities on this disease at the end.

Langerhan’s Cell Histiocytosis, or LCH, is pretty rare: there are approx. 50 cases diagnosed a year. Most of those are children. Opinion is divided over whether it’s a cancer or not; it doesn’t always behave like a regular cancer, and it doesn’t cause tumours (as far as I’m aware from what I’ve read and been told).

Langerhan cells are part of the immune system, and in LCH, I understand, they basically go a bit nuts and attack your own body. Because they’re in the immune system, it can manifest in all sorts of places and all sorts of ways; most commonly it seems to affect the skin, but it can also affect bone, bone marrow (and therefore blood), and internal organs.

It can be single system – affecting one part of the body – or multi system, affecting more than one part. Single system can and seemingly quite often does just spontaneously resolve, especially, I gather if it’s just in the skin (hence not like a regular cancer). Multi system doesn’t seem to do that.

Treatment is primarily chemotherapy and steroids. Gene therapy can be an option. You’re treated by oncologists, hence it’s easier when someone asks to just say he has a rare and strange type of cancer than give a full spiel.

No one really knows what causes it’ it doesn’t seem to be genetic, and there don’t seem to be common environmental triggers. That said, I still told someone off for smoking outside the oncology department at the hospital today. Every little helps.

These are the two sites I’ve mainly used for information; don’t read Wikipedia, because you should never, ever look up anything medical there.

(Almost) midnight special

Children are strange and resilient creatures.

So, we have builders in knocking down walls and moving water pipes at the moment; Em and Casper are staying at her mums to avoid any dust, but Nora stayed with me last night so I can take her to nursery first thing. Fine and dandy.

Except Nora is at the tail-end of a slight cold – the coughing stage – and she woke herself at 10pm last night just as I was about to turn the TV off and go to bed myself. Cue frantic search for Calpol to no avail; our supply is with Em and Casper, of course. Cue frantic texts to neighbours, but it’s late night and, understandably, no one responds.

Cue semi-frantic 10:45pm drive to the little Tesco, Nora in her nighty and trainers, to buy Calpol. Once we’re home and it’s administered, I’ve put vaporub on her chest and back, and propped her up on a second pillow, she’s asleep in moments, and stays that way until nearly half past 6 in the morning when she wanders into my room for CBeebies.

Apparently Nora has no memory of our late night trip to the shop, which at the time she thought was quite the adventure!

Single parents presumably deal with stuff like this on their own all the time; they have my everlasting respect.

Hopefully today the plumbing gets finished and the new stud wall might start to go up: we’re losing a playroom / fourth bedroom downstairs (turning it into a utility room / toilet), and opening up the previous utility room / toilet to make a big L-shaped kitchen / diner / family room. The old utility took up the best part of half the downstairs extension, and faces south-south-east, so gets the sun most of the day from late morning. Meanwhile the playroom as-was faces onto the shared driveway and never gets direct sun; much more sensible to stick a utility room there. (To clarify, this was all planned a few months ago before Casper got ill; we’re not totally insane.)

Meanwhile, Casper’s biopsies are booked for Friday morning; we need to be in Bristol for 7:30am. If we’re back in time there’s a chance I might record an interview for local radio about my experiences with the NHS. There’s a lot to tell.