Can’t think of a title

I remember conversations about what it was like to have two kids in the early days of Casper, and the conversations we had with people; is it twice as hard having two? Harder? Not that hard? And I remember my comments revolving around how yes, it was hard, but at least that level of first-time-parent anxiety had evaporated, the constant low-level worry about what does this mean, what happens next, what do we do now, and so on and so forth. I thought that second time would be a easier in that respect, that this time around we’d enjoy it more because we knew to have saline nasal drops in the house so I didn’t have to rush out at 10pm and trawl across Exeter trying to find anywhere open selling them, and so on and so forth. Because we’ve done this all before, so we know what we’re doing now. Surely?

Foolish, much?

We are two steps forward, one step back at the moment. Which means we’re still in a net better place now than we were a month ago, but it’s not straightforward. Casper’s bloods aren’t chronically low anymore, he is pink, we’ve negotiated the removal of the nasal-gastro tube as he doesn’t need it for nutrients anymore, and we want to see if he can gain weight through breastfeeding and weaning. He is more cheerful, happier, more alert, and (occasionally) sleeping slightly better than he was. He’s not done an overnight stay in hospital in approaching a month. These are all good things.

But last week his potassium measured high, which is worrying. It turned out to be nothing; a slightly clotted sample because it was drawn from a heel prick rather than his port-a-catheter. This week his calcium is raised, which can be a side effect of the dabrafenib (reported in 2% of cases). It could be influenced by other things too, but it needs managing. It meant he and Em were in hospital until midnight on Friday to have an infusion to balance his calcium. As Simon the consultant says, his job is about managing side effects. That’s what oncologists do. Nothing is ever simple with Casper. His calcium is normal today.

Last week Strava sent me my annual summary. Pre-Nora I used to cycle between 2,500 and 3,500 miles a year. Even when we just had Nora I used to manage around 2,000. This year I’ve managed 199 so far. The Christmas tree is up. From Friday I have three weeks leave, the longest break I’ve ever taken. I’ve arranged myself some counselling through work. This is what life looks like right now.


A pink baby

Emma Motherhood-25
So today is two weeks into dabrafenib, the gene inhibitor. I’m at work and Em and Casper are at hospital for his weekly check-up. She keeps texting me numbers that make no sense: his haemoglobin is 125. His platelets are 341. His albumin is 47. A week ago they were 112, 257, and 37 (or thereabouts). His symptoms have essentially disappeared (to be replaced with horrific, toxic shits, and a runny nose; we can deal with that). He has found an appetite (scrambled egg for breakfast today) and gained 400 grams in a week after the initial loss when his normalising albumin levels made him piss all the wrongly-distributed fluid out of his body (that’s what we think happened).

A few days ago a photographer came round to take pictures of Em and kids for a project she’s doing on how motherhood changes women’s relationships with their bodies. We’d commissioned her to do a post-birth shoot when Casper was just a week or two old, and she captured some lovely images of us together in those early, pre-cancer days, so when she asked Em (fully aware of Casper’s illness) if she’d pose for this project Em agreed straight away – not something she’d have been OK with doing pre-motherhood at all.

Anyway, that picture at the top is one that Gaby took of Casper the other day. Obviously it’s been processed and edited, but he’s a pink baby in it. It feels like he’s never been a pink baby. He has blood, at normal levels. And he’s so much more cheerful and lively, too. Problematically so, I suspect, in future; there is a glint of delirious mischief in his eyes, especially when he’s interacting with Nora, that makes me fear for mine and Em’s sanity over the rest of our lives…

Our lives are still difficult, despite this transformation. Normal life goes on. Home insurance needs renewing. Grand Designs gets watched. CDs get bought and not listened to. Vomit is cleaned up. Medicine is administered. Nasal-gastro tube feeds are set-up. It is different, but it is mundane and commonplace. Mostly. He still doesn’t sleep; if the steroids have worn off then the cold he has is waking him. Nora also is not sleeping – she finds her way into my bed almost every night at the moment, a hangover of all the disruption and upheaval and upset of the last few months now manifesting, probably. It had to at some point.

He will have this disease into childhood. He will be able to walk and talk and understand and ask questions. What will he ask? Will he ask anything? Will it be so mundane and commonplace that he doesn’t think about it? I don’t know what’s better. Or worse. We know another little boy with a very rare disease. How does he cope? He runs and shouts like any small boy.

There is also, at the back of my mind, the worry about what the hell Brexit will do to our situation. Talk of medicine shortages is petrifying. The consultant in Cambridge who’s the leading expert on LCH in the country is probably from the Netherlands, judging by his name. The drug company is in Switzerland. The research project running the gene therapy trial (that Casper’s benefitting from but isn’t part of) is run out of Austria, I think, and almost certainly has EU funding behind it to some degree (I used to work in research communications, so I know how critical EU funding is for so much medical research). At the very least networks and shipping lines are involved. I very vocally voted remain, and the prospect of this shambles threatening my child angers and scares me.

Big thanks to Gaby for the photo. Her work is beautiful, and you should look at it:

A week of dabrafenib

Casper is now genetically modified, and has been for a week. So far, this seems to be a good thing.

The last week or so before we went to Bristol on Thursday were tough; Em and I were both struggling with intense anxiety, and not treating each other well as a result. Casper, clear of chemotherapy by two or three weeks, was definitely below par, and we were worried the LCH was beginning to manifest again. His liver and spleen were swollen.

He was still going through blood products at an alarming rate of knots – he had a platelet transfusion on Wednesday ahead of the Bristol trip, and had another one on the Friday after Bristol because the Wednesday transfusion hadn’t affected his levels at all.

There had been a couple of alarming vomit episodes, too; flecks of brown after evacuating his stomach contents. Disquieting to see, but not so medically – dried blood, almost certainly from his nasal-gastric tube scraping his insides, and his low platelets. Only a concern if it happens regularly, or if the blood is fresh and red.

When we got to Bristol we argued in the car park, Casper strapped to my chest, with such aggression that an off-duty police officer stepped-in. I burst out crying and we told him our situation and he, very rightly, told us we need to look after each other more than ever right now, and sent us on our way. I wanted to hug him and thank him. A low point not just of this ‘journey’, or our relationship, but of my life. As if somehow this whole thing is anything but the lowest point of my life. (It is. It is despicable, what it does to you.)

Casper had a good first weekend on dabrafenib; his sister’s 4th birthday weekend. Making it up is complex – it’s a powder in a stick, like sugar for your coffee, and you need to mix it with water in a rigid shaking-and-rest routine – but Casper takes it well, and we’ve managed to get the timings manageable (it needs an empty stomach – difficult with a 9-month-old who needs feeding up via a tube right now).

On Monday he had a check-up in Exeter, and when his blood results came back I felt dizzy, almost sick. They were good. Not just good for Casper, but (almost) good for a regular, non-sick baby. His platelets were over 100, having been 11 before both transfusions the previous week. His liver and spleen had receded significantly. Corrine walked past, looked at him, and said “from here he looks good, really good”. He did. He does. He has been 10%… maybe 20%… more Casper… since starting on the gene therapy, even after less than a week. Brighter, more energetic, happier. He had lost half a kilo in a week, which is a concern, but right now, it feels, a little, as if we have our boy back, just a bit. For a while.

Because this may not last. We had no idea what to expect of dabrafenib before Thursday, whether there was a percentage chance of it working or not, and we still don’t know how things will pan out. We did not expect it to be a magic bullet. We know it’s not curative; it only switches off the disease for as long as you take it. He still has cancer / LCH, and he will for years to come, in all probability. There are side effects, but they seem to be no more severe than those of the chemo and steroids, at least so far.

I want to be positive, to celebrate and whoop with joy, but I cannot. Cancer is still there, tainting everything. The top level of worry has evaporated a little, but other anxieties encroach to fill the space it left, and the underlying blackness that is the knowledge that your child has cancer remains. I suspect that even after remission, all clear, years free of cancer, that it will still remain. An alcoholic who doesn’t drink is still an alcoholic, even if the symptoms are gone.

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.