Category Archives: Langerhans

So we took our cancer child to a music festival…

And it was alright.

In fact it was pretty good. Really good, at points.

We’d always wanted to take the kids to festivals, to give them that kind of experience at a young age, and with everything that’s happened over the last year+ we kind of just went ‘fuck it’ back in the spring, and bought tickets and a tent. We thought End of the Road might be the best bet, but the line-up for Green Man was so good this year that we couldn’t resist.

I’m glad we didn’t. Even though I’ve always (jokingly) maintained that standing in a muddy field surrounded by Shed Seven fans on drugs sounded like hell. (It still does.) Even though I’ve never camped properly before, let alone done a camping festival. (we have done All Tomorrow’s Parties a couple of times, pre-kids, but you get a chalet, so…)

So it rained – relentlessly – on the Friday, and was horrific and muddy, and Nora had more than one awful pre-schooler tantrum (including an immense one at half past midnight at the festival toilets which culminated in her yelling at me “it’s my body! It’s my decision! Don’t touch me!” when I was trying to get her onesie off and get her to have the wee that she’d requested I take her for. Yes, there were other people present. No, no one said anything. Yes, some people looked sympathetic, albeit in that ‘stupid fucker kept a 4-year-old up after midnight’ way).

But on the other days – Thursday, Saturday, Sunday – it was generally sunny and warm, and the mud dried up quickly, and the setting was exquisitely beautiful (surrounded by verdant Welsh mountains, in a natural amphitheatre with a babbling stream and a pond and gently undulating fields for camping), and the food, though expensive, was great – Dosa Deli I love you; Goan Fish Curry I love you, Los Churros Amigos I love you – and the kids’ field was brilliant, and the line-up was fabulous, and Em saw a Caitlin Moran talk, and Nora got to watch Kiki’s Delivery Service in the cinema tent, and I even got to see (at least some of a set by) the following:

These New Puritans
Villagers
Stereolab
Sharon Van Etten
Four Tet
Eels
Sons Of Kemet
Fat White Family
TVAM
Big Thief
Stella Donnelly
Emily Magpie
Poco Drom
Aldous Harding

I also got to listen to the following artists quite clearly from the tent:

Yo La Tengo
John Talabot
Father John Misty (Em got to watch this one, with sleeping Nora in the buggy, while I took Casper back to the tent)

That’s actually not a bad return considering that we had two very small children with us.

We managed Casper’s meds. We just about managed Nora’s emotions. We saw old friends, bumped into lapsed and distant ones, and made new ones too.

We’ll do it again.

Who are we if we’re not that cancer family?

We took part in a social bike ride on Saturday, jointly organised by three local community initiatives (Ride On, FreeMoovement, and Exeter Cycling Campaign). We cycled from Exeter quay to Turf Locks, Em pulling Casper in the trailer, and Nora and me each on our own bikes. We arrived last of the group of 25+ people, but everyone was incredibly impressed that Nora (still only 4 years old, remember) rode all the way herself – it’s more than 7 miles from our house to Turf!

(Afterwards I cycled home fast with Casper, jumped in the car and then fetched Em and Nora, whose little legs were understandably knackered – she made it halfway home though.)

When we got to Turf we had a spot of lunch and chatted to the people who’d ridden with us (the ‘social’ bit was the main point of the ride). I got talking to a guy called Andy who, it turned out, knows Ian, who used to be my boss and who recently rode the Nello and sought sponsorship not just for Force but also for CLIC Sargent in Casper’s name.

“This is Casper, who Ian was raising money for.”

Then I spotted Simon, Casper’s paediatric oncologist (our paediatric oncologist, I should say, because when your child has cancer, your whole family ‘has’ cancer), who had also ridden out to Turf for a spot of lunch with his daughter. Not really surprising – it was a lovely day, Simon’s a triathlete (the lunatic), and there are few nicer places to cycle to for a sandwich and a cider shandy than Turf Locks on a sunny July Saturday.

“And there’s Casper’s oncologist.”

Cancer conversation ensued. It gets everywhere.

(Though not with Simon; that wouldn’t be fair. We did talk a bit about bikes, though.)

Casper had only seen Simon two days before, when two significant things happened.

Firstly, Simon referred Casper to have his port-a-catheter removed. The port-a-catheter is, for those who don’t know, a button under his chest that looks like a third nipple, with a tube that goes from the back of it down a vein in his neck and into his heart. It’s how chemo was administered, and how bloods have been taken. He’s not had chemo in nearly nine months now, and is big enough for bloods to be taken from his arm. The port is an infection risk, his current meds are administered orally, so out it comes.

Secondly, Simon has suggested that he only needs to see Casper every month now (appointments are currently every fortnight). My understanding is that typically the paediatric oncology team meet people, see them intensively for a period of months (or years) while treatment is administered, and then say goodbye and fare well once they’re OK, seeing them perhaps once a year or so to check they’re still OK afterwards.

Casper is different – this is more like managing a longterm chronic condition than an acute cancer now, and we’re shifting to that pattern of treatment and monitoring. Casper is ready to not be seen so often, to be as close to a normal boy as possible.

The question is, are we ready?

If you’ve ever dealt with chronic depression, you’ll know that you can cling to it as if it was an intrinsic part of your character, your personality, rather than a disease that affects the shape of your character and personality. “Who will I be if I’m not depressed?” “What do I look like, sound like, and act like without depression?” You may hate this thing that’s affecting you, it may make you feel awful and unable to deal with the world, but it can become very, very hard to relinquish. I imagine bad relationships, and various other patterns of negative behaviour, are very similar.

Because even awful things can become routine, and by becoming routine become, somehow, sort of comfortable, just through familiarity and repetition. Very few things are 100% bad; we’ve received a lot of love and support from the medical team, and removing that (even if not fully) feels scary, for instance.

It’s the same with Casper’s cancer; who will Em be if she’s not taking him to hospital all the time? Who will we be as a family? We didn’t want to be “that cancer family” when this began, and we still don’t, but… We also are that cancer family, and the repercussions of this last a lot longer than the diagnosis or initial treatment. Casper is 18 months old next week – we’ve barely existed as a family of four without cancer being involved. Despite the frequency of appointments dropping and the prospect of his port being removed soon, we are not finished with cancer and cancer is not finished with us.

In other news, Neil at work is cycling LEJOG next week, and raising money for a charity that research the family of diseases that Casper is affected by. You should sponsor him.

12 months of childhood cancer

Depending how you look at it (Christmas or Easter, essentially) either today or tomorrow is 12 months since this whole cancer thing started. Tomorrow by date, today by day. It will always have happened on the Saturday after Em’s birthday, in the morning, just hours after I got home from a conference. Those are the signifiers burnt into my mind. The precise date almost doesn’t matter. Easter Sunday. Cancer Saturday.

Or did it start on that holiday to Brittany, those days in a French hospital? Or when he had chickenpox at three months old? Or when he was in the womb? Or at some other point? We will never, and can never, know. But today (or tomorrow) is the day when we met Simon the paediatric oncologist for the first time, and he said “it might be Langerhan’s Cell Histiocytosis”, and this whole fucking elongated, awful, frightening, boring, anxious nightmare began properly.

I could have requested his hospital notes for this post, totted up all the blood transfusions and X-rays and nights in hospital, reduced everything to brutal statistics (30+ transfusions of various blood products; 50+ nights in hospital; 12 weeks of chemotherapy), but as numbing and horrific as those numbers are, they don’t tell the full story. Nothing can.

Three weeks ago we managed out first family holiday abroad since this that trip to France. A week in Portugal, in a villa belonging to Em’s aunt and uncle. Our neighbour, who is Portuguese and a medical researcher, kindly translated the hospital’s letter for us, in case the worst happened. It didn’t. The worst thing about the holiday was managing two small children in a hot and unfamiliar environment. It was pleasantly uneventful.

Life is mostly uneventful now, if not always pleasantly so, and while somehow managing to still be busy. We camped last weekend – one night in Woolacombe – a dry-run for when we go to Green Man Festival next month. It was also pleasantly uneventful. We argued, of course, stressed, said we should just sack it off and go home before the tent was even up, because, even though life is “normal” now compared to the whirlwind of diagnosis and chemo and surgical procedures to install valves and tubes that can pump drugs into and extract blood directly from my baby’s tiny heart, life is not ‘normal’, and never will be again. “It’ll never happen to us” was a default setting. The worst thing imaginable happened. Why the fuck wouldn’t it happen again? We know now that it can. Every blemish, every cough, every dip in appetite, every odd step; is the cancer back? Has the gene inhibitor stopped working?

It’s a long time since I’ve had that weird, vertiginous sensation that this is all a shitty, horrible film about cancer that I’m stuck watching, or a dream, or someone else’s life that I’ve somehow been zapped into like Sam in Quantum Leap, and had that desperate, irrational hope that someone ineffable, somewhere, will snap their fingers and this will all be over. I had that feeling a lot in the early days, in those first few weeks. Every so often – only every few months, probably – it comes back, that sense of the world tilting and coming up to meet you as you realise and acknowledge, again, that your baby has cancer.

“He’s NOT a baby daddy; he’s a toddler now.”

There was a guy, with a homemade banner about god, preaching on the High Street today, telling us that only god can save us from hell and damnation, and I wanted to slap him, grab him by the shirt, and scream in his face that I’ve been there, that it’s here now, that eternal damnation is just that – eternal, low level, ambient somehow, a permanent disquiet that soaks into your bones, like lenses of glasses scratched so much that you barely notice, most of the time, that the world is scarred and blurred and unclear in ways it never used to be. And then you do notice, and you remember that it’s like this forever, and you can never escape. I wanted to ask him how he could justify his god having afflicted my absolutely innocent baby with cancer when he’d barely had chance to be alive. I wanted to name all the other kids with cancer who we’d met, name them and their cancers, the neuroblastomas and the lymphomas and all the others, and ask him how he squares this with his faith. But I just walked past, because what good would it do? I don’t believe in god. Christian values I’m good with. Love thy neighbour, etc. Do unto others. The meek will inherit the earth. I just don’t see our political leaders acting them out much. I do believe that we invented ‘god’ as a concept as a way of explaining love.

Casper is, as ever, oblivious to this, except when we give him his meds. We started a new delivery method this week; still via syringe into his mouth, but dissolved tablets rather than powder. It doesn’t taste as good; he used to actively like the last lot; now he fights you. The fear that he’ll spit it out, not get the full dose, and that the cancer will come back is there at every administration.

Casper is also, it must be said, an idiot. He plays the fool almost constantly, doing things to get a laugh from his sister or from us; plate on head, funny faces, waving his arms and making weird noises, then laughing, laughing, laughing. There is a glint in his eyes – Em has said this almost since he was born – that means mischief, which Nora never had. As if he’s not put us through enough already. And good grief does he love to touch bikes and cars, especially wheels and pedals. We went in the bike shop today to pick up my bike after getting it fixed, and his eyes went like dinner plates.

How oblivious is he really? He’s been unsettled tonight; I’ve had to settle him three or four times between 7:30pm and 10pm. Has he picked up on us being slightly unsettled? What will he remember of this in five years time? How will he explain his scars to girlfriends or boyfriends when he’s older? Will there be emotional wounds we can’t see now?

In a few weeks he’ll start nursery, at the same time as Nora starts school and Em goes back to work. His nursery is on campus – the same one Nora went to, except he’ll be the first cohort in their new building. The staff all know him and his story already. I take him into work to show him off so often; look how alive he is! Look how he can walk, and babble, and smile! When your baby has cancer you kind of convince yourself that he’ll never do the normal developmental things; he’ll never walk, he’ll never drink from a cup, he’ll never manage solid food, he’ll never… be more than a baby. Be a toddler, or a little boy, or a child. Your brain freezes time in the present, because the future could be unimaginably bad, so you can’t imagine it at all.

The last 12 months have been horrific. I am, at heart, a positive person; energetic, talkative, about solutions and newness and change – not glass half empty or even glass half full, but rather “let’s go to the tap together and fill the glass and talk about making sure it’s always full in the future!” – but I’ve been as close to suicide this year as I can imagine I ever will be. Not just suicide; in the darkest moments I’ve wanted to end it not just for me but for all four of us, because my family is the most important thing in my life, and the thought of it splintering, collapsing, decaying and disintegrating is my biggest fear, my strongest trigger, the one thing I cannot cope with.

But I got through that, and now, mostly, things are OK, and I am OK, and we are OK. To look at us in the street you’d never know, most of the time. Em has entered the London Marathon for CLIC Sargent next year. We’re making progress on getting the house how we want it. I’m beginning to care about work again, sometimes. We’ve had, so far, mostly, a nice family summer – Portugal and camping and bike rides and eating in the garden. But it’s all tainted, all stained, all a little spoilt, like when you buy something new and you scratch it almost straight away and even if you can polish the scratch away you know it happened, that it’s there underneath, and no matter how many people tell you “but you know it’s yours now” it doesn’t matter because you just wanted to have whateveritis perfect, unscratched, for just a little while.

We watched Arrival at some point over Christmas, despite several people having told us explicitly not to. If you haven’t seen it, the plot is… relevant to out recent experiences. At the end I cried – great big gobby tears that shake your whole being, like a damn is breaking and concrete is being pulverised by the pressure of the built-up water behind it. It was one of the most cathartic things I’ve ever experienced. I am OK, now, mostly. But I think I want to watch Arrival again soon, just to purge. Break that damn again. Feel the ground rise up. We are in this for a long time. My son has cancer.

My son has cancer.

My son! He has cancer.

My son.

My daughter.

My wife.

Me.

Our family has cancer. It’s in our son. It’s turned off right now, but it hasn’t left properly yet.

Our family has had cancer for a year.

No news is good news

Never quite knew which way to take that phrase. There’s no such thing as good news? Or, if there is no news, it must be good? The difference is significant.

There is no news about Casper. He remains well, and strong, and increasingly noisy. The dabrafenib does what it does. You still worry, constantly, and post traumatic stress disorder lurks around every corner – it’s approaching a year since diagnosis, and tomorrow morning we go abroad on holiday: last time we did that he spent three days and nights in a French hospital and was diagnosed with cancer a week after we got back. Every temperature, every blemish, every abnormal poo sets off alarm bells.

I promised that I’d keep posting here about treatment still going well as often as possible, just in case anyone in the place we were in 11 months ago finds this blog and needs good news and a longer-term perspective. Even when there’s nothing to say. Let’s take the latter interpretation. No news is good news.

Someone’s just reached out to Em on social media about their baby just starting chemo for Langerhan’s, so this post is for them. We’re a year in, and things are OK. We know what you’re going through. You’re not on your own, and you will get through it. Ask for help when you need or want it. Only work with the facts as given to you by your medical team (no dr google). Take each day as it comes and do whatever is necessary. The worst bit is probably when the whirlwind ends and the dust settles, and the emotional scars and fallout begin to manifest. You can do this.

Casper is still fine

He is crawling, and fast. He has stood unaided for a few seconds, and cruises a lot. He loves food. He shouts a lot. He smiles as much as ever. Trips to Bristol are every two months now. The Exeter paediatric oncology team only check his bloods every month. Life is pleasantly dull, albeit still riddled with an anxiety that you can probably only understand if you’ve dealt with cancer at very, very close quarters. The gene therapy is working, and we hope it will continue to work for at least another couple of years. And then we’ll see what happens. Constantly assessing. Never not worrying. But living, and hitting milestones, and being a family.

World Cancer Day / Casper’s birthday

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.

So, how’s your boy?

A question I’ve been asked several times this week. Some of the askers have been keeping up with Casper’s progress and wondered if there had been any developments. A couple were people I’ve not seen properly since (long) before this started, but who’d heard through the grapevine that something was wrong with him.

The answer right now, thankfully, is simple and positive: Casper is fine. Two and half months into dabrafenib – the gene therapy – his bloods remain consistently good and he is in good health. The other day he crawled forward (deliberately) for the first time. He is still putting on weight. His hair is growing.

A slightly raised calcium level last week has today fallen to ever so slightly below the ‘normal’ line (2.5 is normal; his was 2.77 and is now 2.47; 3 is when it gets problematic) – and no other symptoms of the LCH, his actual disease, are manifesting. He’s also, touch wood, not really showing any signs of side effects.

Em and I are battle-scarred but finding some kind of normality. We’re putting him to bed in the evenings to give ourselves some time without a baby literally upon one of us. I’m back at work pretty-much full time.

Life isn’t what we thought it would be, but it is still life.

Christmas with childhood cancer

Christmas Eve
Hospital first thing to check bloods, then to the Phoenix to see the Christmas theatre production with the kids. Casper, at 10 ½ months old, was rapt for 45 minutes (and quietly fed for the next 30 minutes), and so good that a mum behind us commented on how well behaved and interested he was.

Then we rushed straight back to the hospital for more tests. Four hours in the hospital in total. Not quite how you’d want to spend the day before Xmas.

Christmas Day
Nora slept until 6:40am, in her own bed (following some coercion – “Father Xmas can’t leave presents if you’re not in your bedroom, because he won’t know you live here. No, I’m not sure what time he’ll come – it could be 7am…”), and opened her presents in the most calm and patient manner you can imagine; removing them one-by-one from the sack, piling them up, insisting on mummy and daddy and Casper opening one each for every one she opened, etcetera, etcetera. Almost freakishly calm and collected, actually, given how excited she’d been. I guess surprising you is what kids do.

Boxing Day was calm and quiet, with nothing organised. I think we might have gone for a walk, but I can’t remember where. Time stretches and compresses at Xmas anyway, and days bleed into each other. The same happens with cancer, and my memory is so shot now that I barely trust myself.

London
I took Casper in to hospital for 9am on the 27th to do bloods, specifically to look if calcium was OK, so that we could get the green light to go to London for two nights, something Em had suggested and booked as soon as we started the dabrafenib treatment, just in case he was as OK as it seemed he might be.

Bloods normally take about an hour to get results if you tag them “urgent urgent waiting” for the lab, so in a best-case scenario I’d be out by just after 10. But of course nothing ever happens with 100% efficiency, especially not in hosoital, and we needed a letter too, to give to any London hospital explaining Casper’s illness and contact details for his consultants, should the worst happen despite fine blood results.

So it was almost 9:30 by the time bloods went to the lab, and practically 11 by the time results got back. His calcium was not only stable from it had been on Xmas Eve, but down, to regular baseline normal. A whoop of joy, a hug for Lou who delivered the good news, and we were on the A303 inside 30 minutes (just about); Em had been too paranoid to pack the car before I phoned the actual results through, even though all the oncology team had been working on the assumption that we’d be fine, but the bags were packed and we just needed to load them, ourselves, and kids, and turn the key in the ignition.

Traffic on the A303 was horrific, and it took 5 hours to get to London, which resulted in anxiety as to what to do that evening; had we arrived at 3pm as planned we’d have headed straight into the city, but arriving at 5pm was really too late to do that for the kids. So we had a McDonald’s sanctuary tea, and retired to the hotel room to watch a film together.

Our first full day started at the Natural History Museum for a couple of hours. Overwhelmed by people and dinosaurs we fled to a nearby Leon for lunch, and then headed back so Nora and Em could ice skate together, which they both clearly adored. Then to the Lego shop (amazing), tea in Leicester Square (Shake Shack; disappointing compard to the memory of NYC many years ago), and back to the hotel for bed.

The following morning we did Tate Modern so Em could go to an exhibition (Anni Albers, a Bauhaus alum who did textiles), lunch, and then Hamleys (the mark-up on everything! the chaos!) and Regent Street, before heading back to the car and driving home at 5pm. It was busy, it was occasionally a little fraught, but it was good. We were a family, away from home, away from hospital.

Other stuff
I took Nora to see the new Mary Poppins film, which prompted a raft of almost unanswerable questions (“where is the person with the orange hair who gives them food?” “the little boy in this film is the daddy in the other film?”). She loved it, and we have a list of other films to go and see together over coming months (thanks to trailers). I am beyond excited for the second Lego Movie.

Heather, the CLIC social worker, has won us an award of a free 4-night stay at a castle in Dorset, which belongs to the Landmark Trust. Each year they offer 40 or 50 free stays to deserving families; this year Heather applied for two families (including us), and got them both. So in March we’ll spend a week in a castle with some friends (who’ve also been through a shitty, cancer-spoiled last 12 months). Nora is, understandably, very excited.

A local charity (very local; they’re based about two streets away from where I grew up, and one time when they were in the ward to talk to Corrine I realised I recognised the family) who provide ‘wishes’ to local children with cancer (they lost their own son to the disease), got in touch to say they were in operation again after a short break, and what would Casper and Nora like? More good news.

Yesterday (Friday) we went to visit Little Bridge House near Barnstaple, part of Children’s Hospice South West, to see about possibly having some respite there. The word hospice, when it was first mentioned that we’d been referred by the oncology team, was as upsetting as the word ‘cancer’ was at first; was there something we weren’t being told about his prognosis?

We had considerable trepidation about visiting; do we belong there if Casper is OK at the moment? Is it healthy, for Em and I, to spend time around kids who are actually dying? Would those families resent us? Are we deserving? We have been referred, considered, and accepted, so that last question is kind of answered for us, but the others would need us to actually go and see for ourselves.

The long and short is that Nora adored it (free softplay, all the time! A team to look after siblings, and do things like baking with them! A magic sensory garden to run around in! A jacuzzi!), and our contact people seemed genuinely really lovely (a pre-requisite for working there, you’d imagine), so we will take advantage at some point. If it gives Em a couple of hours free to sit somewhere quiet and read a book, it is worth it.

Casper continues to be well; his bloods are great, he is putting weight on, weaning well, and eating like a baby born at 10lbs 2 at last. His hair is growing, he is increasingly energetic and vocal, he seems likely to crawl forward any day now (he can go backwards, and bum-shuffle forwards), his fine motor skills are good, and he continues to smile at and charm almost anyone he meets.

Which would make you think that life is easier, right?

It is Casper’s 11-month birthday today. He still has cancer, even if he essentially has no symptoms right now. The anxiety and stress and worry has not disappeared; the calcium thing basically induced panic in us at the prospect of him having to come off dabrafenib, if that was determined to be the cause. We will, at some point, have to deal with coming off this amazing drug and letting Casper’s body fend for itself, before, potentially, inflicting even stronger, more toxic, more unpleasant chemotherapy upon him. When he’s been through so much already.

Mine and Emma’s relationship is in the worst state it’s ever been. The day after we got back from London we argued about nothing and everything until we essentially both got so worked-up that neither of us could cope, and I lost it, ending up punching myself in the head out of frustration and fear and panic so much that I now have a spectacular black eye. Em’s dad came round and we found some kind of equilibrium. I had my first counselling session just before Xmas and my second on January 3. It’s too soon to know if it will help but I am positive. Because Casper’s a baby, we don’t get any time alone. Having a baby is a terrific but dealable-with (just) strain on a relationship at the best of times, but when there is so much other anxiety and fear, constantly there, beneath the toddler emotions and the baby necessities and the family logistics that are already more than enough to deal with, it stretches you and stretches you and stretches you until it feels like you have broken, like there is nothing less. I see friends without children and sometimes, just for a split second, I’m jealous. I see friends with only one child and I wonder sometimes, just for a split second, if we somehow brought this on ourselves, if we should have stuck with one.

And then I look at Casper, and he smiles, and makes that noise like a dinosaur, and squeezes his eyes shut, and I think… not that it’s ‘worth’ it, or that it’s somehow OK (because it’s not, it’s fucking awful), but that… I wouldn’t be without him. Not ever. I wouldn’t be without him, or Nora, or Emma. Or the cats. I’d shatter. We’ve spent 17 years building a life together, and cancer is doing its best to destroy that life. I do not want to let it do that. Our relationship was not perfect before this happened, but it is one of the things in my life that I am most proud of. I want to be a good husband, a good father. I work hard at being those things, harder than I do at my career or pretty much anything else I’ve ever attempted in my life. I get it wrong a lot. Who doesn’t?

I can write on here, and open up about our situation to a stranger, but I’m not always the best at talking to Em about my feelings. My dad’s not an emotional talker, and neither are my brothers (which has caused serious problems in recent years), and as unlike as we all are in many ways, we are still very alike in others. I’ve spent much of the last six months being positive – my natural, default position – and keeping it together. But what we’re going through is awful. I’m not surprised I broke. Other people have told me they’re not surprised either. I suspect it won’t be the last time. I hope it was the worst.

A word on my wife (I’m a little sad that it no longer feels so weird and funny to call her my wife instead of my girlfriend, but it has been nearly nine years), which I’ve been meaning to write for months:

She is one of the most amazing people I have ever met. And I once met Darren Day. She is incredibly intelligent, intensely capable, fiercely moral, beautiful, sexy, driven, strong, and committed. The effort she put in to ensure the kids had a great Christmas is unbelievable; I’ve barely had time to think about Christmas. The level of activity she has kept up – handling insurance claims, organising hospital visits, booking car services, renewing house insurance, washing clothes, breastfeeding and bed-sharing a baby, always, always organising, planning, researching, plus reaching out and helping other people (arranging for me to deliver food to someone in hospital; reassuring other parents of LCH kids online), booking hotels, breastfeeding on tube trains, doing a 5k run on Christmas morning – over the last six months, is astonishing. I admire her more than anyone else I’ve ever met. She is amazing.

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: www.gabysweetphotography.com