Category Archives: Langerhans

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.

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:

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.