Casper update

So he’s in hospital again tonight. I think that makes night 32 in a hospital. Chemo this morning – first dose of phase two, re-induction – but he was sick a couple of times before we took him in (straight after giving oral meds each time), and was sick again this afternoon at home (after meds again), and then his temperature spiked to 38.3.

Is it the disease? If it’s a sickness bout again (4 weeks exactly since the last one) it seems milder, and the temperature isn’t consistent with that. Is it a bug? Could be. Reaction to chemo? Could be but unlikely – he hasn’t before. Just a baby’s spiking temperature? Could be. We’d ride out a 38 temperature with Nora, give her Calpol and cuddles and she’d be fine in 24 hours. Can’t afford to do that with Casper. So we’ll see how it goes.

The port in his chest has a downside; though we can bath him and he’s not pulling at dangly plastic pipes that go into his heart, it can be awkward to access, especially if you’re in after hours and its not the most experienced nurses on duty (even the less experienced ones are great, they just don’t deal with ports etc day in, day out). Getting his port accessed and drawing blood tonight was heartbreaking. I won’t go into too much detail but I’ve spent far too much time restraining my baby son while we try and position his head and arms to allow blood to come out.

Other news: I’ve got over the need to tell every stranger (generally older women) who coos over Casper when we’re out in public that he has cancer. I’m letting him just be a cute baby, rather than a cute baby with a disease that’s going to make you cry when I tell you about it. At one point today three separate women were all cooing at him. There’s a strong urge to say “don’t prod my baby ffs he has cancer are yr hands even clean”, but when he’s not neutropenic is there any point?

More other news: remodelling the extension is practically done; just aesthetic finishings (and finding money for a floor at some stage) to tidy up, and then furniture and stuff. But we have the big L-shaped kitchen / diner / family room we always wanted, and a workable, sensible utility room too.

More other news 2: been watching a lot of Queer Eye. It feels like a proper antidote to our turbulent times. Learn to love yourself so you can love everyone else.

Post script
More other news that’s actually really significant: I went to work yesterday, for the whole day, in shirt and shoes, and answered emails and went to meetings and gave my opinion on things like I’m meant to. I also got told by my boss that I shouldn’t be back yet, which is nice; I’m lucky to work with people who are incredibly supportive and for an organisation that’s big enough and progressive enough to not put me under any pressure at all to go back – in fact the only ‘pressure’ I’m feeling at all is to make sure I look after myself as well as Casper and Nora and Emma.

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What is Langerhan’s Cell Histiocytosis?

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

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

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

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

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

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

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

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

https://www.macmillan.org.uk/information-and-support/audience/childrens-cancer/cancer-types/langerhans-cell-histiocytosis.html

https://rarediseases.info.nih.gov/diseases/6858/langerhans-cell-histiocytosis

(Almost) midnight special

Children are strange and resilient creatures.

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

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

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

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

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

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

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

Infection

Casper’s been in the RD&E for 27 hours now, which makes 29 nights out of the last two months spent in hospitals. He vomited a couple of times, but only a couple and straight after meds. His gut sounds fine. His throat is a little red, and his temperature up slightly, but coming down with Calpol. He is in good spirits. So we’re assuming this is just a minor throat infection.

We seem to have been lucky to get away without any infections so far; certainly if I were a betting man I’d have had £5 off one of the consultants the other weekend when Casper didn’t end up going in with a raised temperature. All in all this has been the least stressful, but ironically possibly the most frustrating, hospital stay yet.

A quick list of things I keep meaning to write about but haven’t yet:

• dealing emotionally with Trump and the rise of fascism in the outside world while also dealing with this
• failing to give blood because of a delay
• the imminent arrival of builders to knock down internal walls at our house
• the films I’ve watched while home alone (well, after Nora’s gone to bed each night)
• how great the team at Bramble Ward are
• how amazing our guardian angel (Helen) has been

Maybe one day.

And back in hospital…

Casper’s temperature spiked at 38 degrees at 4am, which means antibiotics, bloods, etc etc. Pretty sure it’s just the start of a cold (Nora’s had one for the last few days), but you literally can’t be too careful.

Surreal mundanity

Casper’s operation today went well: his Hickman Line was replaced with a Port a Catheter, which means no colourful plastic dangling lines from his chest, less chance of breakage (but still a chance of blockage, and other complications, as with every medical procedure), and he can even go swimming once the wound has healed. The port-a-cath sits beneath the skin and is accessed with a needle when bloods need to be drawn or medication delivered.

We need to go back to Bristol next week though for biopsies; day-case again, but another general anaesthetic.

I meant to mention transfusions in my post yesterday, and how commonplace, mundane, how desirable even, they had become. Pre this situation a blood transfusion seemed to me to be a faintly mythical, last-resort type thing, that you’d only have if you were mortally ill. Casper’s had 9 in 8 weeks now – full bloods, platelets, or albumin protein – and it’s not a big deal. They hook him up to a bag of blood via his line, and between 20 minutes and three hours (depending what and how much) later it’s finished, and shortly after that he perks up again in whatever way he needed perking. It’s amazing, and surreal how mundane it has become.

Much of this process is surreally mundane. There’s a lot of sitting and waiting. A lot of nothingness.

For a long time after university I used to think that pretty much nothing was profound. Blame philosophy modules and existential crises. I listened to Spirit of Eden the other day in the car while driving back from Bristol solo, and it did little for me – certainly not what it used to do. It was too precious, too beautiful, to really hit me. So I played The Texas Jerusalem Crossroads straight after, and that whacked me in the gut, the heart, and the head all at once. Because it worked on so many different levels, not just beauty and the sublime; humour, and pathos, and bathos are intertwined with earnestness and beauty and fury (and occasionally mundanity) to make something much more powerful overall to me now. Something much more rounded and real.

This morning Casper was sitting on Nora’s bed while we all got ready, and I was making him laugh. Em came in the room and he looked at her with such love that he unbalanced himself and toppled over onto the pillow and it was so funny and so stupid and so wonderful all at once. No experience has only one side or one tone. There is nuance and humour and joy and love even in the depths of pain.

An average day when your child has cancer

People who are tangentially aware of what’s happening with us, but not really immersed or in direct enough contact to know the full details, often seem to have very different expectations of what daily life is actually like when your baby has something like cancer. Someone asked Em a few weeks ago if Casper was conscious, as if they were imagining he was on life-support or something. He isn’t!

For instance, I took him with me today when I dropped Nora at nursery, which is on the university campus where I’ve worked for 16 years now – being the type of person I am, I know a lot of people on campus, and unsurprisingly bumped into several. Some knew what was going on to one extent or another, some had no idea; all were very pleasantly surprised to be greeted by a smiley seven-month-old baby strapped to my chest.

So what is daily life like at the moment? Here are some bullets…

• Because Casper’s on steroids, he’s not sleeping very well – also he’s a baby! – so he’s sharing Em’s bed (our bed) so she can feed and comfort him easily in the night, and I’m in the ‘spare’ room. I’ve been in the ‘spare’ room for much of the last four years, since the tail-end of Em being pregnant with Nora, so that’s not unusual.
• I wake, sans alarm, at pretty much bang on 5:55am every day. Nora comes into my room at 6:15am when the sun comes up on her clock, and watches CBeebies on my phone until she can convince me to get out of bed – usually about 6:45am.
• We go downstairs and I make breakfast for everyone; if Casper’s sleeping him and Em stay in bed, if not I bring him down with us to give Em chance to get a little more rest.
• He’s weaning at the moment, so I might give him a bit of banana to smear over his face and the table. Once a week I’ll make waffles. I make Em porridge most days. Nora has cereal, I have egg (and something – whatever’s in the fridge) on toast.
• Casper has meds three times a day: morning, afternoon and evening he has steroids, and morning and evening he has anti-sickness drugs too.
• (Chemo is once a week, usually on a Thursday, and involves a trip to the local hospital in the morning. We’re normally there a few hours while he has blood tests, the consultants and nurses check him, and, depending how he is – at the moment he is well, and not manifesting as a poorly baby really – pretty much everyone on the ward will coo over him, because he is cute as hell.)
• Other then chemo, all his meds are delivered orally, through little plastic syringes. I give him most of his meds, as Em finds it too stressful. He loves his steroid medication, but will struggle with the rest, which makes it emotionally pretty tough.
• I take Nora to nursery 2 or 3 days a week (Wednesdays and Thursdays, and Tuesdays too from next week on), so we leave at about 8am. I’ll be back about 9am.
• And then…

Beyond that there is no normal. Em and Casper have been in hospital 28 nights out of the last two months or so, sometimes for stretches of a week or more, sometimes just for a few nights. We’ve never really managed to get into a proper routine; each time we’ve been close, Casper’s had a vomiting bout and been hospitalised, and everything has gone up in the air again. Even when it hasn’t, life has been unusual – nursery was closed for most of August, for instance, and Em and I have had to figure out how to live together, how to talk to each other, how to deliver medications and organise our life with cancer, and the bits of our life that exist outside cancer too. Just getting out of the house together in the morning to walk to town can be horrific. Difficult enough in normal circumstances.

I still try and get tea on the table at 6pm every day, whether it’s the whole family or just me and Nora here. Once Nora’s in bed and the kitchen is (close to) tidy if it’s just me I’ll watch a film, or if it’s me and Em and Casper we’ll watch Queer Eye or something. (Casper goes to bed when we go to bed, because steroids.) (the last few nights he’s been delightfully cheerful and 7-month-old-odd in the evenings – there are these strange moments of baffling parental joy amidst everything else).

Tomorrow Em’s parents pick Nora up at 9am to take her out for the day, while Em and I take Casper to Bristol for an operation to replace his Hickman line, and then to have this week’s chemo on a Friday, because his line isn’t working at all anymore (hence the operation). Depending how that goes, the weekend could be spent at home, taking Nora for bike rides and helping Casper recover, or it could be spent with us apart as a family again. I just don’t know.

It’s very difficult to plan anything. Last weekend I did the first proper weekly family food shop I’d done in I don’t know how long. Luckily almost all the meals I had planned I’ve been able to make. But not the halloumi and rocket sandwiches that were meant to be for lunch today, because Em and Casper decided to meet her mum for lunch, and I tidied the garage and playroom, because builders arrive on Monday to remodel our extension – something we’d planned and taken a loan for before this all kicked off, and which was intended to make family life easier and more cohesive. Easier and more cohesive are things we need more than ever right now, so we’re ploughing ahead with it. Em and Casper will go and live with Em’s parents for the first few days while stud walls get taken down.

Casper’s treatment is going to take one or two years depending which side of the trial we go down. Maintenance will involve chemo every few weeks, and other medications pretty much every day. With luck the flare-ups and vomiting episodes will abate, and we can be metronomic with his treatment, with family life, with the pattern of each day.

But we always have to be ready to improvise, to change tack. To prevent a crisis becoming a catastrophe.

10 days

The last 10 days or so have been the hardest so far.

What happened?

Last Thursday Casper was due his chemotherapy, but started vomiting early in the morning, following quite a large vomit on the Wednesday. It was vomiting that took us to hospital in the first place, and there’s been one other bout since; each has lasted about 24 hours, and then needed another 24-48 hours for Casper to get back to his usual self. So we went in to paediatric oncology at the usual time, he vomited everywhere, and we paused chemo to get his stomach back on track.

Which triggered Thursday night, Friday night, Saturday night, Sunday night, and Monday night in hospital for Em and Casper, with Casper as ill as he’s been on the Friday and Saturday, even though the vomiting (as on the other two times) pretty much cleared after 24 hours. I remember holding him in my arms as he cried inconsolably in the cancer bedroom on the ward, his body puffy and uncomfortable, and thinking that this was what having a baby with cancer was meant to be like, this is why social workers and nurses and strangers all want to help us.

The thoughts that swim through your brain at times like this are not pleasant. Is his treatment working? What if it isn’t? What do we do now? What if…? As I’ve said before, you try and live in the now and just deal with facts, but when the facts are that he is as poorly as he’s been and you don’t now what to do, you start projecting unpleasant futures.

By Monday Casper was super happy and cheery, and pretty much back to normal size and weight (he puffs up when given fluids as his albumin, a blood protein, is usually low, so fluids leak into parts of his body that they shouldn’t), and we’d been talking about discharging him since Sunday lunchtime. But it was bank holiday weekend, and (although my memory fails as to exactly what, as I was running back and forth from home to hospital and trying to entertain / raise / bath Nora at the same time) something needed doing that couldn’t be done.

Tuesday morning I wake at 6am to a text from Emma saying that the Hickman line into his chest has broken during the night and he needs to go to Bristol to have it replaced. Trigger two days up and down the M5, nil-by-mouth, a last minute decision to repair rather than replace (so nil-by-mouth was unnecessary), hours of waiting for the gastro team, and Em and Casper finally back at home at 8pm on Wednesday night. A whole week in hospital beds. Again. 28 nights as an inpatient since that first admission to hospital in France at the start of July.

Back to nursery as usual for Nora on Wednesday, back to chemo as usual for Casper on Thursday, but a decision that his line does need replacing long term, so booked for surgery in Bristol next Friday. Plus two days of Em and I being at each others throats because we don’t know how to live together anymore, let alone live together with a baby with cancer. (From experience, after a couple of days of his we decompress and just about manage.)

I’ve not got the mental energy (or physical time) to elaborate on the emotional impact of the last 10 days. Suffice to say that it was horrible.

Generosity

The generosity we’ve been shown has astonished us. I think it’s something to do with our characters and backgrounds – we both feel like you have to earn things, that you can’t just ask for things or be offered things. ‘Just asking’ or accepting feels incredibly rude and presumptuous. We’ve talked about this a lot over the years. We were astonished when people were so generous when we got married, for instance. Now that our child is ill…

I used to give a talk at postgraduate open days about how to fund your Masters or PhD, and the thing I put most emphasis on was how to leverage charities, trusts, foundations etc that have educational missions, that there are literally organisations out there who want to make society better through encouraging education, big and small, who will give you a grant to help you learn and study. So why am I surprised / taken aback at the charities that exist to make your family life better when your child has cancer / a cancer-like disease? I shouldn’t be. I know how it works. A friend of Em’s has just finished a stint as head of philanthropy for Cancer Research, ffs! But still.

Even more than that, though, is the generosity we’ve been shown by friends, neighbours, and colleagues. Actually let’s just call them all friends now. From people baking us bread or supplying us with frozen meals to make all the toing and froing between here and Bristol easier, to people coming round with souvlaki from the local Greek restaurant, to people walking up the hill and gardening for us while we were away (and when it was so sunny and the garden was going mental), beer deliveries late in the evening, Blu-Rays of films lent to distract me, to the people who text me shit jokes, or email stories about how badly behaved their kids are being, or send me photos of interesting things they’ve seen around town that might just take my mind of it for a split second, or post empty toilet rolls through the door so Nora can make a marble run like Topsy & Tim did, or who just text to say they’re thinking of us and wishing us well. It all has a positive effect.

Beyond that there have been offers of record club meetings, board games, dinners, and bike rides to fit around our needs and timings, and even though they’ve not happened yet because we can’t really plan anything at the moment, just the offers mean a lot. Even if we can’t accept right now, please do keep offering. We will accept, and they will happen, eventually.

And then there are the internet acquaintances, the people from groups we belong to (I say ‘we’ but I really mean Em) who we’ve never met, but who turned up at Bristol Royal Children’s Hospital with bags of toys, or who gave us a baby carrier on the understanding that we’d pass it on to someone else in need when we were done with it, or the entire forum who clubbed together and made up a care package of stuff – toys for the kids, gift vouchers, chocolates and a substantial cash collection (so substantial it freaked us out) for us – plus every little message of support sent by whichever channel or platform online; people I’ve no connection with at all stumbling on my Instagram feed and commenting / messaging.

I don’t know that I’ve been very good at this kind of thing in the past for other people.

I haven’t even mentioned the healthcare professionals.

What’s the motivation behind people, particularly strangers, helping out in situations like this? Love, altruism, a sense of social good, and just being a decent human being? The little rush of good feeling you get from helping someone in a tough situation out is an important part, too – Nora and I baked a cake the other day for someone going through a similarly shitty time; the cake and thought made them feel a bit better, and the activity, distraction, and sense of doing something good made us feel better. Mutual feeling betterness is good. (Well it made me feel better; I think Nora was faintly irritated at not getting to eat any of the cake.) There’s a little spiritual insurance going on too I’m sure, especially amongst strangers; there but for the grace of god, etc etc. And that’s fine.

In fact, a lot is fine. It’s fine to not know what to say or do, and to just click ‘like’ on a Facebook or Instagram post in lieu of doing anything else. It’s fine to be faintly irritated at me for not replying in a timely fashion, or sometimes at all, but it’s also fine for me to not reply in a timely fashion or sometimes at all, because, you know, a lot going on. It’s fine to pray for us, even though we’re god-denying heathens. I don’t believe in an interventionist god but I do believe in love, and at their best I think the two are the same. It’s even fine to avoid engaging at all with what’s happening to us, because it’s horrible and who wants to engage with horrible things? Just please don’t all do that. (It’s also fine for us to be occasionally pissed at you for not engaging at all.)

I put this on Facebook back at the start of this ‘journey’, and I’m going to put it here again because it might be useful:

A year or more ago a friend – I forget who sadly – was in crisis and posted a link to something very useful about how to offer support. I can’t remember the exact article but these are similar.

https://m.huffpost.com/us/entry/520108?guccounter
http://michelecushatt.com/2016/05/17/60-creative-ways-to-help-a-friend-in-crisis/
https://goodlifezen.com/21-ways-to-comfort-a-friend-in-crisis/

Today

After various transfusions and intravenous pushes and nappy-measuring, Casper is much improved this evening; when he;s feeling well he makes a noise that I can only compare to a velociraptor from Jurassic Park, and he made that noise for the first time in a few days at about 6pm. Which is great. If he’s still improving in the morning he might even be able to come home. I feel on a little high.

Which is maybe not great? Because this is still a rollercoaster. There will be other shitty days to come. In order to deal with this situation psychologically and emotionally we’re trying to focus on living in the right now, and not to trade in ‘what ifs’. That means positive ‘what ifs’ as well as negative ones, so when you have a bad day (or three, or four) you are right in that bad day and it is difficult to see past it, because you’ve been training your brain to not think about the future.

But right now I feel like I’m getting my boy back, if only for a little while before the next trough.