A pink baby

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

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.