Category Archives: Leukaemia

Are we trying to beat childhood cancer?

Henry is on old medicines. That is, they were developed a long time ago. We’re lucky in that mostly they work. Over the years, their combination and use has been tested and tweaked.

And now Henry, as part of the clinical trial UKALL2011, is helping to tweak the treatment further. This trial is about reducing the levels of poison needed to beat this childhood cancer.

Henry with Huck at nursery graduation 2014

Henry with Huck at nursery graduation 2014

These treatments have long-lasting effects; so striving to improve them is hugely important. The idea is to make the rest of H’s life and the lives of future children with leukaemia better.

I’ve wondered for some time why the medicines have been around so long and why new treatments have not appeared. This documentary helps to explain.

I’m delighted the excellent BBC documentary team at File on 4 have shone a light on this. Now it’s time for politicians, mandarins and industrialists to act.

Kill two birds with one stone: you could always download the podcast and listen to it while giving blood.

Yellow hair

AS Byatt's 'A Dog, a Horse, a Rat'. Published in the TLS, May 24 1991.

AS Byatt’s ‘A Dog, a Horse, a Rat’. Published in the TLS, May 24 1991 found in Westminster Reference Library.

At a spa hotel today (writes Celia) and child-free, we are tucking into the papers. A Times interview with AS Byatt moved me to heaving sobs on my indoor sun-lounger earlier. She lost a little boy to a drunk-driver 40 years ago. The article quotes her rare and ungooglable poem, ‘a Dog, a Horse, a Rat’ (inspired, of course, by Lear’s cries at the loss of Cordelia) :

“But I have heard what they said
As they remade my life
With their plain ‘He is dead’
None of my breaths since then
Is easy or is sure
Nothing I think or hear
Without ‘thou’lt come no more’
…My skull contains the lost
Breath of your yellow hair
Of your burned yellow hair’

I’ve never read or heard the poem before but I knew it in my bones. And it dawned on me that I read Byatt’s Posession not long before Henry was born. There is a line of verse in it that is about yellow hair. And as Henry’s endless tufts of blond started to sprout, they were always yellow to me. I often talked to him about his lovely yellow hair. The first bits of fluff are appearing again since his last bout of knock-down, drag-out chemotherapy. Byatt’s words reminded me how profoundly lucky we are that his yellow hair is not lost, and this week he reached his seventh birthday. She is speaking tomorrow at the Cheltenham Literary Festival, and we are staying for the weekend, as luck would have it, near Cheltenham. I think we may be packing up tomorrow to go and see this wise, wise old woman.

So near, and yet so far from the end

I made some notes last Wednesday. Sorry it’s taken a week to post:

________________________________________________________

07.00 Henry snoozes while we dress him. It was a reasonably late one again last night. I’m no longer sure if that’s drug side effects or lax parenting. I’ll go with side effects!

07.15 Taxi to Gt Ormond Street. Henry tells jokes on the way – of them, my favourite is: “What’s brown and sticky?” The nice and dry pause: “A stick.”

07.45 We’re not the first to arrive.

Weigh in

H seems to really enjoy this today. He’s being a real scamp.

Weigh in, blood pressure, blood oxygen levels, temperature, height check.

08.00 Allocated a bed and off we go.

Waiting.

08.20 Checks by nurse consultant. Reflexes, last eaten when? are you well? searches for leukaemia hiding near lymphs.

08.40 Anaesthetist visits.

09.00 Corridor cricket and football.

09.30 Cbeebies

09.45 We’re ready for you.

10.00 I’m waiting for Henry to wake up from the procedure (methotrexate into his spine to stop the leukaemia spreading to his CNS). It’s taken longer than usual for him to wake up which is a bit unnerving. An hour ago, we were playing football in the cubicle on the ward… Now he’s refusing to wake up. The last time I went to check on him the nurse offered to wake him; but last time they brought him round unnaturally he responded violently. Let sleeping dogs lie.

10.10 Still waiting. Once Henry wakes, we’ll pick up his chemo for the next week and head home. Just another round of Cytarabine; some more vincristine, a jab of Asparaginase and we’re into maintenance.

10.15 Still no sign. A young teenage lad has arrived and is encamped on the other side of the cubicle. His mum and two mates are here too. The nurse consultant is looking into his eyes and checking his spine. Lord knows what he’s been through. But he’s calm and polite and unruffled. If only Kipling had spent time here, If may have been even better.

All the meds have taken their toll again. Last week Henry’s hair fell out pretty quickly. But second time round it caused less of a stir. Henry couldn’t give two hoots. But the steroids have fattened him up. He usually has the frame of a racing snake (to quote his Uncle Jim) but he has now definitely bulked up. His face has changed shape too. There’s something other-worldly or surreal about this stage. We can see the end of the intense phase but Henry is still in the midst of his big, big medicines.

10.25 And here’s a timely illustration of the surreality – he’s back now from the procedure and awake. Each procedure carries risks and worries so it’s an enormous relief when he reappears. But he’s really very cross and I’d love him to go back to sleep. (Thankfully that’s what he’s currently trying to do.) And fortunately there’ve been no thrown punches this week.

10.45 He’s just really gathered himself and has shaken off the post op anger. Henry hates the mood changing effects of his medicines and fights hard to overcome them, although sometimes they’re too much for him.

11.00 Munching. Wait for the chemotherapy we have to take home. Four doses of Cytarabine (to be “pushed” into the port and a syringe full of Asparaginase (a jab into his muscle).

12.00 A nurse comes to lock Henry’s port. He stays accessed because of the forthcoming Cytarabine. But they flush the line (stuck into his chest) with saline and “lock” it with the anti-coagulant Heparin.

12.30 Home by taxi (public transport still banned). That was (unusually) speedy.

Heading home

Heading home

Big girls and benefits (a post from Celia)

Safari ward corridor cricket at Great Ormond Street Hospital

Safari ward corridor cricket

Hello Team Henry. Sorry for the long silences and then a barrage. As you may know if you read JD’s posts, we’re right in the eye of the storm again, and it sort of makes you want to ‘write the f*** out of’ it, to paraphrase the great Caitlin Moran.

Hen’s being fab. His wee is bright red, his hair’s about to fall out again, his face is starting to swell because of the steroids, and he’s a complete hoot about it all. As anyone who read my overly-emotional Facebook update this morning will know, I’m knocked over by him, humbled and proud.

I forgot to mention Henry's new handsome hospital tutor

I forgot to mention Henry’s new handsome hospital tutor

And I’ve got a raging hangover – we have a few friends who have an uncanny knack of knowing exactly when we need to blow the cobwebs away with booze and good company, and we saw some of them last night. Hangovers make me verbose (more so than usual) and emotional, so be warned.

There are a few things I want to write about today, but they all come roughly from an empathy/admiration sort of place.

So firstly, we’ve felt very vulnerable a few times this year. I’d forgotten what it’s like to feel very vulnerable. To be honest, I think most middle-class urban dwellers rarely have occasion to feel vulnerable, and I’ve had almost two decades of urban middle-class dwelling. Apart from the nightmare we had when Huck arrived 13 weeks early, we’ve mostly lived in the bubble.

Hen’s in a clinical trial, and a few weeks ago we learned he’s been randomized to the treatment arm that’s untested. This made us think hard – can it possibly be right to put your beloved child through an untested treatment regime when they’re battling a frightful disease that may kill them? Can it possibly be right to pull out of the trial when you get into the slightly riskier group? If everyone did this there would be no medical trials, there would be no progress, and leukaemia, along with all other cancers, would claim the lives of all its victims.

That’s a real bugger of a decision to make, and we felt vulnerable. The only way we could deal with the situation was to do what all vulnerable people have to do – put your faith in the people and the institutions that are there to help you, and hope. So we’re still in the trial.

Oddly enough, it’s focused my mind on the benefits cap. The one that means quite a few vulnerable people in our neighbourhood and beyond will have to leave their homes and communities to live somewhere more cheaply. I learned a lot in the few years in the 90’s when I worked on what was then termed ‘Britain’s worst housing estate’, and I have been following the benefits cap with interest. I can see the sense in trying to lower the cost to the taxpayer given the sort of rents private landlords are charging to house people on benefits in London. There are plenty of better places the money could end up than in their pockets. It’s very hard to know what policy levers to pull to solve historic, chewy problems like this. But it’s fairly clear to most people that this is the wrong one.  There must be a less appalling solution.

What amazes me is that, until our recent stint of vulnerability, I was only mildly cross about it. Now I’m bloody furious.

Like many people I was pretty far to the left in my youth but gave up socialism when I started to live and work and get a better appreciation of how complicated life is and how little room there is for any dogma. But the lack of vulnerability we’ve ‘suffered’ from over the last couple of decades seems to have taken the edge off my ability to empathise effectively with people whose lives are very, very different from mine, and that’s not a good way to be. So while of course I’d much rather Henry was nowhere involved in the hard life-lessons JD and I are again being taught as parents, at the very least, we’re learning stuff and re-learning stuff we’d forgotten.

Next up is sort of about empathy, but mostly admiration.

When you’re a little girl you need to watch the bigger girls to learn how to behave. It’s one of the great joys of life. I’d never have thought that when I got to 40 and was someone’s Mum I’d still need to look at the bigger girls to know how to behave, but I damn’ well do. I think a lot these days about two people – a good friend who was a most excellent boss to me when I was 23 (back on Britain’s worst housing estate, in fact). I’ve spent the following 17 years of my career trying to be like her at work, but she’s also the big girl I often think of when I’m trying to handle what life’s throwing at me at home at the moment. Her name is Katie. She’s amazing, and you can read some of her wisdom here (this is an article about the loss of her baby son James).  She’s had to face some dreadful life experiences. And she has kept on living, kept on contributing everything she has, has kept her sense of humour and is bringing up two amazing kids who have been very kind to Henry.

The other person is my Aunty. She’s well into her eighties now. She also lost her son, when he was 9 years old. He died a few days before she gave birth to her fifth child. She kept on, she never forgot him, and she was and is a great mother to her other four kids.

I suppose they’re on my mind a lot because the horror of losing your child is something that’s very difficult to grasp and I can’t imagine what it’s like. But I’ve tried a few times over the last few months and it makes me think of Katie and Aunty K with increasing amazement and wonder. They are fantastic big girls to have in your life, and I owe them both a debt of thanks for many reasons. Not least as they have given me some vital clues about how to live when you’re struggling to keep the show on the road.

Anyway, I think I should stop there. It’s a lazy Saturday. And I just overheard this, so I’m off to join in the conversation:

Henry: “Dad, you know what people say is the most powerfulest thing in the world?”

JD: “Love?”

Henry: “No! The tip of a pencil!”

JD: “Henry, that’s great.”

Henry: “But Dad, they’re wrong. It’s my medicine that’s the most powerfulest thing in the world.”

Leukaemia’s summer cocktails

We’ve been thinking a lot about side effects recently.

Henry has just begun a new stage of treatment: delayed intensification.

Henry starts his dex again

Henry starts his dex again

And as the name suggests, it means a lot of medicines. For this stage we’re joined by some old “friends”: dexamethasone, vincristine, asparaginase, cyclophosphamide, cytarabine, mercaptopurine, methotrexate as well as a new one: doxorubicin. (After a complete refusal of the synthetic banana-flavoured antibiotic septrin, Henry is now happily taking dapsone as well as the anti-viral aciclovir.)

Henry and Celia had a morning broiling yesterday at Safari Ward on the ninth floor at Great Ormond Street. It’s not a ward well suited to the current sunny spell as it gets very, very warm. Henry was in for his intrathecal methotrexate (a chemotherapy injected into his spine under general anaesthetic). I joined them as I wanted to talk to Henry’s consultant about the side effects of all these medicines. Ironically, our discussion was interrupted by Henry who reacts strongly when he wakes up after anaesthetic, and violently when the strong steroid, dexamethasone, is thrown into the mix. He was rage-filled and not to be reasoned with. He was bleeding. He had injured himself after falling off his scooter last week. And the scabs opened up when he hit his mum. After I was dragged from the consultant’s room, I got a quick punch in the face.

Dex also brings on a big appetite

Dex also brings on a big appetite

I’m writing this because it demonstrates the strong side effects these drugs can have. Fortunately these violent, character changing ones are short term and they do not last long. Henry calmed down quickly and was able to come home.

It’s the side effects you can’t see immediately, and those side effects that may not come for years that are more of a cause for worry.

A couple of weeks ago I stumbled across a supplement to the scientific journal Nature. This special – Nature Outlook – focuses on leukaemia.

There is a superb video, which is part of the online supplement, and I would urge anyone to watch it:

http://youtu.be/kmAUYKledZg

There was also an article that brought home the brutality of the leukaemia treatment regimen for children: Drug safety: double jeopardy. It left me speechless and drained (here is a warning: if you have stumbled on this blog because your child has leukaemia – think carefully before you read the Nature piece. It is hard going). The article focuses on the long-term side effects of the leukaemia treatments. They are manifold, serious and unpleasant. They include other cancers and heart disease. And as ever with leukaemia, you are playing with odds you would not choose. It reminds me that we are, as cheerfully as possible, asking Henry to take medicines that could cause him huge problems in his adult life. They might not. They might. The enormity of this disease is staggering. And our ignorance is terrifying. It should be noted that the most serious effects in the article relate to people who were treated as children and are now in their forties and fifties. And as the protocols and treatments are refined the long term outlooks will change and improve. They are certainly very different for Henry than for a child being treated 40 years ago. But his treatment is a balancing act and it is uncertain. The doctors have to weigh up the risks of the drugs with their benefits – and reduce the toxic effects where they can. This is one of the aims of the trial Henry is part of.

Yet the contrast is remarkable between our fretfulness over this unseen future and our admiration of how Henry is handling the treatment now. Apart from his response to the dex and anaesthetic, he is a cause for huge optimism.

People continue to say to us that apart from his pallor and his thin hair, it would be difficult to tell he is sick.

The boys ride on Bournemouth pier

The boys ride on Bournemouth pier

Last week, we managed a week’s holiday in Dorset during a break in treatment. Henry swam for the first time in six months, he played in the sea, and he took his meds. And on the last day of his holiday he picked up the grazes I mentioned earlier – the kind that all children should sustain. He fell off his scooter while careering down one of Bournemouth’s sloping chines that lead to the sea. It all came from the growing normality mentioned in the previous post.

Whatever happens over the next few weeks we know that in September, Henry will move onto maintenance – two-and-a-half years of one daily and one weekly chemotherapy as well as quarterly intrathecal methotrexate.

It won’t be plain sailing and it won’t be easy. But if all goes to plan, it will be better.

Playing in the sea at Bournemouth

Playing in the sea at Bournemouth

Henry’s run

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Ironman enjoys a biker weekend

A kind of normality is nosing its way back into our lives. We have to stop and reflect on it. But despite obvious and loud setbacks, it is quietly and rather confidently appearing.

We had a wonderful weekend. On Saturday, we packed up the car and headed off to Watlington – an upmarket and rather lovely village in Oxfordshire where we joined a large and jolly group of our friends from Tufnell Park on a campsite.

You always know things are going to be alright when you get presented with an opened bottle of beer when you step out of the car.

.

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Huck enjoys a magnificent packet of crisps. Life’s not too shabby.

Henry disappeared into the field with Huck and his mates and we fell in with our friends. We all occasionally reconvened.

But the normality of the weekend struck home the most. There was rain, enormous piles of barbecued red meat, beer, and laughter. It was joyous.

Then this morning Henry was accessed. First thing, I woke him up and stuck a kind of bandage with cream squirted onto it over his port. The port sits just under his skin on the right hand-side of his chest. The cream, known as EMLA, is an anaesthetic and numbs the skin. There were no real histrionics. After a bit of pantomime grumbling from both of us, the job was done.

About an hour later, Diane, one of the lovely community nurses, came to the house and “accessed” him. That is, she put a needle into the port with a tube attached to it. Thanks to the EMLA cream, it’s a reasonably painless way of taking blood samples and giving Henry most of his medicines. Henry usually stays accessed for a few days. This week, they’ll give him two lots of chemotherapy and an anaesthetic through it. The remarkable thing about Henry is that being accessed doesn’t really bother him.

Henry enjoys a muggy run

Henry enjoys a muggy run

Today, he went off to school where he found out the other children were all doing a fun run to raise money for play equipment and improvements to the playground. Although Henry is on quite a strong part of his drug regimen, he insisted on taking part.

He notched up about a kilometre in the 20 minutes set aside for the run. I’ve no doubt he would have gone further if time allowed. Again, there is a normality to this that brings almost overwhelming relief.

But it’s not all a paradise of normality. The payback has been a huge heel-digging, mule-headed refusal to take his weekly antibiotics. Lately Henry’s bedtime has slipped, there hasn’t been a single night in the past three months where everyone stayed in their own bed. Our routine has collapsed. But instead of fretting and gnashing our teeth and wringing our hands, we have decided to be calm. We will get through. We are re-setting.

We are convinced that Henry links the meds he refuses with his leukaemia more than anything else. He’s been taking them almost since the day he was diagnosed. And he will have to take them until his treatment finishes in May 2016.

And while some normality returns, there is this weekly presence of the sickly Septrin that rings out Henry’s illness. Its regularity reminds us how long it’s been and gives a sense to Celia and me of how far we have yet to go. Small wonder Henry rebels. Good on him.

But he has to take the medicine because it’s saving him from a nasty pneumonia called PCP – the bacteria infects most of us; but only attacks the weakest. Notably people on chemotherapy or living with AIDS. To encourage Henry to take it, we are insisting on more normality. Henry will go to school more, we will go out to play with friends, we will go to work, we will reclaim our lives.

Then hopefully Henry will be able to overcome his weekly hurdles. Foul as they are, they have to become normal.

Here come the Hakken-Kraks

Image

Hakken-Kraks
copyright: Dr Seuss
click to watch the animated story

“On you will go

though the weather be foul,

On you will go

though your enemies prowl,

On you will go

though the Hakken-Kraks howl.

Onward up many a frightening creek,

Though your arms may get sore

and your sneakers may leak.”

–      Dr Seuss: 

Oh, the places you’ll go! 

We had a big decision to make last week. I mean a real doozy.

The good news was that we had a decision at all. Had things not gone well with the last MRD test our options would have been looking grim. This was a test to find out the extent to which Henry’s leukaemia was in retreat by looking at the “minimal residual disease”.

The news came while I was sitting in a conference listening to a pollster explaining what the public thought of the NHS. I imagine what he said was largely positive but I can’t tell you as I spent the talk speaking first to Great Ormond Street and then to Celia and then unchoking myself.

Henry is not considered to be at high risk from his disease. He is intermediate risk. These hardly appear to be consoling words. But they spelled the difference between a defined three years of chemotherapy (the path we are now on) or a much more aggressive treatment with the likelihood of a bone marrow transplant with the months of quarantining, uncertainty and heartache that would have brought with it. This is not a choice you would ever want but that’s one of the reasons why this serious disease is serious.

So here we are – three years to go. We know the treatment end date in May 2016. Henry will be nine. But first we face an enormous dilemma: Henry was placed randomly by a computer into one of the arms of the clinical trial he is taking part in. There are four arms… three compare existing treatments, the fourth tries an untested regimen.

First, the American model: Patients are given high doses of a chemotherapy called methotrexate, where they spend several days each fortnight in hospital. They are monitored and then “rescued” from the poisonous effects of the drugs. Then later they are given “pulses” of the steroid dexamethasone and vincristine for a couple of weeks. Both have nasty side-effects. “Dex” as it is known causes big mood swings, hunger pangs and leg pain; vincristine also hobbles the children and causes their hair to drop out.

Second, the German model: This is similar to the American treatment plan but without the pulses of dexamethasone or vincristine.

The third is the British model: Known as Capizzi, this sees the chemotherapy increased gradually until the patient can just tolerate it. The advantage is there is no need for a rescue and therefore no scheduled hospital stays. But it is followed as with the Americans by pulses of Dexamethasone and vincristine.

The fourth is untried: It combines the British and German models. Patients are treated on the Capizzi regimen but they don’t have the pulses.

Guess which one Henry’s on?

Of course he is.

The one arm that we knew would cause us the most soul-searching and uncertainty: the fourth on the list – the untried model. We have decided to keep Henry in the trial. But we genuinely don’t know and cannot know if we have made the right decision. We can change our minds at any time and revert to the usual protocol: Capizzi with pulses.

Henry is currently being given methotrexate into his spine and through a drip. He’s getting the old leukaemia starver asparaginase (injected into his leg) and vincristine (intravenous) the drug that tightens his leg muscles and makes his hair fall out. But he will not have the later pulses of vincristine nor the dex.

So why the quandary? Not only is Henry in the untried model, it is the one where he appears to get least treatment. Sure he will also get the least toxic treatment, but will it be enough to see off the leukaemia for good? The problem is that with the German model treatment is aggressive from the start, whereas Capizzi increases over time. So with the German model, at least you’ve given the leukaemia a good blasting right from the start even if you then take away the pulses. With the untried model, the attack on the leukaemia ramps up. Is the tried and tested Capizzi model successful because the later pulses see off the disease? What happens if you take away the pulses? By keeping Henry in this trial, are we exposing him to unnecessary risk?

Henry does some hurdling

Henry has been coping really well with his chemotherapy. This weekend he charged about with his cousins and relived the Olympics.

I’m acutely aware that we are not in possession of all the facts – not least because we do not have the years of training to fully understand them. Without that we have to have trust and faith.

These trials take years to develop.  They are examined minutely by ethics committees and trial management committees. They are simply not allowed to proceed if the experts think there is an increased risk to the patients. But how can there not be an increased risk in an untested regimen?

We have grilled the consultants and nurse consultants and researchers… and we will do so again. There should be no inference that our consent is not informed. It is. But in the end this is a decision about trust and faith. Do we trust the medics, researchers and ethics committee and trial framers and scientists enough?

These are the people who have successfully increased cure rates from childhood leukaemia to above 90%. These are the people who are behind possibly the biggest success story in cancer research and treatment. Without the families of children, like Henry, being prepared to trust them, without children taking part in clinical trials, leukaemia treatment would not be so successful.

This is quite easily the single toughest decision we have ever, ever had to make. And I hope we never face anything so challenging again. You may well think we have made the wrong call… but trust in our researchers and trust in the scepticism of the people who reviewed this trial and the systems of review are important.

I hope we have made a reasoned and reasonable decision. The costs of the wrong call are unbearably high. But so is the cost of people not taking part. Again it comes back to the old refrain – we are a community. We have learned to have faith in it.

And that’s coming from a pair of atheists.

The kipper and the bird-corpse

This was always going to be a ruddy awful time.

Tomorrow Henry has his second MRD test. MRD stands for Minimal Residual Disease. The test starts with the docs at Gt Ormond Street taking a sample of bone marrow under general anaesthetic. Bone marrow extraction is a procedure Hen has quite regularly, and while the after-effects are painful, it’s the anaesthesia he hates. He always fights when he realises he’s about to go under, limbs flailing like a cartoon character who has run off a cliff and just looked down. JD and I are allowed in to theatre until he goes to sleep – we wait as Hen yells and shouts, scowls at us over his oxygen mask, and then zonks out. We are getting increasingly blasé about this – the first time we waited outside the room throughout the op, clutching each other and shaking. More recently we’ve kissed Hen’s furry head and gone off to wait at the nearest available source of non-vending-machine, hand-roasted, preferably Monmouth Coffee. Even under duress, we are Grim Up North London-types.

It's cosy at our back door

It’s cosy at our back door

But we don’t feel at all blasé about the test and the results. After the docs get this lot of bone marrow they’ll send it off to a lab in Oxford where scientists will get to work fishing through strands of DNA to see how many leukaemia cells are still hanging around. Last time, the answer to this question was ‘too many’, at which point Hen was moved from the mildest to the most aggressive treatment regime. This time there is no further drug regime option. And I’m not going to verbalise what may happen if the results show that the leukaemia hasn’t been cleared this time. Last time the test results took three weeks to come through, which is a long time. During the wait people rightly told us that knowledge is power, and it was the not knowing and waiting that were killing us. But on this occasion we could happily wait for ever.

We had planned to spend this week away as it was originally scheduled as a break in treatment. The MRD put the kibosh on that, but we have just had a wonderful long weekend in a lovely old house in Burnham Market, Norfolk. The house was lent to us by some very kindly Tufpark friends and it’s been a weekend full of our favourite things – beaches, pooh sticks, kippers for breakfast*, fish, chips and beer. Henry and Huck are dog-lovers, meaning we spend a great deal of time talking to strangers with dogs on our travels. Henry’s bald head invites lots of polite aversion of the eyes from strangers, prompting my need to explain loudly and with a big reassuring smile that he has leukaemia (‘it’s OK to say it – see, I just said it – loudly! Smiling! And I’m his mother! How about that?!’) to save any embarrassment on the part of said strangers. I’m like a reverse Blanche Dubois.

Older people tend to greet the news with expressions of sadness – for their generation childhood leukaemia almost never had a happy ending. People of our age are more likely to talk about how fantastic the prognosis usually is these days. And indeed it is. Most families in the last few decades who have been through this have, thank the gods above, taken part in clinical trials, with the outcomes improving on almost each round. For this reason, alongside a fantastic collaboration of medics across the globe, the outcomes of childhood leukaemia are now great, as far as cancers go. Around 90% of kids with this diagnosis will recover. But prognosis (a Greek word – meaning fore-knowing – only you can’t know how things will turn out) is based on large-scale statistics, and if you’ve already been on the wrong side of the stats, they give you little comfort. Only 400 kids a year in the UK get what Henry’s got. But here we are.

As always, there’s a soundtrack in my head, but at the moment it has only one song on it – playing on a loop. It’s Running Up that Hill by the awesome Ms Kate Bush. Anyone who’s had a loved one in peril will know the constant thought of a deal with God that involves swapping places. While I have eschewed the god I grew up with (the Graeme Greene-style RC one) I still find myself offering illogical deals – assuming there is some appalling strangeness to his mercy.

Huck relaxes in his incubator

He’s much, much bigger now

Back when Hucky was born extremely prematurely, Aunty Sue came to see him in hospital and remarked ‘he looks like a baby bird that’s fallen out of its nest’. The metaphor was so apt that I almost fell over. That Spring, a baby bird duly fell out of its nest in our garden, causing me more worry than I had ever thought possible in such situations. So much so that JD insisted that, while I was out toward the end of the day, he had born witness to its mother coming and helping it learn to fly from the ground (I know, I know) – causing much blubbing and mistrust when I later found its tiny body in the compost bin, where JD had thought I wouldn’t find it. While the early birth and sometimes near-death of Huckleberry was too much to consider after the event (my therapist is making me talk her through it all right now) we were able to live out some of the drama when faced with a baby bird.

And when we went away to Norfolk this weekend, our new and much-loved neighbour, a female robin, was sitting on the nest she painstakingly built this Spring just outside our living room window in Tufnell Park. The eggs hatched the morning we went away, causing me much concern about the babies. My sister has been kind enough to drop by every day while we’ve been in Norfolk and check all is well – no-one seems to have fallen out, and no cat seems to have torn the nest down. We have returned home to the squeak of four tiny yellow beaks, which is delightful. My main preoccupation now is the fervent hope that the babies will survive to fly the nest.

OK, OK. My metaphors were never subtle, and are getting very stretched. I’d better leave it there.

As always, thank you to all those who have helped us so far. And they have been many. The kipper-asterisk above should say to our kindly friends C and K, should they ever read this, that we only ever cook kippers with the doors and windows open. Thank you to our families and friends, and our employers, and Henry’s school. And as always, the lovely National Health Service. And also as always, we owe a big thank you to Henry and Huck, who are bearing all of this better than we could ever have expected or asked.

Henry and Huck

Henry and Huck have become a very supportive team