Category Archives: Hair loss

The Sun in Flight

Wild men who caught and sang the sun in flight

And learn, too late, they grieved it on its way

It’s been a crappy week, writes Celia. For the last ten days we’ve been in and out of hospital trying to work out what’s causing Henry’s mystery symptoms. Of course, the whole hemisphere is ill at the moment, and of course Hen’s not immune to this. But swelling lymph nodes and fatigue, I do not like.

Haircut

The last time was a full shave for chemo, this time it was a light trim

JD’s assuming it’s a self-limiting virus. This means he’s at work, working; probably thinking about what to have for tea tonight, or having a barney with a Daily Mail journalist. I’m spending the day standing at the kitchen counter checking my phone’s switched on and that it has a signal, should the hospital call. They really ought to have been in touch by now – they took his last bloods at 8 this morning – what have they seen? are they in a meeting about it? are they working out how to tell us? what will happen next?

The treatment for kids who relapse at this stage is unthinkable. Will we still be able to live in London? Where will Huck go to school if we don’t? What about the new job I’m supposed to start in two weeks?

This is not the way to exist. And it’s not how we have existed for the last two, nay five years, since life got tough on our kids’ health. After Huck definitively won his battle against extreme prematurity, septicaemia and a brain heamorrhage, I had been through enough to know how to live. When you’re having a good day, have a good day. Don’t spend it fretting about the next bad one. Feel the sun on your face. Or go to work, and work. No-one benefits from you shaking and staring at your phone for hours, willing someone to phone through an answer to your anxieties. Henry’s at school and going to his Xmas party this afternoon. That should, surely, count as a good day.

I am going back to see my therapist shortly, to see whether I can learn it all again. Because, whatever’s next for Henry, living in fear is not a help. It’s been creeping up on me for a while. And I know it’s probably linked, in part, to changes going on away from the world of Hen’s health. A couple of months ago I handed in my notice to the job where I’ve been happy and secure for some time. Ever since, I’ve kept on looking up at the heavens, waiting to be punished for my hubris. Who said I could have a child in remission and a new job? Just who, exactly, do I think I am?

My sister noticed I wasn’t myself on our half-term holiday in October. She pointed out to me that I was acting much more worried than usual. I know she was right because of the humungous number of shots I took of Henry on that holiday– the same picture, over and over again.

In the first few months after Henry went into remission, I took thousands of pictures. Multiple shots of the same scene, over and over. And I can’t delete them. I agonise over deleting even just one, in order to make room for more. What if we lost Henry, and what if Huck had to live with a fading memory of his beloved brother? What if I somehow inadvertently deleted the shot that would convey the essence of Henry – the one where he was flashing us an important message with the sole of his foot, or the back of his neck?

I have many, many shots of Henry on the beach from a sunny day in Majorca in October.

Majorca

Not quite getting the fullness of him

The sun was in his hair and I needed to trap it there. I clicked and clicked and couldn’t capture the way his curls catch and reflect the sunlight.

I know what I’m trying to do. Hence, the Dylan Thomas quote above. You can catch and sing the sun in flight, but you mustn’t learn, too late, that you were actually grieving, rather than singing, it on its way.

And the problem with trying to grasp and pin down the world every minute, is that you miss it in flight.

lock of hair

Curl

I took Henry for his first hair-cut (since it grew back after chemotherapy) last week, just after all the mystery symptoms came and our most recent run of hospital visits started. I couldn’t face the idea of it coming out again for more chemo, without having enjoyed one normal barber’s trip. I cut off a curl before we left. It’s in a paper package in a cupboard. It’s frozen in time, and it hasn’t done the job at all.

The sun is on Henry’s curls on his head, up in the playground at school right now.

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

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

A new Mii

Henry announced this week that he needed a new profile on his Wii console. You are able to create a character to take part in the games that has quite a close resemblance to yourself. Henry decided it would be wrong to have his usual one as he will shortly have no hair. It took him a couple of minutes to create a character that would not be out of place in an episode of The Wire – a formidable avatar you would not want to meet down a deserted alley at night.

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