Monthly Archives: May 2013

Here come the 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

Meanwhile Huck loved the climbing frame

2 May 2013

2 May 2013 – Henry on his way to his class for the first time in five and a half months

We all shouted at each other of course. We were late. Henry was refusing to finish his cornflakes and was pondering a meds go-slow. But in the end the temptation was too much.  He made it. After five and a half months, Henry went back to school this morning.

On Tuesday we found out that Henry still has some antibodies to protect him from the measles. He’s still at risk of course but the school is apparently healthy and we’re as confident as we can be that his class is well vaccinated. He’s only going for the morning – but this feels like huge progress.

He has a long way to go of course. We have a very, very significant milestone next week – a second Minimal Residual Disease test which will discover how much leukaemia is left in Henry’s blood. It will see if he’s on track to eradicate the disease. Even if that goes well then he will have another three years of treatment.

Although we have tried hard to keep taking this day-by-day, this test is a biggy and it’s nibbling away at us. We won’t know the results for a week.

But we have to take the good days when we can.  This morning felt like Henry’s first day at school ever. We tried hard not to cry. Henry seemed to take it in his stride – not delighted to be centre of attention; but not really minding it either.

The sun is shining. Henry’s with his friends.