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

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7 thoughts on “The kipper and the bird-corpse

  1. Amanda Hall

    I am sitting blubbing like a true northerner. You write so eloquently, Henry and Huck are very lucky to have you and JD. Looking forward to seeing you very soon. Much love and positive energy xx

    Reply
  2. Elayne Tobin

    I don’t know you or your son at all. I know you only vicariously through Pam, and have been trying to follow Henry’s progress. But this posting was beyond true, beyond moving, beyond my ability as a writer to imagine how you are getting words on a page. Peace and strength to you and your remarkable family.

    Reply
  3. Claire Ainsley

    I think of you and your boys so much, I’m sure there are many hearts and minds with you all the time, wherever you are. I am sending you love and positive thoughts today, especially, and willing you on. I might be an atheist but I can also be wrong so I’ll have a quiet word as well! Xxx

    Reply
  4. Caroline Clarke

    To your lovely family

    You don’t really know me. I am best of friends with Alex Hartnall who used to work with John. John, Alex and I went to the Olympics together last Summer. John spoke fondly of his children. Alex told me about Henry and eversince I have been following your blog. You are all an inspiration. No comparison, but I have been unemployed due to ill health for the past year and a half and have been in and out of hospital for testing and operations. I know how emotions can be like a rollercoaster. Reading your blog and hearing how amazingly brave Henry is totally inspiring. He deserves a medal for the way in which he is coping. Living with the unknown is horrible but I strongly believe attitude is everything and that it is that which carries you through. Each blog, although only a tiny snippet, allows one to be in your lives for a moment. They speak from the heart and connect with everyone. You are a truly courageous family! I don’t live locally but if there is anything you need, I would be more than happy to try and help. Illness is daunting but inner strength can work wonders.

    Reply
  5. Nick Ravenscroft

    Hi Celia – we met through JD many years ago. A beautiful and very moving piece. I think about you all often and the ordeal you’re going through and cross fingers, say prayers, send positive vibes … anything. x

    Reply
  6. Emma Day (crazywithtwins)

    I found you on the Britmums health roundup.

    I had Acute Lymphoblastic Leukaemia aged 7, with 100 weeks of Chemo. The survival rate then, was 70%. I was told I might not be able to have children. But here I am, aged 27, Mum of three, now fighting Thyroid Cancer and running Race For Life in July. I fully understand what you say about statistics – they mean nothing, when you have been in the minority. However, To hear there has been a 20% improvement, is wonderful. Maybe soon Cancer Research will get that up to 100%. I think it is vital to remain optimistic. My mum’s optimism carried me through my treatment. I also found hearing from survivors a great help, when I was on treatment. So that’s why I’m saying hello. To help boost your hope.

    I pray that Henry’s results come back with good news and that he makes a full recovery. If you ever want to talk – You can find me on Twitter @crazywithtwins or I can DM you my email. Best of luck and healing hugs to you all. Emma xx

    Reply
  7. Elaine Livingstone (@pooohbear2811)

    its amazing where and how we find the strength to deal with these challenges life throws at us, I really admire parents whi have no other choice but to “get on with it” but also its amazing how the children take it in their stride and see it as normal, cos for them it is normal.
    Hope it all goes ok.

    Reply

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