Tag Archives: ALL

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.

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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.

Life without the Madagascar Periwinkle

It feels a bit strange to be back at Great Ormond Street after 3 months away. Henry has continued to have the weekly blood tests but there has not been much to report. This is of course a wonderful thing.

1

That’s not to say things have been event free. There was a vomiting bug which a year ago would have wound us up nicely. But Henry seemed to recover from it faster than many of his classmates and it didn’t send us into hospital.

And then there was an allergy scare in March. The doctors were worried about the low levels of oxygen in his blood. We thought he might have been allergic to one of his chemotherapies. That would have been highly unusual and bad news. Henry is getting less than the normal treatment because of the clinical trial he’s in. With a disruption to the chemotherapy, we could have been back onto the normal protocol which is much harder. That would have meant monthly vincristine and its steroid henchman dexamethasone.

Vincristine comes from the Periwinkle

The periwinkle is the source of vincristine’s oomph.

Although it’s a drug derived from the rather lovely periwinkle, vincristine’s side effects are not so charming – hair loss, muscle and joint pain, nausea.

The allergic response was to a drug he takes each week to prevent a type of pneumonia that can strike patients with compromised immune systems. The drug, Dapsone, is usually used to treat leprosy… and it did something his red blood cells were not keen on. So now Henry is back on his old foe Septrin – which he hates. But by giving it to him in crushed tablets and calling it by its compound name co-trimoxazole we’re now getting it down him.

In fact the medicine refusal has largely disappeared.

The most dramatic change has been on Henry’s hair. This has come back beautifully blond and continues to spiral out of control – to his annoyance and our delight.

We’ve been very poor bloggers. It must be 8 or 9 months since we last posted. But it is a sign that things can return to a normality that we post so infrequently.

Today Henry is in for a general anaesthetic so they can put methotrexate into his spine. I was thinking yesterday that we were getting used to this. But that’s not possible. While Henry is taking it in his stride, the prospect makes me feel distinctly queasy. Celia and I are not clasping each other for reassurance as we did when he was first put under. But there’s nothing normal about it.

2 July 2014