Tag Archives: chemotherapy

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.

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.

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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

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.

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.