Category Archives: holiday

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