Monthly Archives: July 2013

Big girls and benefits (a post from Celia)

Safari ward corridor cricket at Great Ormond Street Hospital

Safari ward corridor cricket

Hello Team Henry. Sorry for the long silences and then a barrage. As you may know if you read JD’s posts, we’re right in the eye of the storm again, and it sort of makes you want to ‘write the f*** out of’ it, to paraphrase the great Caitlin Moran.

Hen’s being fab. His wee is bright red, his hair’s about to fall out again, his face is starting to swell because of the steroids, and he’s a complete hoot about it all. As anyone who read my overly-emotional Facebook update this morning will know, I’m knocked over by him, humbled and proud.

I forgot to mention Henry's new handsome hospital tutor

I forgot to mention Henry’s new handsome hospital tutor

And I’ve got a raging hangover – we have a few friends who have an uncanny knack of knowing exactly when we need to blow the cobwebs away with booze and good company, and we saw some of them last night. Hangovers make me verbose (more so than usual) and emotional, so be warned.

There are a few things I want to write about today, but they all come roughly from an empathy/admiration sort of place.

So firstly, we’ve felt very vulnerable a few times this year. I’d forgotten what it’s like to feel very vulnerable. To be honest, I think most middle-class urban dwellers rarely have occasion to feel vulnerable, and I’ve had almost two decades of urban middle-class dwelling. Apart from the nightmare we had when Huck arrived 13 weeks early, we’ve mostly lived in the bubble.

Hen’s in a clinical trial, and a few weeks ago we learned he’s been randomized to the treatment arm that’s untested. This made us think hard – can it possibly be right to put your beloved child through an untested treatment regime when they’re battling a frightful disease that may kill them? Can it possibly be right to pull out of the trial when you get into the slightly riskier group? If everyone did this there would be no medical trials, there would be no progress, and leukaemia, along with all other cancers, would claim the lives of all its victims.

That’s a real bugger of a decision to make, and we felt vulnerable. The only way we could deal with the situation was to do what all vulnerable people have to do – put your faith in the people and the institutions that are there to help you, and hope. So we’re still in the trial.

Oddly enough, it’s focused my mind on the benefits cap. The one that means quite a few vulnerable people in our neighbourhood and beyond will have to leave their homes and communities to live somewhere more cheaply. I learned a lot in the few years in the 90’s when I worked on what was then termed ‘Britain’s worst housing estate’, and I have been following the benefits cap with interest. I can see the sense in trying to lower the cost to the taxpayer given the sort of rents private landlords are charging to house people on benefits in London. There are plenty of better places the money could end up than in their pockets. It’s very hard to know what policy levers to pull to solve historic, chewy problems like this. But it’s fairly clear to most people that this is the wrong one.  There must be a less appalling solution.

What amazes me is that, until our recent stint of vulnerability, I was only mildly cross about it. Now I’m bloody furious.

Like many people I was pretty far to the left in my youth but gave up socialism when I started to live and work and get a better appreciation of how complicated life is and how little room there is for any dogma. But the lack of vulnerability we’ve ‘suffered’ from over the last couple of decades seems to have taken the edge off my ability to empathise effectively with people whose lives are very, very different from mine, and that’s not a good way to be. So while of course I’d much rather Henry was nowhere involved in the hard life-lessons JD and I are again being taught as parents, at the very least, we’re learning stuff and re-learning stuff we’d forgotten.

Next up is sort of about empathy, but mostly admiration.

When you’re a little girl you need to watch the bigger girls to learn how to behave. It’s one of the great joys of life. I’d never have thought that when I got to 40 and was someone’s Mum I’d still need to look at the bigger girls to know how to behave, but I damn’ well do. I think a lot these days about two people – a good friend who was a most excellent boss to me when I was 23 (back on Britain’s worst housing estate, in fact). I’ve spent the following 17 years of my career trying to be like her at work, but she’s also the big girl I often think of when I’m trying to handle what life’s throwing at me at home at the moment. Her name is Katie. She’s amazing, and you can read some of her wisdom here (this is an article about the loss of her baby son James).  She’s had to face some dreadful life experiences. And she has kept on living, kept on contributing everything she has, has kept her sense of humour and is bringing up two amazing kids who have been very kind to Henry.

The other person is my Aunty. She’s well into her eighties now. She also lost her son, when he was 9 years old. He died a few days before she gave birth to her fifth child. She kept on, she never forgot him, and she was and is a great mother to her other four kids.

I suppose they’re on my mind a lot because the horror of losing your child is something that’s very difficult to grasp and I can’t imagine what it’s like. But I’ve tried a few times over the last few months and it makes me think of Katie and Aunty K with increasing amazement and wonder. They are fantastic big girls to have in your life, and I owe them both a debt of thanks for many reasons. Not least as they have given me some vital clues about how to live when you’re struggling to keep the show on the road.

Anyway, I think I should stop there. It’s a lazy Saturday. And I just overheard this, so I’m off to join in the conversation:

Henry: “Dad, you know what people say is the most powerfulest thing in the world?”

JD: “Love?”

Henry: “No! The tip of a pencil!”

JD: “Henry, that’s great.”

Henry: “But Dad, they’re wrong. It’s my medicine that’s the most powerfulest thing in the world.”

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