Tag Archives: Henry

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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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

Oh and wash your hands too

We have of course been reflecting a lot on the death of Margaret Thatcher this week. There’s been plenty written elsewhere and I’m not going to bore you with our rather predictable views on her passing.

She was famous for a quote that appeared in Woman’s Own in 1987: “There is no such thing as society. There are individual men and women, and there are families. And no government can do anything except through people, and people must look to themselves first. It’s our duty to look after ourselves first and then, also to look after our neighbour. People have got the entitlements too much in mind, without the obligations, because there is no such thing as entitlement unless someone has first met an obligation.”

This is one of those quotes lefties like me like to use to berate her and the legacy she has left. Mostly we think she means (and of course she did mean) people need to pull themselves up by their bootstraps, get on their bike and stop using welfare as a crutch. Most people of my bent would argue she misses the point and that support for the weakest enriches the lives of all of us.

But what if we held this quote up to be used to shine a light on other situations – say those who refuse to vote, or hide their money in off-shore accounts or refuse to vaccinate their children. To make things more palatable (to my taste), you have to remove the small word “no” and then remove the two words:  “first” and perhaps “individual” and a “then”. Now you have a view I find more compelling:

“There is such thing as society. There are men and women, and there are families. And no government can do anything except through people, and people must look to themselves. It’s our duty to look after ourselves and also to look after our neighbour. People have got the entitlements too much in mind, without the obligations, because there is no such thing as entitlement unless someone has first met an obligation.”

This has been in my mind because of a tragedy unfolding in Wales that is too close to home  – the measles outbreak in Swansea.

We had hoped Henry would be able to go back to school for the start of the summer term – just a couple of hours a day at first to see how he does.  But children with leukaemia or any disease where their immune system is suppressed, are at huge risk from measles. It is, according to the World Health Organization, one of the biggest preventable killers of children in the world. Henry had his MMR; he had the booster; in fact he’s up to date with all his vaccines. Sadly none of them works. We have the leukaemia to thank for that.

Viruses spread like leaping fires. They flare in unexpected places, and school holidays and movements of people help them to move across the country. This is utterly sickening for the families of children with suppressed immune systems. When the first death or serious disability comes from measles, it will be a child like Henry. But where will they catch it? They will catch it from someone who is unvaccinated. Andrew Wakefield, the discredited charlatan, who cooked up spurious links with other childhood disorders, for his own personal gain, must bear much of the blame. But he has been comprehensively discredited. And while any death from measles would surely leave a child’s blood on his hands, parents also have a duty to wake up and smell the coffee. I am writing this as an ardent supporter of vaccination brought to us through reliable, tried and tested and tried and tested and tried and tested science. Medical research has after all improved Henry’s chances of cure from his leukaemia to above 90%. It has immeasurably improved all our lives.

Together we have achieved so much – all of us by paying our taxes, most by giving to research charities and some through careers in science and medicine. Henry is currently part of a clinical trial (UKALL2011). He didn’t hesitate in joining the trial when I explained it may at times be more difficult for him but that he would be helping children who don’t yet have leukaemia. I have a lot to be proud of him for, but that is near the top of the list. He has met his obligations.

So what about the rest of us? One of our obligations is rather simple – to try to stay well.  If you can avoid falling ill, then do it… the simplest way to protect yourself and your family and your neighbour is to get your jabs. Some people can’t. Children like Henry can’t. And they are relying on you. For medicine to work, we cannot be individuals, we have to be a society.

A new Mii

Henry announced this week that he needed a new profile on his Wii console. You are able to create a character to take part in the games that has quite a close resemblance to yourself. Henry decided it would be wrong to have his usual one as he will shortly have no hair. It took him a couple of minutes to create a character that would not be out of place in an episode of The Wire – a formidable avatar you would not want to meet down a deserted alley at night.

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Henry at UCLH

Henry admitted to UCH at midnight as the New Year arrived.

Text sent on 1 January 2013 at 7.30am: As you know Hen has not been well lately. Yesterday he had some preliminary blood tests and also developed Chicken Pox. He was sent to hospital by an on-call doctor. Hen has had an ok night – his temperature has come down and he is on anti-virals for his chicken pox. We are still waiting for some blood test results but his haemoglobin count is low so he needs a blood transfusion this morning. The docs are not able to say what is wrong but we are waiting for results from a blood film test – the important question is whether Henry has abnormally-shaped white blood cells. We are hoping not, as that would be a very serious sign. We should know later this morning.