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.

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.

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

Is this discrimination against a cancer patient and his family? It feels like it.

Don’t judge a book by its cover

*UPDATE – this has now been resolved with profuse apologies from the hotel*

Here we report on the Iberostar Grand Hotel Mencey in Tenerife.

This morning this hotel reduced Henry to tears. That’s not easy to do. He has had needles thrust in his chest, regular injections in his spine, he has had high levels of vein-dissolving chemotherapy, he has had blood and plasma transfusions, he has had his hair burnt out by his medicine. He has had disfiguring steroids that have swollen his face and body and others that have made him unable to run, sometimes even to walk. He has fought all this with as much patience as he can muster, which is a lot. He has not faced meanness until today. It was the meanness that brought on the tears.

Today he tried to go for a swim with his brother in our posh hotel – the Iberostar Grand Hotel Mencey. He’s a guest here. His bed did not come cheap. But we’ve had a very hard year and this is Henry’s first big holiday since he was hospitalised on New Year’s Eve 2012. The hotel decided we could not. Henry would be allowed on his own but not with his brother or both his parents.

Because of his leukaemia, Henry has little tolerance to the sun. There is an indoor pool, and an outdoor pool that has no shade at all. We chose this hotel because it would give us options – to avoid the heat of the sun when necessary.

Iberostar Mencey’s unshaded outdoor pool

But when we asked for a short swim in the indoor pool, as it is not safe for Henry to swim too long in the direct sun, we were told the indoor pool was for adults only (a fact not made clear on the website). The pool is empty much of the time. Even though it’s a 5-star hotel the staff were totally inflexible. Henry’s kindly Uncle G, who has contacts in the hotel trade, made some requests behind the scenes and we received a call from reception and told our use of the indoor pool would be ‘no problem’.

Family permission withdrawn. Looking into the indoor pool.

We had a 20 minute swim and the boys were quiet and well-behaved. Two days later we returned to the indoor pool and our permission to swim as a family had been withdrawn. Apparently a fellow-guest had complained. The hotel manager said he had explained to this guest that the hotel had made an exception for us because our child has cancer, but the guest had said that this was not her problem – it was ours.

The hotel decided to prioritise this complainant’s wishes over ours.

We have, overall, been lucky on our travels when we have needed some flexibility. This is one of the few things that helps you through the grinding misery of childhood cancer. The Grand Hotel Mencey – one of the jewels of Iberostar’s chain – has been the exception. They have shown us meanness and shown our children that, in some establishments, intolerance is rewarded. I’m not sure this would have been legal in the UK, Iberostar insists that in Spain it’s fine.

It has tarnished our longed-for holiday that we have stretched ourselves to give the boys.

Yellow hair

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.

Big girls and benefits (a post from Celia)

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

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

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

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

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

Henry’s run

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.

.

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

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.

Breaking news: MRD result in

Good news from GOSH following Hen’s MRD. He’s responding well and the docs are pleased. We now have to discuss the next options for treatment… More to follow.

Meanwhile Huck loved the climbing frame

2 May 2013 – Henry on his way to his class for the first time in five and a half months

We all shouted at each other of course. We were late. Henry was refusing to finish his cornflakes and was pondering a meds go-slow. But in the end the temptation was too much.  He made it. After five and a half months, Henry went back to school this morning.

On Tuesday we found out that Henry still has some antibodies to protect him from the measles. He’s still at risk of course but the school is apparently healthy and we’re as confident as we can be that his class is well vaccinated. He’s only going for the morning – but this feels like huge progress.

He has a long way to go of course. We have a very, very significant milestone next week – a second Minimal Residual Disease test which will discover how much leukaemia is left in Henry’s blood. It will see if he’s on track to eradicate the disease. Even if that goes well then he will have another three years of treatment.

Although we have tried hard to keep taking this day-by-day, this test is a biggy and it’s nibbling away at us. We won’t know the results for a week.

But we have to take the good days when we can.  This morning felt like Henry’s first day at school ever. We tried hard not to cry. Henry seemed to take it in his stride – not delighted to be centre of attention; but not really minding it either.

The sun is shining. Henry’s with his friends.

Boris steps up… and puts a foot in his mouth

A quick note to add to last night’s blog… It seems Boris Johnson has held a measles summit at City Hall. He is quoted in the Standard saying that parents should not be “overly concerned” about a measles outbreak in London. That is very, very silly. We need to contain this outbreak as quickly as possible. Although he stressed people should give their kids the MMR vaccine, we must not give the dawdlers any wriggle room. People need to take their kids for vaccination now. Every jab counts; the faster you get it done, the better for everyone.

There is no treatment for measles, Henry’s cancer nurse consultant told me this morning he would have to fight it himself which he has little ability to do. Please be concerned, if not for your child then for other children.

[Update: I’ve just had a terse exchange with the Mayor’s Director of Communications who felt Boris had been misunderstood and that he had been trying to avoid panicking people. He also said the Mayor’s record was good on MMR, which is true. But I pointed out (as Celia did on LBC 97.9 this evening), that people didn’t know what ‘overly’ meant and they assumed it implied measles was not something to worry about (as many callers were saying on LBC 97.9).

Hopefully there will be a clarification on its way from Boris. Good grief!]

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.