Tag Archives: cancer

Are we trying to beat childhood cancer?

Henry is on old medicines. That is, they were developed a long time ago. We’re lucky in that mostly they work. Over the years, their combination and use has been tested and tweaked.

And now Henry, as part of the clinical trial UKALL2011, is helping to tweak the treatment further. This trial is about reducing the levels of poison needed to beat this childhood cancer.

Henry with Huck at nursery graduation 2014

Henry with Huck at nursery graduation 2014

These treatments have long-lasting effects; so striving to improve them is hugely important. The idea is to make the rest of H’s life and the lives of future children with leukaemia better.

I’ve wondered for some time why the medicines have been around so long and why new treatments have not appeared. This documentary helps to explain.

I’m delighted the excellent BBC documentary team at File on 4 have shone a light on this. Now it’s time for politicians, mandarins and industrialists to act.

Kill two birds with one stone: you could always download the podcast and listen to it while giving blood.

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

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

Don't judge a book by its cover

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

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

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.

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.