Skip to main content

A hard decision

This week's EUA didn't turn out the way we'd hoped. 

"The right eye has relapsed," the doctors told us after they examined Asa.

"Areas we've treated many times with cryo and with chemo, … last time they looked stable and avascular. 

Today they're growing.

More cryo is not the answer. We've done a lot of it, and it's not controlling things.

Second-line chemo held things at bay, but also in the longer term is not working.

I'm afraid we are recommending radiotherapy.

We don't have another option."


In the past months we've thought about radiotherapy -- it was clear that it would be on the cards if another relapse occurred -- and we tried to prepare ourselves psychologically.

Last week I spoke with a friend who received radiotherapy for Rb as a child, and asked her how she felt about the treatment -- its effectiveness in attacking her tumours, versus the side effects.

When she'd been treated, radiotherapy was the only treatment for Rb -- that or enucleation.

"Increased risk of second cancers is the main concern," she'd said immediately.

Radiotherapy is very effective at killing active tumours but it also damages other tissues, raising the risk that other cancers will develop, later in life.

The key questions are, By how much is this risk raised?

And how much sight is the treatment likely to preserve?

There's no point in giving radiotherapy -- and incurring that extra risk of later cancer -- to eyes that won't provide useful vision.


Asa's vision

As anyone who's spent much time with Asa can attest, he has very useful vision.

Just the other weekend, when we visited the London Aquarium, he was running around confidently in its dimly lit rooms and tunnels.

At the London Aquarium, July 6, 2013

But we realise now more clearly than ever before that he's in danger of losing his sight completely.

On Wednesday, the doctors for the first time raised enucleation as a possibility for the left eye, because they can't tell what's going on behind the cataract.

Ultrasound provides some information on what's going on there, but only on a gross scale -- "we can't see subtle changes," they said.

Let's consider in more detail, then, what radiotherapy involves.


What we know about radiotherapy

What we know about the treatment that's been recommended is this:

  • It's external beam radiotherapy (a beam of radiation directed at the eyes from outside).

    Since the tumours in Asa's eyes are diffuse, they can't use the gentler forms of radiotherapy; instead they would have to treat the whole of both eyes.

  • It's given under general anaesthetic, with a mask to immobilise the face.

    This stops the patient moving around, which would decrease precision.
    A mesh template for a mask used in radiotherapy.
    Image from the Macmillan website

  • The course of treatment is usually one month.

    Treatments would be given from Monday to Friday, with a break on weekends -- i.e. 20 sessions in total.

  • And, unlike with chemo, it's very rare to carry out further courses of radiotherapy after the  initial course.

    It either works or it doesn't.

What we don't know

There is of course a lot we don't know about radiotherapy.

We’ve heard that whole-eye radiotherapy sometimes affects the lacrimal gland (the tear duct), producing a debilitating "dry eye" syndrome that may be permanent.

How likely is it that Asa would suffer that?

And how high is the risk of second cancers?

The answer to this question depends in part on 

  • how much long-term follow-up has been done
  • and how much of that long-term follow-up involves children who've received equivalent doses of radiation, with equivalent precision, to what Asa would be getting. 

The doctors at the Royal London deflected some of our questions on Wednesday, encouraging us to ask the radiotherapists at Barts who carry out the treatments.

If anyone has relevant information on any of these questions, we'd be grateful if you would contact us.


A hard decision

What the choice seems to boil down to is this:

Certain blindness (double enucleation), with a lower risk of later-life suffering, or possible sight (radiotherapy), with a higher risk of later-life suffering.

At the moment it’s very difficult to evaluate those risks.

As the doctors are wont to say, "We don't have a crystal ball" to see the future.


Walk with Asa

In September we will again walk across London at night, to raise money for retinoblastoma research.

We do this in hope:

  • that research may identify better treatment options than what’s available right now;
  • that other families may be spared the hard decisions we have to make;
  • and that other children with retinoblastoma may be spared Asa's suffering.

We invite you to support us here: 


  1. Hi Jed,
    I am so sorry for this latest discovery and impending tough decisions. Let me know if there is anything Travis and I can do to help. We are thinking about you often and sending love your direction.
    My best,


Post a Comment

Popular posts from this blog


Spring. Bulbs and buds burst into flower. Things come back to life.
Ayya's namesake Anne was born in Spring, in Nashville, Tennessee, on March 25th (also known as Lady Day, or the Annunciation), the day when people in Medieval Europe thought the world began.

What threads connect Anne to Ayya? What affinities, beyond a name, and a fraction of shared genetic material?
As a young woman, Anne lived in Africa for five years. She had just married a Frenchman, Jean-Paul, and accompanied him to Cameroon, where he was to work as a teacher in lieu of military service. She was a new mother at the time (she carried my cousin Miriam with her), and it was there that she gave birth to her second child, Eric.
One of my favourite works of anthropology is a study of infancy in West Africa. Among the Beng of Cote d’Ivoire, children are understood to come from the Afterlife. In their way of thinking, people’s spirits enter a sort of limbo when they die. When babies are born, they gain passage back into l…

Cataract / VI

At about 4 o’clock this afternoon, Asa came around after being under anaesthetic for a cataract operation. It was the first time he’d had surgery – indeed, anything but routine eye exams – for more than a year.
Selam and I felt more anxious than we’d expected to be about this operation. It brought back memories of difficult times. Times – there had been dozens of them – when we waited, with a mixture of fear and hope, for news of how the procedure had gone. There had been a few times when we’d felt we we were close to losing him – like that time when he was on second-line chemo, and I was in Congo, and Selam told me over the phone that his Hickman line was infected. Or that time, during the third course of chemotherapy, when he went into anaphylactic shock.
Compared to those occasions, this cataract operation was low-risk. And, thank goodness, it went smoothly.
As Asa gradually regained consciousness, he put his fingers to the plastic shield taped over his right eye to protect it. Sela…


Maybe it's all the to-and-fro'ing we've done on the trains between London and Birmingham for his eye exams, or maybe it's due to some kind of innate fascination with large moving things, but Asa loves trains.

I post these drawings of his partly to cheer myself up. It's been a pretty rough week, watching the US elect a con man as President.

Asa is an American citizen, and in 13 years time he'll be eligible to vote. I'm grateful that he's healthy, and that he stands an excellent chance of living a full life. But I worry about the world that he and his generation will inherit.

Let us pray for wisdom in our leaders, and for strength and resolve for those who resist them in the cause of the greater good.