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Hopes and fears

We’ve been enjoying a good spell these past 9 months. Asa has continued to have exams under anaesthetic every 3 to 5 weeks, but after most of them we’ve gone home feeling reassured and encouraged. Asa's nearly five now, and for a long time we held out hope that five was a magic number: the age at which the retina stops growing; and for most children with retinoblastoma, the risk of new tumour growth declines to insignificance.

In the first week of the new year, however, the doctors noted an area of new tumour activity in Asa's right eye. They’ve had their eyes on this spot for some time, and since they’d already tried on multiple occasions to treat it with cryo and laser therapy, and since it’s a discrete lesion as opposed to a diffuse area of growth, they opted to use a radioactive plaque.

So yesterday Asa had a radioactive plaque inserted into his eye, for the second time.

The fact that he’s undergoing this treatment again (the first time was back in June) doesn’t mean the last radioactive plaque failed. The plaques the doctors are using are small —only about a centimeter (11.6 mm) in diameter — and they treat a small portion of the eye. 

In fact, the tumour that was treated last time has responded well to the treatment, and the new plaque is being used to treat a different part of the eye. 

It’s an advantage of this treatment that it can target a particular spot so well: Radiation is dangerous, and ideally you don't want it touching anything that doesn't really need it.

Sign that was hung on the door of our room at Birmingham Children's Hospital back in June, 2015.

Although for about 24 hours Asa is being cooped up in a room with an 'ISOLATION' sign on the door, the radiation doesn’t actually penetrate more than a few centimeters beyond the surface of the plaque itself. Any effect on those around him (doctors, nurses, and us) is quite negligible.  

How does Asa feel about all of this?

When we broke it to him that he’d be having a radioactive plaque again, Asa's response was, “That’s good! I can go to that playground.” 

He was remembering a playground on the grounds of Birmingham Children’s Hospital – in a part of the complex that we haven’t visited since the last time he had a plaque.

For us too, memories of the last treatment are largely positive. We were put up in the hospital's Teenage Cancer Trust ward, where there were lots of distractions: a pool table, an electric keyboard, and so on.

We’d hoped those good memories would colour this round of treatment for him. But he's changing so fast, it’s difficult to predict.

This past Christmas, for example, was a very different experience from the previous year – much more exciting for him, because he had a grasp of what was going on (and especially of the magic and mythology of what was going on).

Since that last round of treatment, he’s also started school, and he's much more socially adept than he was nine months ago.

Our fear, I suppose, is that his increasing grasp of what’s going on in the world will lead to more anxiety about going to hospital; about the whole business of having cancer, and being visually impaired.

For the time being, though, he continues to put up with hospitalization, anaesthetics, soreness, and compromised vision with amazing good humour.
Doodling to pass the time. The plaque was left in his eye for about 20 hours.

His fears seem to be of the more ordinary sort for children of his age – of things like bears, crocodiles, and dinosaurs.

Signs on Asa's bedroom door. Bears and crocodiles prohibited.

(Recently, after a seeing a TV news story on violence in Mexico, he’s added “drug lords” to his list of bogeys.)

Next week he’ll be five years old.


  1. Thank you for the Asa update! Bears, crocks… (drug lords? does he already have the social consciousness of his father?) sound so normal. I imagine him bathed daily in love from his mother and father and community. Light and love from us in Atlanta. Sally

  2. Light and love to you and your family from all of us, Sally!

  3. Oh Jed, what a wonderful post! Asa is just amazing. You and Selam too. Can't wait to see you all again. LOVE m

    1. This comment has been removed by the author.

    2. Thank you, Miriam! We look forward to seeing you and Viva again -- before long I hope.

  4. So great to read your update, Jed! Sending love and hugs to you, Selam, and Asa :)

    1. Love to you and yours from us, Michelle.


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