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A new strategy

Last Wednesday’s visit to the hospital was the first time Asa has shown distress when he’s seen doctors and nurses. 

As soon as a nurse began to escort us towards the place where his vision was going to be assessed, he started to cry -- anticipating what was coming (stinging eye drops, anaesthetic gas, soreness…).

An exam under anaesthetic (EUA) later that day showed that although his left eye is stable, there is continued tumour activity in his right eye. 

This is pretty much the same story as for each of our EUAs since the end of systemic chemotherapy.

Up until now, the new tumours seemed to be treatable with cryotherapy. But this time the previous session’s cryo didn’t seem to have worked so well. “It  isn't controlling things enough," the ophthalmic surgeon Mr Sagoo told us. 

“We have to think of another strategy.”


The possibility that Asa might receive IAM was mooted back in July, and since then the doctors have debated whether or not it was warranted.

IAM -- intra-arterial melphalan -- involves infusing a chemotherapy drug (melphalan) directly into the eye. It avoids some of the nasty side-effects that accompany whole-body chemo. It also means a higher dosage of the drug can be aimed at the eye.

Possible side-effects are squint, drooping of the eyelid, and dilation of the pupil. Usually these are transitory, but in some cases melphalan can damage the retina and lead to long-term loss of vision.

The long-term effects are difficult to know because the procedure is so new. First developed in New York in 2006, it has been performed in the UK since 2008.

Despite all this, the balance of risks and benefits is better for IAM than for the alternative, which is radiotherapy.

It will be done on Wednesday, September 19th, at Great Ormond Street Hospital.

Walk with Asa

Two days after the IAM, Selam, Asa, and I will walk across London at night to raise money for retinoblastoma research.

We’ll be walking together with other families affected by eye disease.

The money we raise will go directly to the Childhood Eye Cancer Trust (CHECT) -- an organization that supports research on more effective treatments for Rb.

Please consider sponsoring us. To find out more, or donate, see:

Asa looking at butterflies


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Mixed results

Last Wednesday Asa was put to sleep and underwent an eye exam under anaesthetic. 
The first since the beginning of the new chemo, the exam showed that the drugs have had a "partial effect."

In Asa's left eye, the tumours responded well to the chemo. 
But in the right eye, there's been a slight increase in tumour activity.
And in the left eye there's a cataract developing.
A mixed bag
This was not what we'd hoped to hear.
We had reason to expect that the TVD (topotecan-vincristine-doxorubicin) combination would lead to shrinkage of the tumours in both eyes. 
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While cataracts can be removed through surgery, cutting into the eye when there are active tumours inside is not advisable. So treatment for the cataract itself will have to wait until the tumours are stable.
The main risk in the near future is that the cataract may make it difficult to moni…

Hard questions

One morning recently, when we were trying to get Asa to put on his socks, he asked us, seemingly out of nowhere: “What does it have in it, my right eye?” It was clear he wasn’t in discomfort; it wasn’t that he had a piece of grit in there. He pointed up at his eye with his index finger.
“Well, it’s got jelly in it,” I said. “And a retina, and a lens. And lots of other things we didn’t know about two years ago.” “And what does it have in it, my left eye? Does it have a lens?” “No, your left eye doesn’t have a lens.” “What happened to it, the lens?” “The doctor took it out, because the eye was poorly.” “Was the lens poorly?” It had gotten --” “Cloudy,” Selam offered. “Yes, it had gotten all cloudy, and you couldn't see well through it. So he took it out.” “Who took it out?”  “The doctor took it out.” “It doesn’t have any lens.” “No. That’s why you have to wear glasses sometimes, so you can see better. And that’s why Mummy patches your right eye sometimes. Because we want you to see as well as …