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Another lesson

Since the last blog post, I've been to Ethiopia, we walked across London to raise awareness of eye cancer, and we moved house.

Things have been kind of busy.

But really the biggest news is that the treatment Asa's been receiving -- a combination of chemotherapy (using a single drug, Carboplatin) and aggressive cryotherapy -- seems to be working.

He has had two exams under anaesthetic in Birmingham since the treatment began, and the results have been more positive than we felt beforehand we could hope for.

At the Carrots Night Walk, with Cathy and Edith

The tumour load in the right eye has decreased to less than 10% of what it was before the start of this treatment.

In the doctor's words: “We're not there yet, but we're definitely headed in the right direction.”

In addition, Asa had a cataract operation at the end of September.

That went smoothly, and with the cataract out of the way it’s possible to show that there was very little new growth of the tumours in his left eye during the time that they’d been hidden from view -- more than 3 months.

No more chemo

The qualification to this catalogue of good news is that Asa had a severe allergic reaction to his last dose of chemo, two weeks ago, at Great Ormond Street Hospital.

We had just finished our lunch and were settling down for an afternoon in the out-patients' ward (the full dose takes 3 hours to infuse) when Asa suddenly became grouchy and sleepy-looking, and we lay him down on the hospital bed.

Within five minutes he was running a high fever, had vomited, and his blood pressure was plummeting -- heading into anaphylactic shock.

Thankfully the response from the medical team was almost immediate.

Within half an hour he was stable, and though he and Selam stayed in hospital for observation overnight, he was all right from there on.

The upshot, in any case, is that he'll receive no more chemo: No more Carboplatin because of his allergic reaction to that drug; and no more of the other drugs because he's already had as much of them as the doctors think he can tolerate.

Talking and reading

After this traumatic experience, Asa regressed for a few days, and stopped using his potty. (Did we mention he toilet-trained himself a few months ago?)

But that was a passing thing, and within a short while he was back to his normal routines, and chatting away happily to anyone who'd listen.

A typical conversational gambit for him is:  
“[The] 345 [bus] to South Kensington [goes by] King's College Hospital.”

Delivering a speech

Admittedly it’s not the best conversation-starter. But the enthusiasm with which he conveys this kind of information!

One of the things that strikes me about his language development is how many words he takes on board without having any notion of their real meaning.

What South means, for example, or King, or College.

Without knowing these things, phrases like this one nonetheless bind together memories -- in this case of an outing on the bus, and visiting King’s College Hospital for a flu jab.

A passion for symbols

This aspect of Asa’s language learning -- the ready use of words whose accepted meaning is obscure -- is surely common to all children.

More unusual, it seems to us, is his passion for numbers and letters.

He sees them everywhere:

  • Two manhole covers next to each other in the park are an 8
  • A piece of toast he ate at lunch yesterday became, at various points in the meal, an E, an F, an r and a 1.


The joy he takes in seeing things makes our latest piece of homework difficult.

We've been advised to patch his eyes on alternate days -- the right one, one day and the left one, the next -- to give his brain a chance to readjust to input from the left eye. (For 3 months before the recent cataract surgery the left eye provided little input at all.)

We started this on Saturday, patching the left eye -- which was no problem at all -- and yesterday we patched the right eye, leaving him with only the very impoverished vision from his left eye.

Chilling with one eye patched

Wearing glasses with a +12 lens for the left eye to compensate for liquid removed from his lens along with the cataract (and with the right eye patched), he is still very far-sighted: able to see things from across the room, but almost blind to things that are right in front of him.

We were unsure how he'd take to this -- Would he pull off the patch, and insist on using his ‘good eye’?

Remarkably, he didn’t. 

Instead, he tolerated the impaired vision all day, groping his way from room to room in the new house; occasionally bumping into a wall or a door, whereupon he’d reorient and take another tack; and generally taking it all in his stride.

Selam reported, after a short time that she spent wearing an eye patch to keep him company on Friday, that even with her 20:20 vision in the seeing-eye, she felt handicapped.

It’s yet another lesson in adaptability from our little tutor.


Thanks to everyone who has contributed to our fund-raising for eye cancer research.


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Relapse. Birthday.

Wednesday'sExamination Under Anaesthetic yielded some unexpected news.
In Asa's left eye, which had been stable since the end of primary chemo in June, there were 4 or 5 new tumours, and one previously treated tumour that was growing slowly. There were also some new seeds.
In his right eye, moreover, the tumours that had earlier responded well to Melphalan had started to relapse.
These areas are at the front of the eye -- as the doctor put it, "almost where the retina finishes."
And the seeds that were there last time had not responded to the cryotherapy.

Treatment options
When Selam picked Asa up from the recovery room, both of his eyes were red and swollen from cryotherapy.
Cryo is a stop-gap measure: Since too much of it can cause retinal detachment, this approach doesn't hold much promise for controlling the tumour growth in the long term.
The area of tumour activity is also too wide for the more gentle kinds of radiotherapy -- such as radiation delivered through a …

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. 
And the appearance of a cataract -- a clouding of the lens -- at this stage is unusual: puzzling to the doctors as well as us.
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 …