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Blind for a day

My mum likes to say that we learn about our bodies the way we learn about cars -- each time something goes wrong, you get acquainted with a new branch of mechanics.

As various treatments have been tried out on Asa, we've learned more and more about cancer and the eye.

The graph below summarises the treatments Asa's received these past 18 months.

Notes: IAM = intra-arterial melphalan. Primary chemo = vincristine, etoposide, carboplatin.
Secondary chemo = topotecan, vincristine, doxorubicin. On diagnosis, both eyes were stage D
in the International Classification System.

Situations where retinoblastoma fails to respond to both primary and secondary chemo are rare, and even at one of the world's specialist treatment centres, a doctor might see such a case only once every few years.

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Right now we're in a place, therefore, where epidemiology and large trials have ceased to help much, and clinical judgment becomes very important.

As Dr Jenkinson -- the oncologist we met with in Birmingham -- said, "We're beyond the situation where there's a firm evidence base."

What's required then is very close attention to the details of the disease as it's manifested in Asa.

Tumour topography

"The retina is like the inside of an egg-cup," the ophthalmologist, Mr Parulekar, told us.

In Asa's case most of the tumours in the right eye are around the rim of the egg cup. Not all the way around, but covering approximately half of the circumference. In places, they extend down towards the bottom of the cup.

But the fact that the majority of the tumours are on the periphery of the retina -- and not way at the back or floating in the vitreous jelly of the eye -- means they may be treatable with cryotherapy.

Sometimes referred to as TTT or "triple freeze-thaw", this technique involves inserting a probe into the eye and freezing the tumours.

Blind for a day

Asa had received cryo before, but never as much as he did on Friday.

When we picked him up from the recovery room, his eyes were shut tight and his right eye, which had been treated, was puffy.

On the way back to the train station, we passed a helicopter, which he would have been delighted to see.

Thankfully the air-ambulance was not there on our account.

But he kept his eyes closed for about 24 hours -- all through the journey home, and for most of the following day.

It was sad to see how isolated he was during this period of blindness.

But marvellous to see his excitement, the next day, after he opened his eyes.

In the playground, the day after cryo. Asa opened his right eye (the only one that's currently useful)
less than half an hour before Selam took this photo.

The new plan is to use more cryo, possibly accompanied by chemo, to try to shut down the tumours in the right eye.

So Friday's experience will likely be repeated in coming weeks.

Where will this lead?

Will the cryo will succeed in controlling the tumours? 

And, if chemo's required, which specific drugs might be used?

We don't know.

But at least it now seems firmly established that radiotherapy or enucleation are not the only options.

Asa has a fighting chance of maintaining his sight without recourse to a treatment which would significantly raise his risk of later cancers.

The treatments that are open to us are not, however, without their own risks.

  • Aggressive cryo carries a risk of retinal detachment, which can impair vision.
  • More chemo would mean increased risk of longterm side effects from the drugs (including hearing loss for carboplatin, and cardiac damage for doxorubicin).

  • Operating on the cataract in Asa's left eye (about which more soon) would involve a small -- but real -- risk of the cancer disseminating beyond the eye.

More generally, after a year and a half of living from month to month, never knowing what might be uncovered at the next exam, we're entering a period of even greater uncertainty -- when the prognosis may change from week to week. 

Or, as it did this past week, from day to day.

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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.
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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. 
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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 …