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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.

 Support research on eye cancer here.

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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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.

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…