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Asa's third summer

We ended with a cliffhanger last time, describing 3 possible outcomes of Asa's last EUA.

As it was, the results of the EUA were much better than we'd feared, but not quite as good as we'd hoped.

The tumours in Asa's eyes appear to be stable.

They didn't shrink much as a result of the second-line chemo, but nor did they grow.

That puts the results somewhere between options 1 and 2 in terms of the scenarios we'd anticipated -- No dramatic response to chemo, but no new treatment required, at least for the moment.

Looking for signs

One encouraging point is that the ophthalmologist who examined Asa under anaesthetic didn't see any blood vessels inside the tumours -- blood supply being one of the things that would keep them growing.

So it's possible that despite the lack of shrinkage, they may have had the life taken out of them.

The cataract

The cataract in Asa's left eye, however, has definitely gotten worse.

This may be a result of retinal detachment, which could be due to the tumours (the retina was already detached at diagnosis, 18 months ago) or to the treatments he's received.

Because the cataract obscures much of Asa's left eye from the doctors' view even when he's under anaesthetic, we had to visit Moorfields -- London's specialist eye hospital -- for a high-resolution ultrasound, a way of "seeing through" the cataract.

The ultrasound seemed to be consistent with the initial EUA results: The tumours looked no bigger or smaller than they were before chemo, and there's some evidence that they're calcified.

Summer holidays

In the 2 weeks since the exams, we've enjoyed ourselves.

We spent a weekend with the grandparents in Essex, and last week we took a trip to Liverpool, where I was attending a conference (which I blogged about here).

Fulfilling a wish of Selam and grandma Kuri, Asa visited Anfield Stadium, home of Liverpool FC.

Our warrior in Liverpool

An audio recording of 30,000 people singing "You'll Never Walk Alone," played over the stadium tannoy -- a sound rather like a rising and falling wind -- made an impression on Asa, and he's since been imitating it, singing to himself.

Another exam

Tomorrow Asa has an MR (magnetic resonance) scan at Great Ormond Street, to check out some recurring head pain.

For several weeks now he'll be playing happily, or just hanging out with us, and all of a sudden he'll grab his head and cry.

This began during the latter part of chemo, and at first we assumed it was a side-effect of the drugs, which can cause discomfort and pain.

But it's persisted long since the chemo drugs left his system.

The scan might shed some light on this.

Our worst fear is that a brain tumour could be to blame. We've hardly spoken of this, because it's such a hard thing to contemplate.

The results, which should be available by Thursday, will, we pray, put those fears to rest.


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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.

Situations where retinoblastoma fails to respond to both primary and secondarychemo 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'…

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…