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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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