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."
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| Asa and dad at the Royal London Hospital, before the EUA |
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 monitor the activity of the tumours
in that eye.
Sight and development
An optometrists' exam the day after
the EUA suggested that Asa's sight has not gotten appreciably worse over the
last two months.
It was a relief to hear this.
Indeed to us -- his parents -- it
seems that his sight might be improving.
But how could this be, given the
equivocal changes in the tumours, and the cataract in one eye?
The thing that suggests improvement
is that Asa is increasingly naming the things he's seeing -- a
"doggie" on the other side of the street, "Mama" in a
family photograph...
Evidence of the extent to which Asa's childhood is
now medicalized:
1. The first time he uttered the word
"arm," a couple of weeks ago, was when a nurse was asking where she
should place his blood pressure cuff.
2. For several days after his last admission to
hospital, he walked around proclaiming his most recent temperature reading (proudly
and unprompted): "[Thirty] six [point] nine!"
It’s a form of
words he's heard us use all too often, as we monitor him for signs of fever.
In the last week, he's made great
progress in discriminating letters and numbers, pointing at and naming them in
books, on toys, and anywhere else he finds them.
Sharper-sighted, or just smarter?
But there's a danger here of
confusing the ability to name things with the ability to see them.
The gains Asa seems to be making in visual
discrimination are probably due more to a spurt in language development than to
improvement in his eyesight.
In other words, they're the result of
potential that had been untapped while he was unnable to put names to things.
While his progress is wonderful to
witness, we're also seeing signs now of how he's adapting to compromises in his
vision.
Playing with an electronic toy that
speaks and spells words to him, he'll occasionally hold the letters close to
his face, or bend down from the waist to position his eyes close to them, with
a twist of the head to get the best part of his visual field working for him.
Onwards
Despite the equivocal results of the
chemo so far, the doctors have recommended proceeding with at least two more
cycles (each lasting 3 or 4 weeks).
The 3rd cycle was to begin on Monday,
but Asa's had diarrhoea the last few days -- and he's lost a kilo in the
last 2 months -- so he's been given a breather until later in the week.
Tomorrow he'll be reevaluated; we
hope he'll prove to be stronger.
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| With grandma Kuri in Whitechapel |
With luck, the tumours in the right
eye that haven't yet responded, simply need a more prolonged exposure to the
drugs.
Jed is in Congo for the next several
weeks; Selam and grandmother Kuri are caring for Asa in London.
