Recently I caught sight of
Asa, and the way the light was falling on him made him look to me, for the
first time, like the sort of children we sometimes see in hospital waiting
rooms – Completely bald from chemotherapy. And unwell.
This struck me, because for
the most part, Asa doesn’t seem sick to us these days. He’s so lively, so playful and happy
that we often forget about his illness.
Of course, his hair has
almost disappeared. He sometimes
looks pale. And he still sometimes needs an NG tube to get his medicine
in. But that’s about where the
resemblance to a sick child ends.
 |
| Asa & granddad Clive |
Sometimes friends ask how
Asa is doing, saying “We heard he’s very sick.”
It can produce an odd look
from us, because it’s both true and untrue.
The end of chemo
During the 5th cycle of
chemo, Asa was on a lower dosage (50% Vincristine), and the side effects were
milder. His appetite declined
early on, but soon he was eating more or less normally again, and his energy levels
were high. He had none of the
discomfort we’d seen during the 1st and 4th cycles. He
needed a transfusion of platelets in the second week, but his haemoglobin level
remained in the normal range throughout.
As the cycles of chemo have
progressed, we’ve gotten more relaxed. Whereas a couple of months ago we were
keeping him confined to a few designated safe areas in the house, these days he
roams widely (most of the time, on two feet), and he’s made the place his own.
Tomorrow, if all goes well,
Asa will receive his last dose of chemo.
It will take about 3 weeks
to work its way out of his system.
After that, we hope we may be able to relax even more.
The latest on Asa’s eyes
The latest news we have on
the cancer, from an examination 3 weeks ago, is this:
The large tumours in both
eyes are inactive, and in the process of becoming calcified.
But there are 50 to 100
seeds (small, beginnings of tumours) in the retinas of each eye; and in the left eye there are 2 vitreous
seeds – seeds outside the retina.
Whereas before chemo both
retinas were detached, the retina of the right eye has now become attached
again.
 |
| Sporting shades after an eye exam, April 2012 |
The prospects of the retina
re-attaching in the left eye are lower – As a doctor told us, if the
retina hasn’t attached by the 4th cycle of chemo, it’s unlikely to
do so afterwards.
This is important for a
couple of reasons. For one, a
detached retina impairs vision.
For another, a class of therapies including laser and cryo aren’t
possible if the retina’s detached (they can detach it even further).
Because the retina in the
right eye has re-attached, laser therapy could be performed on the subretinal
seeds in the right eye at Asa’s last session. But nothing was done to the left eye.
So what are the options for
the left eye?
If either the seeds or the large
tumours in the left eye become active again, then the first recourse might be
intra-arterial chemotherapy (intra-arterial melphalan, or IAM), delivered
directly to the eyeball rather than to the whole body.
And although the doctors
haven’t mentioned it recently, there remains a possibility that if the
therapies don’t work, the eye might need to be removed.
We hope and pray that won’t
be necessary.
Implications for vision
What does all this mean for
Asa’s vision at present?
With the retina detached in
the left eye, the doctors infer that Asa can only see “light and dark” out of
that eye. And because of the size
and position of the tumours in the right eye, they assume he has only limited
vision there.
But there’s a weird
disconnect between the doctors’ judgments, based on examining Asa’s eyes under
anaesthetic, and our observations of his behaviour from day to day.
First of all, he gets
around, makes eye contact, snatches things from us, and generally behaves just
like any other child. There’s no
obvious visual impairment at all.
Second, when Selam
breastfeeds him, Asa often has one eye at least partially covered, as he lies
sideways on her lap. In this
position, she’s able to test his vision in each eye by proffering things (her
necklace, a mobile phone, and so on) and seeing whether he reaches for
them.
Selam’s impression, based on
many such tests, is that Asa sees better with the left eye than his right. He’s more likely to reach for stuff
when his right eye is covered than when his left eye is.
Which is precisely the
opposite of what we’d expect from what the doctors tell us.
One interpretation of this
is that the “light and dark” he gets from the left eye is better even than the
partial vision he gets through the right eye (where the tumours are more
centrally located).
Since he doesn’t cooperate
when people try to patch one eye (he protests and tries to rip the patch off),
it’s difficult to test him formally.
But he’s clearly using what
vision he has to the max.
Next month, after the last cycle of chemo is finished, we’ll have a follow-up
vision test at the Royal London Hospital.
Perhaps then we’ll get a better sense of how well he’s seeing, with each
eye.
For the moment, it remains a
daily wonder to see him roaming and playing, and defying anyone to call him
sick or visually impaired.
