Sick and visually impaired?

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 4^th 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.