Skip to main content

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 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. 






Comments

  1. Amazing to read this, Jed & Selam! I do hope the good news continues... Lots of love to you all, JP

    ReplyDelete
  2. Hi Jed and Selam-- so wonderful to read this latest news. I'm currently in Addis until mid July-- please let me know if there is anything you might want me to bring to Atlanta from here. And, any chance you'll be traveling to Ethiopia this summer?
    Thinking of you all very fondly!
    -danika

    ReplyDelete

Post a Comment

Popular posts from this blog

Trains

Maybe it's all the to-and-fro'ing we've done on the trains between London and Birmingham for his eye exams, or maybe it's due to some kind of innate fascination with large moving things, but Asa loves trains.







I post these drawings of his partly to cheer myself up. It's been a pretty rough week, watching the US elect a con man as President.

Asa is an American citizen, and in 13 years time he'll be eligible to vote. I'm grateful that he's healthy, and that he stands an excellent chance of living a full life. But I worry about the world that he and his generation will inherit.

Let us pray for wisdom in our leaders, and for strength and resolve for those who resist them in the cause of the greater good.


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…

Hard questions

One morning recently, when we were trying to get Asa to put on his socks, he asked us, seemingly out of nowhere: “What does it have in it, my right eye?” It was clear he wasn’t in discomfort; it wasn’t that he had a piece of grit in there. He pointed up at his eye with his index finger.
“Well, it’s got jelly in it,” I said. “And a retina, and a lens. And lots of other things we didn’t know about two years ago.” “And what does it have in it, my left eye? Does it have a lens?” “No, your left eye doesn’t have a lens.” “What happened to it, the lens?” “The doctor took it out, because the eye was poorly.” “Was the lens poorly?” It had gotten --” “Cloudy,” Selam offered. “Yes, it had gotten all cloudy, and you couldn't see well through it. So he took it out.” “Who took it out?”  “The doctor took it out.” “It doesn’t have any lens.” “No. That’s why you have to wear glasses sometimes, so you can see better. And that’s why Mummy patches your right eye sometimes. Because we want you to see as well as …