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 you possibly can.”

Asa with patch and spectacles

That was about as complete a discussion as we’ve had with him about this topic. We’d been prepared for it, in part, by advice from the play therapists at Birmingham Children’s Hospital, and a children’s book that they put together, which we’ve been reading at bedtime.

from 'When I come to Birmingham Children's Hospital'

But Asa’s questions went far beyond the content of the book, and drew on conversations that he’s overheard us having with doctors, and among ourselves.

He clearly understands more of what’s been going on around him than we’d assumed.  And now, at three-and-a-half, he’s getting articulate enough to feed some of it back to us.

Soon he’ll doubtless have other questions: Why are the tumours there? and When will they stop growing?

How should we respond to questions like these, when nobody knows the answers? 

The point at issue

Two months ago, one of Asa’s routine exams showed that the tumours in his right eye had relapsed. After a couple of blissful months when the tumours were relatively quiescent and the interval between check-ups had lengthened to four weeks, we went back to a schedule of three-weekly examinations.

At each of the subsequent exams, there have been signs of continuing tumour activity. 

Tomorrow we travel to Birmingham once again, ahead of an examination under anaesthetic on Friday morning.

We pray for good news. And for guidance in answering Asa’s questions as best we can.

Make a wish

 Recently we received a visit from the Make a Wish Foundation, a charity that provides special experiences for children with life-threatening illnesses.

To map the contours of Asa’s “wish,” two women from the foundation quizzed him on his tastes, preferences, and ambitions. 

Asa's ambition is to be a pilot or a truck-driver.

Living the dream

Unfortunately, neither driving nor flying will be open to him as careers. In the UK, drivers have to have at least 6:12 vision (equivalent to reading a license plate at 20 metres). At present Asa’s vision is 3:60 in the right eye and 1:60 in the left. On this basis, he’s been certified as ‘Severely Visually Impaired.’ 

On some versions of the certificate those words are followed by “(Blind)”.

View from the London Eye. (What does it look like through Asa's?)

But blind he isn’t. 

The law defines these things liberally. While visual ability varies along a spectrum from species-optimal to complete absence of light perception, British law has only two categories of impairment: Impaired, and Severely Impaired. So Asa, with his very imperfect, but very useful vision, gets lumped with those who can’t see at all.

Yesterday, around dusk, Asa took his push-bike out for a spin behind our apartment block. 

Nobody who saw him trundling gaily back and forth would have taken him for blind.

In solidarity with Asa and others with this disease, in September-October I will be walking -- not flying or driving -- in Africa to raise money for eye cancer. [2]

For more information, or to sponsor us, please visit Life and Sight for Ethiopia.

 

URL: https://africanbushtrek2014.everydayhero.com/uk/life-and-sight-for-ethiopia  
 
Notes

[1] The DVLA also requires a field of vision extending 120-degrees horizontally and 40-degrees vertically. That’s problematic for people with retinoblastoma, since tumours often create significant blind spots.

[2] There's more information on the the eye-cancer initiative I've been involved with in Ethiopia here and here.

Whipping out the wiggly

Last month, Asa celebrated his third birthday. On the same day, he started to write. He didn’t write much -- the words were dog and van. But if you saw him write them, you’d notice the pleasure he took in it -- in the alchemy of turning letters into living, moving things.

A little over a year ago, when his second birthday was approaching, he’d had a massive relapse. A week later he had a Hickman line inserted -- a sort of artificial umbilicus that provides easy access to the bloodstream -- in preparation for chemo. And although the chemo treatment lasted only four months, the line was left in, just in case more chemo, or radiation therapy, were called for.

Three weeks ago he had his Hickman line removed. The operation was carried out at Great Ormond Street Hospital, and it was fast. In a matter of hours we were on our way home again, and our little boy was no longer trailing rubber piping.

Naming the numbers on the hospital gown. 15 minutes later the wiggly was whipped out.

The absence of the Hickman line (or ‘wiggly’ as it’s often called) means Asa can start to do some things that children often enjoy, that have been off-limits to him for the last year. Like swimming. Or just splashing around in the bathtub. (The wiggly is vulnerable to infection, and has to be kept dry.)

And his dad doesn’t have to worry so much any more when he’s rough-housing.

More significantly, the doctors’ decision to remove the wiggly reflects some confidence that he may remain stable for a while.

A play therapist models breathing gas through a face mask before Asa’s most recent exam under anaesthetic.

The treatments Asa’s receiving now --  cryo and laser therapy -- are largely succeeding in keeping the tumours under control. Every three weeks, when he goes under anaesthetic, the doctors see new areas of activity; but for the past few months they have been small, and in parts of the eye that are easily accessible to treatment.

In comparison with the diagnosis that preceded his first birthday, and the relapse that overshadowed his second, this is good news indeed.

Little big man

 Raising a child with visual impairment makes you see the world differently.

At dinner with friends the other evening, I was astonished to see Asa’s best friend Angèle, who’s just a couple of months older than he is, watching TV from across the room.

What’s so strange about that?

Well, for Asa to see what was on the screen, he would have to stand within arm’s reach of the television set.

That had come to seem normal to me.

That may sound weird. But consider some of the other characteristics that we accept as natural for toddlers: short stature, primitive grammar, a predilection for tantrums. And their special, compensating features -- a mania for play; an exuberance that’s almost never found in adults.

The fact is, I’d gotten used to Asa not seeing as we do -- just like I’ve gotten used to him being smaller and livelier and having chubbier cheeks. And sometimes I forget that other children don’t necessarily share all of these traits.

The normalization of abnormality is part of a process of psychological adaptation.

Indeed, something like this must be going on for Asa himself.

If the scales were to fall away from his eyes tomorrow, he’d probably be very disoriented. The world would look strange and dazzling.

Like the people in Plato’scave, he’d probably prefer to keep the shades on.

For now, leaving the cave isn’t an option anyway.

What we’re trying to do instead is make little steps towards the light.

Bifocals

How are we going about that?

The latest thing we’re trying is bifocals.

Aren't those for old people? you may ask.

Usually, yes. But then again, so are cataracts.

In Asa's case, a cataract (a side-effect either of his cancer or the chemotherapy he’s received) effectively blinded him in his left eye until it was operated on in September.

In the cataract operation, the surgeon removed the natural lens of the left eye, which had become opaque.

This all seems to have worked out pretty well. But as a consequence he's left -- at least for the time being -- with quite poor vision in this lens-less left eye.

For the past few months, we've been patching his good eye periodically, to give the left eye practice -- or more precisely, to give his brain practice at dealing with input from it.

And to help the brain along, we’ve been fitting him out with spectacles with a very strong lens on the left side, to compensate for the short-sightedness.

The new bifocals will provide some close-up magnification as well, which may help him with some of his hobbies: writing, painting, and, um, watching The Tellytubbies on his mum’s phone.

Perhaps we should get him a pipe and tweed jacket to go with those bifocals.

He'll reach the ripe old age of three this week.

Discovering poetry

The child does not exist who, between the ages of 2 and 5, does not display a predilection for poetry.

I stumbled across this quotation yesterday in a notebook I'd kept a few years ago -- copied from a text by the Russian writer, Kornei Chukovsky.

It seems apt, because just this week Asa's started rhyming.

We were sitting on a sofa in our hotel in Birmingham on the night before his last medical exam when, à propos nothing, he came out with two words that rhymed.

"What about, head and bed?" I asked in response.

"What about, light and tight?" he rejoined.

We kept the game going for a while. And since then it's become a regular way of passing time.

The fact that children should invent (or discover) poetry as a matter of course, as they learn to speak, is amazing to me.

Of course, Asa's been exposed to rhymes -- in books like You Are My I Love You, and in songs.

But how readily he makes the idea his own!

And this is really part of a whole bundle of discoveries that children make around his age -- including music, dance, symbols and patterns.

For Selam and me, interest in these aspects of Asa's development is heightened by the fact that his vision remains problematic.

Perhaps we shouldn't be so concerned. Deaf children start to sign at around the same age as hearing children start to babble: Even with a sensory disability, there are certain important developmental processes that seem just to unfold anyway.

But so much of our experience of the world depends on sight, that we wonder what aspects of Asa's development might be set back, and we try to think of things we might do to make up for it.

Latest ups and downs

The past few months we've been through some ups and downs. (When hasn't that been the case?)

Two months ago, at one of his regular exams under anaesthetic in Birmingham, the doctors noted some tumour growth very close to the ciliary body -- a part of the eye where there's a lot of blood flow in and out. If tumours are active in this region of the eye, it's dangerous, because it means that cancer could spread through the bloodstream and take root elsewhere in the body.

During the following weeks I corresponded with doctors in the US, Canada, and Switzerland -- those we'd called upon at the last fork in the road, when radiotherapy had been recommended -- to get their opinions on what to do. The doctors in Birmingham had agreed that in a case like this (Asa is now among the perhaps 1% of retinoblastoma patients who do not respond to chemotherapy) it made sense to get a range of opinions.

It was a great relief when, at the following exam, the tumours near the ciliary body turned out to have responded well to local treatment. For the time being at least, radiotherapy is off the table again.

But we can't rest too easy. Last Friday Asa had his 22nd exam under anaesthetic, and although things are relatively stable, he's still never had a single exam at which new tumour growth of some kind or another hasn't been visible.

These are phenomenally active tumours, and if they weren't kept in check they'd doubtless be fatal.

Counting time

Asa’s disease, a cancer of the retina, affects children almost exclusively, and is most active during the part of the lifecourse when the eye does most of its developing -- from birth to five years old.

After five, the chances of new tumour growth declines dramatically. And the closer you get to five, the lower those chances get too.

In two weeks time, Asa will turn three.

So each month without a major relapse is a victory.

Each month that he sees is something to celebrate.

And in each day, there’s poetry.