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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.


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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 …