The age of yes

 

Last week Asa had a spurt of language development. 

Since about 11 months old, he's gotten by with only a couple of words, mostly Mama and Dada (though he understands far more).

This past week he more than doubled his repertoire, adding Yes (and its Amharic equivalent, Awo), No, and Oh dear.

Of these words, the one he uses most is Yes.

Ask him anything -- say anything with rising intonation at the end of the phrase -- and "Yeh" is what he'll most likely say in response (often followed by laughter).

Folk knowledge and parenting books have prepared us for the Terrible Twos, an age when "No" becomes children's favourite word, and they refuse to cooperate in any plans they haven't hatched themselves. 

Asa won't be two for another 4 or 5 months, and hopefully he'll skip the terrible part. In any case we're enjoying his willingness to go along with our plans for the time being.

His tolerance was clear last Friday, on our night walk across London.

I was struck by it as we were crossing Lambeth Bridge.

Wind and rain were buffeting us. But Asa sat contentedly in his buggy -- looking out through a visor studded with raindrops at a world of blurry, refracted streetlights and darkness.

As long as there was food in his belly; he wasn't too hot or cold; and we were there, I figured, the world would be all right by him.

A long walk

The walk turned out to be more of an adventure than we'd expected.

We'd taken the wrong bus from Peckham, and reached Waterloo after the other walkers had left. Hurrying to catch up with them, we were handed a map, oriented briefly, and set off.

En route, opposite Westminster

It wasn't until we got to the first checkpoint, where shelter and refreshments were meant to be available, that we realised something was awry.

Finding the place closed and locked, we called back to base. 

We were in the wrong place. 

It turned out that we'd been given the 15-mile map rather than the 6-mile one.

There were two walks happening that night, the longer one looping around South Kensington, and the shorter one confined to Trafalgar Square, the City, and the South Bank.

We'd gotten most of the way to South Ken before we realized what had happened.

By the time we got back to Waterloo, most of the other 6-milers had already finished and gone home. 

And the 15-milers were just setting off; we caught sight of their backs as they headed off towards South Ken with a whoop.

Some wore orange wigs, and one or two were dressed as carrots.

A word for our sponsors

It would have been nice to have gone with the rest of the crowd, but the three of us enjoyed the walk anyway. 

We got outside of our usual tramping grounds, saw some new parts of the city, and had some quiet time to ourselves.

And in the process we raised over a thousand pounds for retinoblastoma research.

Many thanks to everyone who sponsored us!

More soon on Asa's IAM procedure, which went smoothly.

The website for donations for eye cancer research remains open: http://www.justgiving.com/walk-with-asa

A new strategy

Last Wednesday’s visit to the hospital was the first time Asa has shown distress when he’s seen doctors and nurses. 

As soon as a nurse began to escort us towards the place where his vision was going to be assessed, he started to cry -- anticipating what was coming (stinging eye drops, anaesthetic gas, soreness…).

An exam under anaesthetic (EUA) later that day showed that although his left eye is stable, there is continued tumour activity in his right eye. 

This is pretty much the same story as for each of our EUAs since the end of systemic chemotherapy.

Up until now, the new tumours seemed to be treatable with cryotherapy. But this time the previous session’s cryo didn’t seem to have worked so well. “It  isn't controlling things enough," the ophthalmic surgeon Mr Sagoo told us. 

“We have to think of another strategy.”

I.A.M.

The possibility that Asa might receive IAM was mooted back in July, and since then the doctors have debated whether or not it was warranted.

IAM -- intra-arterial melphalan -- involves infusing a chemotherapy drug (melphalan) directly into the eye. It avoids some of the nasty side-effects that accompany whole-body chemo. It also means a higher dosage of the drug can be aimed at the eye.

Possible side-effects are squint, drooping of the eyelid, and dilation of the pupil. Usually these are transitory, but in some cases melphalan can damage the retina and lead to long-term loss of vision.

The long-term effects are difficult to know because the procedure is so new. First developed in New York in 2006, it has been performed in the UK since 2008.

Despite all this, the balance of risks and benefits is better for IAM than for the alternative, which is radiotherapy.

It will be done on Wednesday, September 19th, at Great Ormond Street Hospital.

Walk with Asa

Two days after the IAM, Selam, Asa, and I will walk across London at night to raise money for retinoblastoma research.

We’ll be walking together with other families affected by eye disease.

The money we raise will go directly to the Childhood Eye Cancer Trust (CHECT) -- an organization that supports research on more effective treatments for Rb.

Please consider sponsoring us. To find out more, or donate, see:

www.justgiving.com/walk-with-asa

Asa looking at butterflies