Skip to main content

Speaking and seeing

This week I got back to London after two months in Congo.

During the first weeks away I was able to talk with Selam by phone; after that we communicated mostly by text message. 

Asa didn't do all that well on the phone (when we'd talk, he'd often just laugh), but on my return I've discovered that he's made amazing progress in speaking.

His vocabulary reflects common preoccupations of children with animals (dog, cat, bunny, bear, and ait [Amharic for rat]) and vehicles (car, truck, plane, tractor, bus, and train). These things recur in his picture books and in toys; some of them he can also see through our front-room window, or on walks around the neighbourhood.

A lion driving a car... Asa digs this book.


Other words reflect experiences that are less common in childhood.

"Chemo", for instance, Asa uses to refer to a drip set. (He used the word when he last had a blood transfusion.)

And “ambulance” means something different to him than to many kids, because he’s used to riding to hospital in them.

A conversation

Yesterday, Selam and Asa were still in bed when I was about to head out the door, and I crawled over to them to say goodbye.

Asa opened his eyes and looked at my clothes.

"Yellow. Jacket."

"Yes, Daddy's wearing a yellow jacket," I said. "I'm going to ride my bike."

"Bike," he said. "Motorbike."

"Not a motorbike, just a bike," Selam corrected.

"Out?" Asa said.

"Yes, I'm going to work."

"Not yet."

This caught me by surprise.

I couldn't bear to say I was going right away.

"Not right away. Soon," I said.

"Back?" Asa asked.

"Yes, I’ll come back later."

That was by far the most complete conversation we've had so far.

The cataract

While Asa's language abilities have improved, his vision has deteriorated during the time I've been away.

As we learned in April, there's a cataract developing in his left eye. It's now visible in the form of a milky whiteness in the pupil.

The left eye was formerly his stronger eye. Now, apparently on account of the cataract, he's switched his preference to the right eye. When he's looking at books, or at images on his mum's smartphone (a favourite new toy), he'll cock his head and orient towards the right eye.

This right eye, however, has a centrally located tumour. And so the window he's peering through must be very small indeed.

Unexpected by the doctors, it’s unclear whether the cataract is a side-effect of the cancer, or the chemo, or independent of them.

Getting through chemo

Another wild card that came up in the past two months was a bacterial infection in the Hickman line, during the second cycle of chemo. This had us scared. Asa was in hospital for 8 days.

The Hickman line was eventually removed, and then reinserted a week later.

Thankfully the third and fourth cycles of chemo have gone relatively smoothly, without infections or long spells in hospital.

This is likely due at least in part to the presence of grandmother Kuri, who’s been living with us since April, and who provides such help around the house that Selam is able to concentrate better on keeping Asa happy.

Asa and grandmother Kuri, in the garden

Prospects

The prospects after the next EUA on June 19 are difficult to gauge.

There are at least three possibilities.

  1. The most optimistic scenario -- the chemo has caused the tumours to recede dramatically, and no more treatment is needed.

  2. Less optimistically, four cycles of chemo might have produced modest effects on the tumours, and two more cycles could be given before reevaluating progress.

  3. The least optimistic scenario is that the chemo hasn’t had any substantial effect, and we need to consider other treatments.

It impossible to know which of these scenarios we’ll face – or whether, instead, we’ll receive another surprise.

Comments

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.


Blind for a day

My mum likes to say that we learn about our bodies the way we learn about cars -- each time something goes wrong, you get acquainted with a new branch of mechanics.

As various treatments have been tried out on Asa, we've learned more and more about cancer and the eye.

The graph below summarises the treatments Asa's received these past 18 months.



Situations where retinoblastoma fails to respond to both primary and secondarychemo are rare, and even at one of the world's specialist treatment centres, a doctor might see such a case only once every few years.

 Support research on eye cancer here.
Right now we're in a place, therefore, where epidemiology and large trials have ceased to help much, and clinical judgment becomes very important.

As Dr Jenkinson -- the oncologist we met with in Birmingham -- said, "We're beyond the situation where there's a firm evidence base."

What's required then is very close attention to the details of the disease as it'…

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…