Skip to main content

Giving thanks

Yesterday Asa had an exam under anaesthetic at the Royal London Hospital.

tearing up the waiting room

There was a long wait while he was in the operating theatre. And when Selam picked him up from the recovery room, his right eye was red and swollen.
Had the IAM not worked again? 

Perhaps they'd used cryo instead -- which causes swelling…?

A turn of events

When the doctors came around to debrief, they were upbeat:

"We're happy with the way he responded to the IAM," they said. 

The tumours they’d seen last time had "flattened out" since the second dose of IAM, they explained.

They had used cyrotherapy -- but that was to treat a small area on the roof of the eye.

Asa in regulation kimono

This is a huge relief.

As soon as a space is available on the list, they'll proceed with a third dose of IAM -- probably either next Wednesday or the following week.

Counting our blessings

Today Americans are celebrating Thanksgiving.

I’m in the US right now -- to attend an anthropology conference in San Francisco and an African studies conference in Philadelphia.

But today I’m spending time with relatives in Alabama.

I just skyped with Selam and Asa, and both of them looked well.

We have much to be thankful for!


  1. That's great that the medical protocol seems to be working, but I know it must be terribly nervewracking! I'm sorry I won't be at ASA this year to catch up with you- enjoy your time back in the US!

    1. Thanks, Andrea! I'll miss you at the ASAs. Great to see how well Charlotte's doing.


Post a Comment

Popular posts from this blog


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…