Skip to main content


Yesterday I wrote to our doctor to ask what the neuro specialists had said at the Multi-Disciplinary Meeting, on viewing Asa's MRI scans.

Did the meeting throw up any new information on what might be behind the head pain? 

And what was the implication of the gliosis that had showed up in the MRI?

The doctor's reply:
No - the scan was not thought to show any cause for his head pain – the area of gliosis is very small and non-specific and is probably related to minor trauma ?during delivery and is definitely not the cause of his pain.

One of the nurse practitioners wondered if the pain could be a manifestation of migraine which is sometime seen in 2-3 year olds.  However, we will check the IO [intra-ocular] pressure in the left eye at his EUA to rule out glaucoma first.

We're greatly reassured by this.

The question of what's causing Asa's head pain remains, but we're steadily eliminating some of the scarier possibilities. 

The next EUA is on Wednesday, 17 July.

For now, we're making the most of our freedom -- and a recent spell of good weather.

On the Millennium Bridge, July 10, 2013


Popular posts from this blog


Spring. Bulbs and buds burst into flower. Things come back to life.
Ayya's namesake Anne was born in Spring, in Nashville, Tennessee, on March 25th (also known as Lady Day, or the Annunciation), the day when people in Medieval Europe thought the world began.

What threads connect Anne to Ayya? What affinities, beyond a name, and a fraction of shared genetic material?
As a young woman, Anne lived in Africa for five years. She had just married a Frenchman, Jean-Paul, and accompanied him to Cameroon, where he was to work as a teacher in lieu of military service. She was a new mother at the time (she carried my cousin Miriam with her), and it was there that she gave birth to her second child, Eric.
One of my favourite works of anthropology is a study of infancy in West Africa. Among the Beng of Cote d’Ivoire, children are understood to come from the Afterlife. In their way of thinking, people’s spirits enter a sort of limbo when they die. When babies are born, they gain passage back into l…

Cataract / VI

At about 4 o’clock this afternoon, Asa came around after being under anaesthetic for a cataract operation. It was the first time he’d had surgery – indeed, anything but routine eye exams – for more than a year.
Selam and I felt more anxious than we’d expected to be about this operation. It brought back memories of difficult times. Times – there had been dozens of them – when we waited, with a mixture of fear and hope, for news of how the procedure had gone. There had been a few times when we’d felt we we were close to losing him – like that time when he was on second-line chemo, and I was in Congo, and Selam told me over the phone that his Hickman line was infected. Or that time, during the third course of chemotherapy, when he went into anaphylactic shock.
Compared to those occasions, this cataract operation was low-risk. And, thank goodness, it went smoothly.
As Asa gradually regained consciousness, he put his fingers to the plastic shield taped over his right eye to protect it. Sela…

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'…