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The first cycle / Ethiopia

I got back from Ethiopia two weeks ago, and went straight from the airport to the hospital.

Asa had been admitted two days before with a fever, and according to protocol he was put on IV antibiotics, to be kept under observation until 48 hours after the fever subsided.

I found him and Selam in good form, Asa chatting away (sometimes incomprehensibly) to anyone in range and -- something new, since I'd been away -- saying “Thank you” for the least courtesy anybody paid him.

At the Queen Elizabeth Hospital in Woolwich.
I’d sat the doll on the side of the bed; Asa quickly adopted the same position.

That was on Thursday.

By the weekend we were all back home together.

Second-line chemo, so far

On balance, the first cycle of this second course of chemo went better than we’d feared. There were no mouth sores, no need for an NG tube, and only one day of vomiting.

But it didn't go quite as smoothly as we’d hoped. 

There were 3 episodes of infection: a bout of conjunctivitis which gooed up his eyes, and 2 other infections that caused fevers. 

And he needed 3 blood transfusions: two for platelets and one for red blood cells.

We don't yet know what effect the drugs have had on his tumours.

For that we have to wait until the next EUA, in 3 or 4 weeks time.

A heart murmur

When Asa was admitted with the second fever, doctors detected a heart murmur.

Asa was anaemic at the time, and the murmur was put down to that.

But on reexamination this week -- with the infection gone and his blood counts back to normal -- the murmur was still there.

One of the chemo drugs, Doxorubicin, can affect heart function. To check whether he was fit to receive it, Asa received an echocardiogram exam a month ago.

At that point he was given the all clear.

Might the drug have caused some damage to his heart since then?

Another echo yesterday suggested that his heart is normal.

We hope the murmur is innocent.
Meetings in Ethiopia

During my visit to Ethiopia, I met with some families whose children are affected by Rb, and doctors who treat the condition.

“It's really devastating to think about,” said Dr Emebet Girma, a doctor who runs the Ophthalmology Department at the main referral hospital in southern Ethiopia.

“I send children for chemo [in Addis Ababa], but I don’t know if they get it. I do exenteration, but I don’t know [if they’re going to make it].”

Exenteration is a drastic operation that involves not only removing the eye but also cutting away surrounding tissues.

It’s done in cases where the cancer has spread beyond the eye, and where there aren’t better options.

Dr Emebet sees more than 100 cases of retinoblastoma per year in Awasa Hospital. 

That compares with about 50 per year in the U.K.

The majority who turn up in Awasa are children whose eyes bulge from tumours that are very advanced.

Success stories

More hopeful was the meeting with families in Addis Ababa whose children have received treatment for Rb.

These are success stories.

But that’s not to say that things have been easy for them.

The three families I met had to leave Ethiopia to get the treatment their children needed -- traveling to Nairobi, and in one case to the U.S.A.

The children -- Abel, Bisrat, and Edelawit -- are now apparently cancer-free, and full of life.

It was great to meet them and their families.

Meeting of people concerned about retinoblastoma, in Addis Ababa, February 2013: L-R: Jed, Emebet Mammo, Etseganet, Getahun, Abel (in Getahun’s arms), Netsanet, Ermias, Bisrat (in Ermias’ arms), Dr Abu, Edelawit, Mekonnen.

We’re all keen to do something to help improve the state of Rb surveillance and treatment in Ethiopia.
At the same time Selam and I are reminded of how lucky we are that Asa can get the treatment he’s receiving in London.

Thanks to my mum and dad, and to all our neighbors -- especially Luke & Sophie, and Fireweyne -- for keeping Selam and Asa company these past weeks.


  1. I wish London and Tuscaloosa were 10 miles apart, so Jerry and I could be practical, frequent help. We send you much love.


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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.