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Giving thanks

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


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.




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…

One Rb World

Earlier this month, we took part in a conference on retinoblastoma in global perspective. The One Rb World conference brought together people from Europe, North America, the Middle East, and several countries in Africa -- all working with Rb, or themselves touched by it. The participants were split roughly half and half between medical professionals and parents of children with Rb or Rb survivors (people who themselves had Rb as children). Most of the presentations during the 2 days of the conference were by doctors, but about half of the time was allotted for discussion, which gave space for testimonials and suggestions for improvements in the quality of care from parents and survivors. More than once, mothers wept telling their stories -- of the scepticism they'd encountered when first seeking help; of delays in diagnosis, and doctors' egos getting in the way of efficient care. One of the most memorable presentations was on the psychological effects of Rb treatment -- how the rep…

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 wa…

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. “Itisn'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 m…

Advice for surviving chemo

Have you ever had the experience of coming up for air after working hard on something for a long time, and being surprised to find that other people have been going about life as normal?
That’s what it’s been like finishing chemo.
During chemo, the thought of taking Asa to a nursery, or on a train (crowded environments where he could pick up an infection) would have made us giddy.
Now, we can go out like normal families do, and there's rarely a day when we don't take Asa on an excursion by car, bus, or train.


Before the memories fade, we'd like to share a few things that might be useful for other families with children going through chemo.
Some tips
In no particular order, these were things we found useful for keeping Asa clean or safe:

 a play pen, to keep him in a dirt-free space

grapeseed oil & cotton balls for wiping his bottom during nappy changes (much less likely to irritate skin than wet-wipes)

an in-ear thermometer to check temperature (quicker and more convenient t…

How Asa sees

We got three new pieces of information this week – about Asa’s vision, the state of the tumours in his eyes, and the genetic basis of his condition.
1. How Asa sees
On Tuesday afternoon, an orthoptist tested Asa’s vision. She waved toys in front of him to assess how well he could track moving targets, and used a set of cards with images of varying clarity printed either on the left or right, or top or bottom, to see whether he could discriminate between image and blank space.
Taken together with what we know from other examinations, the results suggest that Asa’s vision is worse than we’d supposed based on his everyday behavior.
In the right eye he probably has good vision only on the periphery, and in the left eye his vision is probably blurry.
The reason is that the right eye has a centrally located tumour, and in the left eye – while the tumours are located lower down, affording a decent visual field – what he sees is probably blurred on account of retinal detachment.
Squint with your …

The end of chemo

Asa's last dose of chemo was given 6 weeks ago, and he's now largely recovered from the side effects -- he's comfortable, his appetite has returned, and little hairs are sprouting all over his scalp.
I’ve been remiss in sharing this news, in part because as soon as the chemo finished, Asa developed chicken-pox, and we were thrown back into emergency mode.
He broke out in spots on May 28, and at that point, his immune system was still compromised, and we were afraid the chicken-pox was going to be unusually severe.
On doctors' advice, Asa was kept in hospital for 10 days on IV Aciclovir, a drug that slows the reproduction of the virus.
In the event, the chicken-pox was mild, and the spots didn't seem to cause him much pain.
There was still some systemic imbalance that needed to be sorted out afterwards: Until last week, his potassium levels were still low, and we continued giving him supplements through his NG tube.
But by last Saturday, he had normalized, and we pulled o…