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Showing posts from June, 2012

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…