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Showing posts from August, 2013

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'…

New hope

In the past week, Selam and I sought advice from every channel open to us on what might be done to save Asa's sight and minimise collateral damage from treatment.

We made phone-calls and wrote emails; we read scientific papers about the long-term impacts of radiotherapy; and on Sunday we went to our local Quaker meeting and asked for guidance on how to proceed.

To recap, Asa's predicament is as follows: He has had a relapse in his right eye, and a cataract has deprived him of sight in his left eye.

The choice we'd been offered was between radiation therapy, with the corollary of increased risk of other cancers in adulthood, or removing both eyes.

But the emailing and phone-calling paid off.

The experts we'd consulted -- in the USA, Canada, and Switzerland -- didn't feel that radiation was necessary, and on that basis the London team recommended a full review in Birmingham.

Asa was examined at Birmingham Children's Hospital -- the UK's other dedicated Rb c…