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.

Notes: IAM = intra-arterial melphalan. Primary chemo = vincristine, etoposide, carboplatin.
Secondary chemo = topotecan, vincristine, doxorubicin. On diagnosis, both eyes were stage D
in the International Classification System.

Situations where retinoblastoma fails to respond to both primary and secondary chemo 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's manifested in Asa.


Tumour topography

"The retina is like the inside of an egg-cup," the ophthalmologist, Mr Parulekar, told us.

In Asa's case most of the tumours in the right eye are around the rim of the egg cup. Not all the way around, but covering approximately half of the circumference. In places, they extend down towards the bottom of the cup.

But the fact that the majority of the tumours are on the periphery of the retina -- and not way at the back or floating in the vitreous jelly of the eye -- means they may be treatable with cryotherapy.

Sometimes referred to as TTT or "triple freeze-thaw", this technique involves inserting a probe into the eye and freezing the tumours.

Support the development of improved treatments for eye cancer. 

Blind for a day

Asa had received cryo before, but never as much as he did on Friday.

When we picked him up from the recovery room, his eyes were shut tight and his right eye, which had been treated, was puffy.

On the way back to the train station, we passed a helicopter, which he would have been delighted to see.

Thankfully the air-ambulance was not there on our account.

But he kept his eyes closed for about 24 hours -- all through the journey home, and for most of the following day.

It was sad to see how isolated he was during this period of blindness.

But marvellous to see his excitement, the next day, after he opened his eyes.

In the playground, the day after cryo. Asa opened his right eye (the only one that's currently useful)
less than half an hour before Selam took this photo.

The new plan is to use more cryo, possibly accompanied by chemo, to try to shut down the tumours in the right eye.

So Friday's experience will likely be repeated in coming weeks.

 
Where will this lead?


Will the cryo will succeed in controlling the tumours? 

And, if chemo's required, which specific drugs might be used?

We don't know.

But at least it now seems firmly established that radiotherapy or enucleation are not the only options.

Asa has a fighting chance of maintaining his sight without recourse to a treatment which would significantly raise his risk of later cancers.

The treatments that are open to us are not, however, without their own risks.

• Aggressive cryo carries a risk of retinal detachment, which can impair vision.
   
  
• More chemo would mean increased risk of longterm side effects from the drugs (including hearing loss for carboplatin, and cardiac damage for doxorubicin).
  
  
• Operating on the cataract in Asa's left eye (about which more soon) would involve a small -- but real -- risk of the cancer disseminating beyond the eye.
   

More generally, after a year and a half of living from month to month, never knowing what might be uncovered at the next exam, we're entering a period of even greater uncertainty -- when the prognosis may change from week to week. 

Or, as it did this past week, from day to day.

 Please support our fundraising for eye cancer research. 

http://www.justgiving.com/walkwithasa2

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 centre -- on Friday.

And yesterday morning we were able to go to the Quaker meeting again, and share our joy: That a new set of possibilities had opened up in terms of treatment.

While much uncertainty remains, the choice before us is no longer so stark.

In short, there's new reason for hope.

Thank you to everyone who offered us advice, encouragement, or prayers.

On September 20th, Selam, Jed, and Asa will walk across London at night in support of eye cancer research. Please sponsor them here.