Asa's status, and the way forward

Yesterday Selam, my mother, and I took Asa to London for assessment by retinoblastoma specialists.  In due course I’ll describe the health workers we met there.  Our first impressions are that they’re brilliant people who wear their knowledge and expertise lightly.  Based on the examinations they carried out and on what they told us, we’re now in a much better position to understand the stage of the disease and the treatment that’s necessary.

The stage of the disease

The International Classification for Intraocular Retinoblatoma grades severity on a scale from A to E.  A represents the best outcome, where chances of preserving vision are very good, and E represents the worst, where the eye must be removed to prevent metastasis. 

Asa is a D in both eyes.  There are multiple tumours in each eye, and they are large.  One indication of their size is that, while ocular tumours are conventionally described in millimeters, those in Asa’s eyes were described to us in centimeters: The largest in the left eye is 1.9 x 1.3 cm, and that in the right eye is 1.3 x 0.5 cm. 

The tumour in his right eye, while smaller, is more disadvantageously positioned, already impinging on the crucial area between the fovea and the optic nerve, and interfering with Asa’s sight.  The long-term chances of saving vision are therefore greater for the left eye than the right.

The left eye, however, is far from well: there are seeds – tiny pieces of tumour – that have already split off into the vitreous area of the eye, and should these grow, they would likely cause blindness in the left eye too.

Retcam image of left eye.  The mass at the bottom is the largest tumour; the spots and clouds above are subsidiary tumours.

Had the disease in each eye been fractionally worse, the doctors would have recommended removal of Asa’s eyes.  We’re grateful that they did not.  And we’re grateful too that there’s no evidence of the cancer having spread outside the eye.

What treatment do they have for this?

For children with bilateral retinoblastoma (cancer in both eyes) the standard treatment is systemic chemotherapy to shrink the tumours, accompanied by more focused therapies to attack them once they have shrunk. 

The first round of treatments will begin next week, and last about 5 months.  This includes 6 cycles of chemo, each lasting 3 weeks.  After every 2 cycles, he’ll be evaluated, and lasers or cryo may be used to attack the tumours. 

During the chemo, Asa is going to be delicate: We’re going to have to take special care to protect him from infection and to preserve his appetite.  His blood counts will need close monitoring, and if they plunge very low he may need blood transfusion.

A team effort

To pull all this off, we’ve been offered the help of a large team, including 

-- community nurses who will visit Asa at home each week to check blood counts and change the dressings on the shunt that will be used to funnel drugs into him;

-- paediatricians at our local hospital, whom we can call upon to manage any infections that Asa picks up along the way;

-- oncologists and ophthalmologists in London. 

We’ll also be relying on Asa’s own resilience and adaptability.  On love and support from friends and family.  And on God.

With help from these sources we pray Asa will overcome the cancer and retain his sight. 

There’s a long road ahead.