Skip to main content

Asa's eyes


When Asa was 5 or 6 months old, Selam noticed something about his eyes.  Under certain light conditions, they would reflect light back, the way cat’s eyes do. 

“This child has animal’s eyes,” she said.

Neither Kuri nor I thought much of it.  It was amusing, we thought; a trick of the light; not a cause for alarm.

When I arrived in Ethiopia 3 days ago, Selam had just come across some information online that suggested this could be a sign of disease.  Whiteness at the back of the pupils is a characteristic of retinoblastoma, a cancer of the eye.  It’s rare, but more common in infants than adults.

Another sign of the disease is that in flash photographs with “red eye”, the eyes of affected children appear yellow or white rather than red. 

Going through old photos, Selam noted that this “yellow eye” phenomenon showed up for Asa in photos from 3 or 4 months ago.

The earliest photo of Asa showing "yellow eye". Note the contrast with Asa's companion Mekdas, who has red eye.


Yesterday morning we took Asa to an ophthalmologist in Addis Ababa who examined his eyes and corroborated the possibility of retinoblastoma.  In the afternoon he got an ultrasound, which confirmed the diagnosis.  Present in both eyes, it’s more advanced in the left eye than the right.

Left untreated, retinoblastoma can kill within 2 years.  Each year, 40 or 50 children are diagnosed in the UK, and 1 or 2 die.  As with other cancers, the prognosis depends largely on the stage of the disease.

In Asa’s case, we don’t yet know the stage of the disease.  A CT scan today should tell us more.  At the least, his vision is likely to be impaired.

But Asa shows no other signs of illness.  He looks and sounds like a normal, healthy child: inquisitive, playful, alert to everything around him. 



Within the last two days he’s made great progress in getting around on two feet, yesterday walking across the living room holding his mother’s hand. 

He’s begun to say, “Mama,” using the word to call Selam to him, or as a response when she says his name.

It’s remarkable to be told by a doctor that your child losing his sight is a good outcome.  It will take some time for us to see things from this perspective. Right now, scenarios worse than blindness are difficult to contemplate.

On Monday we’ll fly to England to seek treatment there.

We’re hoping and praying that Asa’s sight will be preserved.  And when we reflect on it, we recognize that we would love him just as much had he been born blind.

Comments

  1. We love little Asa so much, and hope and pray for the best for him. Love to you all.

    ReplyDelete
  2. Jed - We are so sorry to hear this, and sending you three huge hugs from Delhi. We will be thinking of you during your time in the UK. Love, Em and Adam

    ReplyDelete
  3. Wow- mama's instinct sure paid off here! I am sorry you are facing a scary health crisis with Asa, but I'm very glad that it was caught and can be treated. I'll keep you in our prayers. He's a handsome little thing!

    ReplyDelete
  4. Jed - very sorry to read this. He is a beautiful little boy. We are thinking of you and hoping for the best. We send you lots of strength and love. Imogen x

    ReplyDelete
  5. Jed - so sorry to hear that you and Selam have received such difficult news. Sending prayers and thoughts that all goes well in the UK for you and your beautiful boy. Much love. Indira

    ReplyDelete
  6. In the photo with the tambourine, Asa's smile looks just like our grandfather Tommy's. My heart is with you & Selam as you take him to the specialists this week.

    ReplyDelete
  7. Jed and Selam
    We wish you a safe journey to the uk and send positive energy your way as you seek treatment. Asa is indeed fortunate to have strong and loving parents. We love you all. Cari Kenny and Miles

    ReplyDelete
  8. All three of you will be in our thoughts and prayers. Be brave. Peter and Betsy

    ReplyDelete
  9. Dear Jed,

    I'm Madi from India, My daughter has been diagonised with Retinoblostoma and currently we are undergoing treatment .
    It was found found when whe was 6-7 Month old when we were in USA , then we flew back to India for treatment .

    Can you please share your contact details .

    I wish speedy recovery of your kid .
    Thanks !
    Madi
    madisudhan@gmail.com

    ReplyDelete

Post a Comment

Popular posts from this blog

Afterlife

Spring. Bulbs and buds burst into flower. Things come back to life.
Ayya's namesake Anne was born in Spring, in Nashville, Tennessee, on March 25th (also known as Lady Day, or the Annunciation), the day when people in Medieval Europe thought the world began.


What threads connect Anne to Ayya? What affinities, beyond a name, and a fraction of shared genetic material?
As a young woman, Anne lived in Africa for five years. She had just married a Frenchman, Jean-Paul, and accompanied him to Cameroon, where he was to work as a teacher in lieu of military service. She was a new mother at the time (she carried my cousin Miriam with her), and it was there that she gave birth to her second child, Eric.
One of my favourite works of anthropology is a study of infancy in West Africa. Among the Beng of Cote d’Ivoire, children are understood to come from the Afterlife. In their way of thinking, people’s spirits enter a sort of limbo when they die. When babies are born, they gain passage back into l…

Cataract / VI

At about 4 o’clock this afternoon, Asa came around after being under anaesthetic for a cataract operation. It was the first time he’d had surgery – indeed, anything but routine eye exams – for more than a year.
Selam and I felt more anxious than we’d expected to be about this operation. It brought back memories of difficult times. Times – there had been dozens of them – when we waited, with a mixture of fear and hope, for news of how the procedure had gone. There had been a few times when we’d felt we we were close to losing him – like that time when he was on second-line chemo, and I was in Congo, and Selam told me over the phone that his Hickman line was infected. Or that time, during the third course of chemotherapy, when he went into anaphylactic shock.
Compared to those occasions, this cataract operation was low-risk. And, thank goodness, it went smoothly.
As Asa gradually regained consciousness, he put his fingers to the plastic shield taped over his right eye to protect it. Sela…

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'…