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Mixed results

Last Wednesday Asa was put to sleep and underwent an eye exam under anaesthetic. 

The first since the beginning of the new chemo, the exam showed that the drugs have had a "partial effect."

Asa and dad at the Royal London Hospital, before the EUA

In Asa's left eye, the tumours responded well to the chemo. 

But in the right eye, there's been a slight increase in tumour activity.

And in the left eye there's a cataract developing.

A mixed bag

This was not what we'd hoped to hear.

We had reason to expect that the TVD (topotecan-vincristine-doxorubicin) combination would lead to shrinkage of the tumours in both eyes. 

And the appearance of a cataract -- a clouding of the lens -- at this stage is unusual: puzzling to the doctors as well as us.

While cataracts can be removed through surgery, cutting into the eye when there are active tumours inside is not advisable. So treatment for the cataract itself will have to wait until the tumours are stable.

The main risk in the near future is that the cataract may make it difficult to monitor the activity of the tumours in that eye. 

Sight and development

An optometrists' exam the day after the EUA suggested that Asa's sight has not gotten appreciably worse over the last two months.

It was a relief to hear this.

Indeed to us -- his parents -- it seems that his sight might be improving. 

But how could this be, given the equivocal changes in the tumours, and the cataract in one eye?

The thing that suggests improvement is that Asa is increasingly naming the things he's seeing -- a "doggie" on the other side of the street, "Mama" in a family photograph... 

Evidence of the extent to which Asa's childhood is now medicalized:

1. The first time he uttered the word "arm," a couple of weeks ago, was when a nurse was asking where she should place his blood pressure cuff. 

2. For several days after his last admission to hospital, he walked around proclaiming his most recent temperature reading (proudly and unprompted): "[Thirty] six [point] nine!"  

It’s a form of words he's heard us use all too often, as we monitor him for signs of fever.

In the last week, he's made great progress in discriminating letters and numbers, pointing at and naming them in books, on toys, and anywhere else he finds them.

Sharper-sighted, or just smarter?

But there's a danger here of confusing the ability to name things with the ability to see them.

The gains Asa seems to be making in visual discrimination are probably due more to a spurt in language development than to improvement in his eyesight. 

In other words, they're the result of potential that had been untapped while he was unnable to put names to things.

While his progress is wonderful to witness, we're also seeing signs now of how he's adapting to compromises in his vision. 

Playing with an electronic toy that speaks and spells words to him, he'll occasionally hold the letters close to his face, or bend down from the waist to position his eyes close to them, with a twist of the head to get the best part of his visual field working for him.


Despite the equivocal results of the chemo so far, the doctors have recommended proceeding with at least two more cycles (each lasting 3 or 4 weeks). 

The 3rd cycle was to begin on Monday, but Asa's had diarrhoea the last few days -- and he's lost a kilo in the last 2 months -- so he's been given a breather until later in the week.

Tomorrow he'll be reevaluated; we hope he'll prove to be stronger. 

With grandma Kuri in Whitechapel

With luck, the tumours in the right eye that haven't yet responded, simply need a more prolonged exposure to the drugs.

Jed is in Congo for the next several  weeks; Selam and grandmother Kuri are caring for Asa in London.


  1. All of you continue to be in my thoughts and prayers daily.

  2. I hope everything will be alright, keep on your strength.

  3. Keep strong Asa, Jed, and Salam :)

  4. Thinking of your family Jed. Safe travels, and prayers for Asa.

  5. Your thoughts on how medicalized Asa's life has been thus far was really evocative. His life experience is so different than most kids his age, but he seems to be thriving and developing as he should- what a beautiful thing! Charlotte spends a lot of time in doctors' office- I frequently see signs of the affect of that reality in her, but I like to think (hope?) it is part of what makes her a strong, amazing, spunky girl.

    I hope you have a safe trip and that Asa and Selam are doing well.


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