Skip to main content

Last week Asa's blood counts -- specifically, his neutrophil count -- didn't return to normal in time for him to undergo his eye exam and begin the 3rd round of chemo. Our medical appointments were pushed back a week, and in the meantime we've enjoyed a lull, waiting things out, and hoping the neutrophils are climbing, but also getting more time and space to reflect on life than we've had for the last couple of months.

The first time Asa’s neutrophils fell below 1.0, during the first cycle of chemo, we were thrown into a panic, and half expected him to break out in spots or immediately develop a fever.  Since then we’ve learned that the danger is manageable.

Neutrophils are one component of white blood cells, which indicate your body's ability to withstand infections.  The chemo drugs Asa is taking inhibit his ability to produce white blood cells, and consequently his immune system is seriously depressed for a while after each dose.  During the first cycle they plunged after 9 days, and then returned to normal by day 20 or so. This time they fell more rapidly and stayed down for longer. 

The implications for our day to day life aren't all that great: We've been taking precautions to protect him from infections, and we don't get out much: an excursion to the shops every now and then or a walk in the countryside when the weather's fine is about as adventurous as we get.

One of the precautions we take – keeping Asa (and sometimes Selam) penned in

This has become our normal routine now, so we're used to it.  And so far we've been lucky this time around -- no fevers, no scary coughs, no inflammation around the Hickman line.…

The downside of up

At first, the absence of crisis was a bit difficult to deal with.  When you've been putting out fires for weeks on end, it feels weird not to have an emergency on your hands.  And the first week or so after Asa's appetite returned, when he seemed to be pulling back and was acting (as he still is now) pretty much like any other toddler, saw us struggling much more than we'd expected, with worries bubbling up.  Your mind goes strange places under these circumstances -- you start wondering how long all this treatment is going to last.  How you’ll get your own career back on track.  How nice it would be to return to Ethiopia.  And what it would be like if Asa were really to lose his sight….

We started searching for more information from other families who had children with Rb, and how things had worked out for them. 

This has been a sobering exercise, and the stories make difficult reading.  The first 6 months of chemo are never the end of the road, at least in the cases we've heard about.  There are long periods when children are getting regular eye exams under anaesthetic, doctors are spotting new tumours, and children are receiving focused therapies like cryo, laser, and radioactive plaque… 

And sometimes, after all this, removal of one or both eyes is necessary.

The blog that we've learned most from is Fintan Tadgh's.  Maintained by his parents James and Fiona, it tells the story of their journey from Fintan’s diagnosis in 2007, when he was 6 months old, through an EUA last week, at the age of 4.

Fintan and his family have been through a lot, and learned a lot, over the years.  Following them through this, reading a year's worth of posts each evening last week, we empathised as they took a roller coaster ride through periods when it looked like Fintan’s cancer was on the ebb, through times when it was resurgent, and through many and various treatments, all of which they suffered with great strength and dignity.

At the moment, we can’t tell how closely Asa’s story will resemble Fintan’s.  We expect we’ll get more information when we see Mr Reddy, the consultant ophthalogist at the Royal London Hospital on Wednesday.  And while we’re hoping for good news on how the chemo’s working, we know that this won’t be the final judgment, and there are likely to be more surprises ahead.

For the time being, we’ve attained a certain amount of equanimity, and the past few days have been as good as any I can remember of late. 

Asa's been developing in new and surprising ways: imitating sounds, walking more confidently each day, fussing for our attention (are we spoiling him??), and kissing us (wetly and smack on the mouth).   

And we've felt more lighthearted than we have for a long time, one sign of which is our ability to laugh at things that would have caused us to freak out just a week or two ago -- for example, me tracking dog shit into the house one day… Not a great move at the best of times, but especially not when you've got a severely immune compromised toddler in the house. 


  1. We think of you folks all the time and wish you the best. Took old uncle Rick to folksing at Fredonia last week. Had old singing visitors from up north, friends of Pete Seeger. We talked with locals so much we missed the excellent snacks at intermission.HMH

    1. Thank you, Mac. Must have been a pretty awesome shindig to make you miss those snacks! Seriously, we appreciate you thinking of us. Hugs to Linda and yourself, and to old uncle Rick.

  2. Hey Jed, we're thinking of you every day and checking the blog religiously. Nice that you had a week's reprieve. I wish you and the family all the best for the exam tomorrow. I don't think you're spoiling little Asa too much, and I'm glad to hear these tender updates on his development. Beautiful photos too. We love you so much! Eric and Carolina


Post a Comment

Popular posts from this blog


Maybe it's all the to-and-fro'ing we've done on the trains between London and Birmingham for his eye exams, or maybe it's due to some kind of innate fascination with large moving things, but Asa loves trains.

I post these drawings of his partly to cheer myself up. It's been a pretty rough week, watching the US elect a con man as President.

Asa is an American citizen, and in 13 years time he'll be eligible to vote. I'm grateful that he's healthy, and that he stands an excellent chance of living a full life. But I worry about the world that he and his generation will inherit.

Let us pray for wisdom in our leaders, and for strength and resolve for those who resist them in the cause of the greater good.

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'…

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."

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 moni…