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Now we are four

The world is overdue an update on Asa.

Since last we wrote, he's begun capoeira classes, learned to ride a bicycle, and had five doses of chemotherapy drugs injected into his right eye.
 He understands now that other children don't have to go through all of these things; not everyone has poorly eyes. But remarkably, he protests very little. He's easy-going, and he doesn't bear grudges (at least so far).


New hope

As a treatment for Rb, the most recent procedure -- intra-vitreal injections of melphalan -- is relatively new. Pioneered by the Japanese, and refined in the US and Switzerland, it's been tried on only about a dozen children in the UK so far.

Since the last dose was given in November, he's had three exams under anaesthetic. The results have been as close to 'all clear' as we've had in the past three years. At each exam, the doctors have seen some new tumour activity in the right eye, but it's been discrete and in a place that's accessible to local treatment (around 6 or 7 o'clock, as the doctors say: towards the bottom of the eye).

This contrasts with the situation before the injections, when there were seeds diffused throughout the eye, threatening to grow out of control.

We're hopeful things are settling down.


A new world

In addition to battling this disease -- or playing host to the battle that the doctors are waging in his eyes --  Asa is of course going through the more ordinary dramas of childhood.

Several months ago, he started nursery.

For a few mornings a week at first, and then for full days -- nine to three thirty -- he joined a new society, the confraternity of Other Children.

Asa and his buddy Silas

This is a big transition for any child, but we were particularly curious about how Asa would take it. For most of his life, he'd been living a secluded existence, sheltered from others during the frequent rounds of chemo, and with a fairly small social circle among our neighbours and friends in London.

During the first weeks at nursery, he picked up the names of his classmates and would sometimes speak of them at home. Selam arranged play dates, and he'd play alongside his peers. But not until a couple of months ago did he truly *get* them.

In a period of a week or two, other children came alive for him, as people whose worlds he could step into -- and they into his. This was a great revelation, and now the intensity of interaction, the excitement of shared play, reached fever pitch.

As soon as this is in the past, it's easy to take it all for granted. But for a long time we were hoping and waiting for it, with that special flavour of anxiety characteristic of parents of children with long-term health problems. And when it came we were delighted.


A short leash

Our feelings on this are probably also informed by the fact that we have seen more of Asa's childhood than parents whose children are healthy. Selam can still count on one hand the number of times, since he turned one year old that she's been away from Asa for more than six hours at a stretch. And from taking time off work when he was on chemo, and arranging my schedule around hospital visits, I've seen more of him than many dads do.

Today he turns four.

On Saturday a dozen or so of his new friends will pile into the soft play area of the Peckham Leisure Centre to charge around and blow off steam. And then we'll herd them into another room for cake and a song.

We've asked guests not to buy presents (he has too many toys already), but instead to consider a donation for children with eye cancer in Ethiopia, through this website:


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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…