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Whipping out the wiggly



Last month, Asa celebrated his third birthday. On the same day, he started to write. He didn’t write much -- the words were dog and van. But if you saw him write them, you’d notice the pleasure he took in it -- in the alchemy of turning letters into living, moving things.

A little over a year ago, when his second birthday was approaching, he’d had a massive relapse. A week later he had a Hickman line inserted -- a sort of artificial umbilicus that provides easy access to the bloodstream -- in preparation for chemo. And although the chemo treatment lasted only four months, the line was left in, just in case more chemo, or radiation therapy, were called for.

Three weeks ago he had his Hickman line removed. The operation was carried out at Great Ormond Street Hospital, and it was fast. In a matter of hours we were on our way home again, and our little boy was no longer trailing rubber piping.

Naming the numbers on the hospital gown. 15 minutes later the wiggly was whipped out.


The absence of the Hickman line (or ‘wiggly’ as it’s often called) means Asa can start to do some things that children often enjoy, that have been off-limits to him for the last year. Like swimming. Or just splashing around in the bathtub. (The wiggly is vulnerable to infection, and has to be kept dry.)

And his dad doesn’t have to worry so much any more when he’s rough-housing.

More significantly, the doctors’ decision to remove the wiggly reflects some confidence that he may remain stable for a while.

A play therapist models breathing gas through a face mask before Asa’s most recent exam under anaesthetic.

The treatments Asa’s receiving now --  cryo and laser therapy -- are largely succeeding in keeping the tumours under control. Every three weeks, when he goes under anaesthetic, the doctors see new areas of activity; but for the past few months they have been small, and in parts of the eye that are easily accessible to treatment.

In comparison with the diagnosis that preceded his first birthday, and the relapse that overshadowed his second, this is good news indeed.

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Relapse. Birthday.

Wednesday'sExamination Under Anaesthetic yielded some unexpected news.
In Asa's left eye, which had been stable since the end of primary chemo in June, there were 4 or 5 new tumours, and one previously treated tumour that was growing slowly. There were also some new seeds.
In his right eye, moreover, the tumours that had earlier responded well to Melphalan had started to relapse.
These areas are at the front of the eye -- as the doctor put it, "almost where the retina finishes."
And the seeds that were there last time had not responded to the cryotherapy.


Treatment options
When Selam picked Asa up from the recovery room, both of his eyes were red and swollen from cryotherapy.
Cryo is a stop-gap measure: Since too much of it can cause retinal detachment, this approach doesn't hold much promise for controlling the tumour growth in the long term.
The area of tumour activity is also too wide for the more gentle kinds of radiotherapy -- such as radiation delivered through a …

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…

Hard questions

One morning recently, when we were trying to get Asa to put on his socks, he asked us, seemingly out of nowhere: “What does it have in it, my right eye?” It was clear he wasn’t in discomfort; it wasn’t that he had a piece of grit in there. He pointed up at his eye with his index finger.
“Well, it’s got jelly in it,” I said. “And a retina, and a lens. And lots of other things we didn’t know about two years ago.” “And what does it have in it, my left eye? Does it have a lens?” “No, your left eye doesn’t have a lens.” “What happened to it, the lens?” “The doctor took it out, because the eye was poorly.” “Was the lens poorly?” “It had gotten --” “Cloudy,” Selam offered. “Yes, it had gotten all cloudy, and you couldn't see well through it. So he took it out.” “Who took it out?”  “The doctor took it out.” “It doesn’t have any lens.” “No. That’s why you have to wear glasses sometimes, so you can see better. And that’s why Mummy patches your right eye sometimes. Because we want you to see as well as …