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Starting chemo

On Sunday we took Asa back to London to begin chemotherapy.  The first doses of drugs were given on Monday, and we returned home late the following day.  During the stay in hospital we had an opportunity to reflect on the pros and cons of Asa's condition versus other kinds of cancers, and the treatment regimen he's on.

One thing was vividly impressed on us: Asa isn't the first or the last child to have cancer; his isn't the worst or the best case that's been seen; and the treatment regimen he's on isn't the most or the least radical that's been used.  In short, we gained a sense of the ordinariness of what, a week ago, seemed like an exotic diagnosis.  And the normality of a course of treatment that, after the doctors announced it a few days ago, seemed to make removal of his eyes look like an attractive option. 

"Everyone here has a Hickman"

A Hickman line is a port used for delivering drugs directly into veins, and for taking blood out of them.  It’s like a permanent IV – one that can be kept open for months or years, with a plastic stopper to cap it.  In Asa’s case the plastic tube enters his body on the left side of his torso, and snakes under his skin to the jugular vein in his neck, where it enters his bloodstream.

Asa's Hickman line, exposed during a change of dressings.

On our first evening in the hospital, Malachi, an 8-year-old boy whom we met outside the ward kitchen, pulled his shirt up to show us his Hickman – his 'wiggly', as the nurses call it – as if it was nothing at all. He looked very much like a normal 8-year-old boy, cautious around strangers, but with a brightness in his eyes that showed he was observing you carefully.  He had been on the ward for almost a month, receiving treatment for cancer.

Angela, a nurse who has seen dozens of children with cancer, noted that compared to leukaemia and other childhood cancers, retinoblatoma has a very high cure rate, and requires less radical treatment. 

Angela's take on retinoblastoma: 

"If you've got to have cancer as a child, this is the one to have."

A cure worse than the disease?

When we first thought about Asa's treatment options, systemic chemotherapy seemed like the least attractive choice.  The drugs are toxic – the technical term for them is cytotoxins, cell-killers and the common side effects, including hair loss, impaired intestinal function, and erosion of the mucosa of the mouth, are directly related to their function of short-circuiting the growth of rapidly-developing cells throughout the body, including but not limited to cancers.

Samples of Asa's blood, and a syringe of Vincristine,
one of the three chemotherapy drugs he's taking.

Giving repeated doses of these drugs to children who are undergoing rapid development seems like madness, and a recipe for long-term health problems. 

Perhaps, in the future, it will be seen as madness.  But at the moment there are no other good options.  In Asa's case, the tumours in his eyes are too big to be treated any other way. If his eyes were removed, he would still be advised to take a protective course of chemo to mop up cancers that might be hanging out elsewhere in the body – and the dosage and duration would be the same as for the chemo that would have been prescribed first off. 

Rates of bilateral enucleation (removal of both eyes) after chemo are low these days, our doctor tells us – around 2% – so preemptive enucleation has nothing to recommend it.  And lasers and other more focused therapies just aren't adequate to the job – unless, that is, the tumours are shrunk by chemo first.

That, then, is the course of therapy he's getting: Chemo to do the tumour-shrinking, followed by focused therapies to attack the tumours when they're down.

Frequent blood tests are going to be necessary to track progress over the coming months. And the progress we expect to see is of a strange sort. Low blood counts are desired, because they are direct indications of the drugs' action.  At the same time, they will serve to show how Asa's body as a whole is being assailed by these toxins, with results being anemia, vulnerability to infections, and liability to spontaneous bleeding. 

A long course of treatment

One of the unpleasant implications of all this for Asa is that he will be a patient for much of his childhood – under close medical surveillance until 5 years and beyond.  For the next 6 months he will be spending more time in hospital than in nursery school.

The unpleasantness of this prospect is tempered by the fact that the medical system here in the UK is a particularly humane one. Regular home visits by community nurses will minimize the amount of time he has to spend in hospital.  And technological and clinical innovations make therapy less painful than it used to be.

The Hickman line is a case in point: On Monday night, I witnessed a nurse pushing a dose of anti-nausea drugs down Asa’s Hickman line while he slept.  If he didn’t have the Hickman, this would have required a painful injection, or the equally painful installation of an IV catheter.  As it was, Asa barely stirred as the drugs entered his veins.  Changing his nappy is now a more invasive procedure than administering intravenous drugs.

None of this makes the immediate challenge of helping Asa through chemotherapy any smaller.  Two days after the drugs entered his bloodstream, he is already clearly suffering.  As I’m writing this, at 3 AM on Thursday, Asa has been crying most of the night and with a new intensity; and despite frequent attempts to get him to eat, he’s accepted very little food since we returned from hospital.

Amidst all this we try to bear in mind that his suffering is less than that of other children. 

But it's scant consolation, faced with a child who's suffering, to reflect that other children suffer even more.

A postscript on developmental effects of chemo in infancy: Dr Judith Kingston, the consultant managing Asa's care, has seen hundreds of children with cancer go through chemo, and attests that long-term effects on development are very rare.  The oldest children who went through this as infants are now in their 20s, so there's still a possibility of later-life problems.  But there’s reason to be hopeful.  If anyone has good information on this, please let us know.


  1. Jed, thank you so much for your clear, full explanations of, not only the procedures, but of the stuff that we who are watching helplessly want to know: how little Asa is handling all the handling, what are the long-term effects, how you and Selam are understanding the inevitable suffering that your beloved child has to face, and the facts about the other children who have similar or worse diagnoses. I continue to pray for Isaac, for his parents, for the doctors, and make all my friends do the same.

  2. My heart breaks for little Asa and for you all, having to go through this. No child or parent should have to bear such an experience. I'm glad that you are in the UK, and with family. My constant prayers and thoughts go with you. Love,


  3. So much to take in, and I know how hard it is to see your little guy suffer from the medicine that will ultimately save him. It seems you are finding balance between the good and the bad. When Charlotte was in the NICU, Tom and I measured her experiences as a work in progress proposition, with steps forward and steps backward. It was so important not to let setbacks or gut reactions take over the bigger picture, but that was also very hard. I just hate that your family is going through this, but after the months we spent in the NICUs, I can tell you first hand that children are incredibly tough, resilient, and stoic. You will come to see Asa as your hero for what he will endure; I'm still in awe of Charlotte's strength. Please know there are a lot of people cheering your little guy on and sending prayers to him, you and Selam as your family tackles this challenge.

    Andrea (from grad school)


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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.