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.

Asa's status, and the way forward

Yesterday Selam, my mother, and I took Asa to London for assessment by retinoblastoma specialists.  In due course I’ll describe the health workers we met there.  Our first impressions are that they’re brilliant people who wear their knowledge and expertise lightly.  Based on the examinations they carried out and on what they told us, we’re now in a much better position to understand the stage of the disease and the treatment that’s necessary.

The stage of the disease

The International Classification for Intraocular Retinoblatoma grades severity on a scale from A to E.  A represents the best outcome, where chances of preserving vision are very good, and E represents the worst, where the eye must be removed to prevent metastasis. 

Asa is a D in both eyes.  There are multiple tumours in each eye, and they are large.  One indication of their size is that, while ocular tumours are conventionally described in millimeters, those in Asa’s eyes were described to us in centimeters: The largest in the left eye is 1.9 x 1.3 cm, and that in the right eye is 1.3 x 0.5 cm. 

The tumour in his right eye, while smaller, is more disadvantageously positioned, already impinging on the crucial area between the fovea and the optic nerve, and interfering with Asa’s sight.  The long-term chances of saving vision are therefore greater for the left eye than the right.

The left eye, however, is far from well: there are seeds – tiny pieces of tumour – that have already split off into the vitreous area of the eye, and should these grow, they would likely cause blindness in the left eye too.

Retcam image of left eye.  The mass at the bottom is the largest tumour; the spots and clouds above are subsidiary tumours.

Had the disease in each eye been fractionally worse, the doctors would have recommended removal of Asa’s eyes.  We’re grateful that they did not.  And we’re grateful too that there’s no evidence of the cancer having spread outside the eye.

What treatment do they have for this?

For children with bilateral retinoblastoma (cancer in both eyes) the standard treatment is systemic chemotherapy to shrink the tumours, accompanied by more focused therapies to attack them once they have shrunk. 

The first round of treatments will begin next week, and last about 5 months.  This includes 6 cycles of chemo, each lasting 3 weeks.  After every 2 cycles, he’ll be evaluated, and lasers or cryo may be used to attack the tumours. 

During the chemo, Asa is going to be delicate: We’re going to have to take special care to protect him from infection and to preserve his appetite.  His blood counts will need close monitoring, and if they plunge very low he may need blood transfusion.

A team effort

To pull all this off, we’ve been offered the help of a large team, including 

-- community nurses who will visit Asa at home each week to check blood counts and change the dressings on the shunt that will be used to funnel drugs into him;

-- paediatricians at our local hospital, whom we can call upon to manage any infections that Asa picks up along the way;

-- oncologists and ophthalmologists in London. 

We’ll also be relying on Asa’s own resilience and adaptability.  On love and support from friends and family.  And on God.

With help from these sources we pray Asa will overcome the cancer and retain his sight. 

There’s a long road ahead.

Asa's eyes

When Asa was 5 or 6 months old, Selam noticed something about his eyes.  Under certain light conditions, they would reflect light back, the way cat’s eyes do. 

“This child has animal’s eyes,” she said.

Neither Kuri nor I thought much of it.  It was amusing, we thought; a trick of the light; not a cause for alarm.

When I arrived in Ethiopia 3 days ago, Selam had just come across some information online that suggested this could be a sign of disease.  Whiteness at the back of the pupils is a characteristic of retinoblastoma, a cancer of the eye.  It’s rare, but more common in infants than adults.

Another sign of the disease is that in flash photographs with “red eye”, the eyes of affected children appear yellow or white rather than red. 

Going through old photos, Selam noted that this “yellow eye” phenomenon showed up for Asa in photos from 3 or 4 months ago.

The earliest photo of Asa showing "yellow eye". Note the contrast with Asa's companion Mekdas, who has red eye.

Yesterday morning we took Asa to an ophthalmologist in Addis Ababa who examined his eyes and corroborated the possibility of retinoblastoma.  In the afternoon he got an ultrasound, which confirmed the diagnosis.  Present in both eyes, it’s more advanced in the left eye than the right.

Left untreated, retinoblastoma can kill within 2 years.  Each year, 40 or 50 children are diagnosed in the UK, and 1 or 2 die.  As with other cancers, the prognosis depends largely on the stage of the disease.

In Asa’s case, we don’t yet know the stage of the disease.  A CT scan today should tell us more.  At the least, his vision is likely to be impaired.

But Asa shows no other signs of illness.  He looks and sounds like a normal, healthy child: inquisitive, playful, alert to everything around him. 

Within the last two days he’s made great progress in getting around on two feet, yesterday walking across the living room holding his mother’s hand. 

He’s begun to say, “Mama,” using the word to call Selam to him, or as a response when she says his name.

It’s remarkable to be told by a doctor that your child losing his sight is a good outcome.  It will take some time for us to see things from this perspective. Right now, scenarios worse than blindness are difficult to contemplate.

On Monday we’ll fly to England to seek treatment there.

We’re hoping and praying that Asa’s sight will be preserved.  And when we reflect on it, we recognize that we would love him just as much had he been born blind.

Taking the rough with the smooth in Addis Ababa

Asa has now spent a little more than half of his life in Ethiopia: he left the US in April at 2 months of age, and turned 4 months old last week.  

Asa's foot, as a newborn, and at 4 months

When I rejoined Asa and Selam in May, Asa was a little over 3 months old and had adapted effortlessly to his new surroundings.  Our one-bedroom apartment in Addis Ababa, as far as we could tell, seemed just as comfortable to him as Aunt Sylvia's spacious house in Atlanta.  

For the first two weeks after they arrived, Selam spent most of her time at home with Asa.  Since then she's returned to her job at the UNHCR, although she usually comes home at lunchtime to breastfeed. 

I've taken over from Kuri some of the work of caring for Asa during the days. I've  gotten the hang of changing his nappies, warming bottles and feeding him, putting him to sleep when he's drowsy, and -- when other tricks don't work -- carrying him outdoors in a sling, which never fails to calm him.

More recently I've been leaving home during the days, and working at the UNECA library.  I've begun to think of the library as my office.

We've fallen into a rather comfortable routine. 

A run-in with a bigot

Our comfortable routine was interrupted one weekend soon after I'd arrived, when Selam and Asa and I were the target of a silly joke, and then some spiteful insults.  

It was late afternoon on a Saturday and we were out strolling in our neighbourhood, on our way home from the shops.  We walked towards of a group of young boys playing in the street, and as we approached, a ball rolled towards and past us. 

"If I weren't carrying Asa, I'd jump up and kick that back to them," I said to Selam.  I was carrying Asa in a sling on my chest. 

We walked through the midst of the group, and as we passed them, one of the boys kicked the ball at close range, and it hit Selam hard in the back.

"Give me the ball," Selam had heard one of the boys say just beforehand; it seemed that this boy had kicked the ball at her deliberately. 

Selam picked up the ball and shouted to the boys, who had come running, that she was taking it. 

As we walked on, a small boy dogged our heels, pleading with Selam to return the ball, which she refused to do. 

As we reached our block, a heavy-set man with a glass bottle in his hand intervened in the argument.

"Give it back to him," he said brusquely. 

"I won't," Selam said.  "They kicked it at me."

"It's nothing," he said. "Give it to them."

"No," Selam said.  "Who are you to tell me that?"

"Give it to them."

A short man who works in the pizzeria opposite our apartment building joined in, trying to persuade Selam to do as the man said.  "They even break people's car windows sometimes," he said.  "They don't mean it…."

"Why should I give it to them, just because he tells me to?" Selam asked.

"I could beat you," the man said.

"Yes, you're a big man.  That doesn't mean you're right," Selam said.

As the argument continued, two other men who were in a cafe opposite where the boys had been playing joined in.  They confirmed that the boy had kicked the ball at Selam on purpose.  The children should know better, they said.

"It doesn't matter," said the man, whose name, we later found out, is Tesfay. 

"It does matter," Selam says.  "My child could have been hurt."

"He's not the only child in the world," Tesfay said.

"Was it your child who kicked the ball?" she asked.

"They're all my children," he said.

"How would you like it if you and your wife and child were out walking, and someone kicked a ball at you?" one of the men who had been sitting at the cafe asked.

"She's a child too," he said, referring to Selam -- "She's their equal." 

This was the one statement of Tesfay's that I recognised as an insult at the time.  The argument was in Amharic, and it was fast-paced; in these circumstances my ability in the language fails me. 

"She's not a child, she's my wife!" I thought of saying.  But by the time the words had formed in my head Tesfay had snatched the ball from Selam's hands and thrown it back to the children, and the argument had moved on.

The two men who had intervened in our defence urged us to leave, and we did, while they continued to argue.

  *  *  *

After this incident, Selam and I were sad and angry.  I wanted to find out which apartment Tesfay lived in, and go and confront him.  Selam thought this would make things worse, and persuaded me against it. 

We talked with other neighbours about the episode, and they were universally supportive of us, and angry at Tesfay. 

If there‘s a positive side to the incident, it's that the men at the cafe, who saw the boy kick the ball at Selam, took it upon themselves to get involved in the argument.  They could have sat there minding their own business.  But they decided that their neighbours' business was their business: that kids shouldn't grow up thinking they can get away with being rude to strangers, and adults shouldn't get away with acting like overgrown bullies. 

That's one sign of a healthy community.

Sadly, there's bigotry in every culture.  In Ethiopia, one of the most common forms it takes is disrespect for women. It was immediately clear to Selam that Tesfay's behaviour was rooted in prejudice against local women who form relationships with foreigners.

For someone who harbours this prejudice, the sight of an Ethiopian woman and a white man walking through the neighbourhood with their baby must seem like provocation. 

Sadly that remains the case for mixed-race couples in many other parts of the world too.

In the weeks that have passed since the incident, the boys who used to play football in our street have gone elsewhere to play.  Which saddens me a little, since I like seeing children playing. 

And we've gone about our lives as usual.  Which is probably the best thing we can do.

Asa's response

Appropriately, it was about the time that we had our encounter with the unfriendly neighbour that Asa began to stick out his tongue. 

Soon afterwards his spine stiffened somewhat, and his arms began to gain strength.  Now, with some effort, he can sit by himself -- albeit resting much of the weight of his upper body on his arms.

His vocalisations have increased in frequency and diversity too, as if to meet the verbal challenge of a sometimes unkind world. 

"Haaaaa,"  he says.  "Aaawooo." 

And still, when he's unhappy, "Emmmmbii!"

But most of the time he's happy.  He smiles at almost anyone who comes into range, and occasionally he laughs.

Apart from the argument with our neighbour a few weeks ago, there's been little stress in Asa's life.  His days are spent in turns sleeping, feeding, and being sunned on the veranda.  Being kissed and jiggled and bathed and fussed over. 

In short, life is pretty good.

His only experience of acute physical pain has been needle jabs when he's gotten vaccinations. 

These jabs are for his own good -- they'll protect him in the future.

But one lesson of the run-in with our neighbour is that, as much as we want to, we can't shield Asa against all the foolishness in the world.  We can't vaccinate him against every threat.

Some of them, Asa will have to learn to deal with himself. 

For the moment, as he smiles and sticks out his tongue, he's responding well enough in his own way.

My mistake / Wonderful life

A few days ago I wrote that, compared to other animals we are born early, and do an unusual amount of developing after birth.  

On reflection, it would have been more accurate to say, "unlike other mammals".  

Animals in general have a lot of weird and wonderful ways of managing the early stages of development -- laying eggs, for instance, and either sitting on them until they hatch, like most birds, or trusting them to their own fates, like frogs do.

But even among mammals, I've realised, we're far from being the only unusual ones:  

The platypus and echidna are mammals, but they lay eggs.  

Marsupials are mammals, but they emerge from the womb in a very rudimentary shape, and migrate to their mothers' pouches, where they spend more time developing than they do in the womb.  

Left: kangaroo at 5 weeks gestation, fastened on his mother's nipple soon after birth.
Right: kangaroo surveying his kingdom at 5 months.

A more appropriate comparison would have been between us and the rest of the placental mammals, including rats, bats, cats, and whales.  

Other placental mammals give birth to little ones who are livelier than we are in the days and weeks after birth, variously scurrying, flying, or swimming around while we're still lying on our backs, like Asa's doing.

So it's in respect to them that the "fourth trimester" idea makes most sense.

Wonderful life

These reflections may seem weird.  

All the work Jed was doing on that dissertation went to his head, some of you may be thinking.  

He has finally lost it completely, others of you may have concluded.

Here's the inspiration for these thoughts: 

Thinking about the stages of development that Asa has been through over the past months -- thinking about Asa in general -- gives me a new sense of the wonder of life.  Not just ours, but all the humming, buzzing diversity of life that animates this planet.  And a new sense of my own kinship with it.

On another level, these thoughts distract me from the sadness of being away from Selam and Asa.  Today, for instance, I found a sponge in the shape of a fish that Selam and Kuri had used to scrub Asa with when he was here.  That gave me a pang of nostalgia. 

But in a few weeks, I'll be with them again.  

Then the blog may become a bit more concrete.  

Or maybe Asa will continue to inspire me to write about how wonderful life is.

Fourth trimester

Since I've been working on my dissertation, I've not been able to write on the blog recently.  But now the dissertation is done, I can pick up Asa's story again.

Asa is 80 days old today: a little under 3 months.  So far he's racked up the following list of accomplishments:

• Feeding.  He's got that down, at least as far as breast milk goes.  
• Crapping.  Also under control. 
• Growing.  He has grown prodigiously, acquiring a second chin and adding rolls of spare fat to his legs.
• Crying.  Thankfully he doesn't do this too much.  But when he's unhappy, he lets us know.
• Smiling!  He started doing this after about 35 days, and does it a lot.  (He has even laughed a little in his sleep.)
• Moving around.  Placed on his stomach, he supports his head and writhes about a good deal.  He doesn't yet get very far.
• Finger-sucking.  Sometimes this happens in the womb, I've heard.  For Asa, it seemed to happen in the course of routine flailing, but recently he brings his hand to his mouth more often than you'd expect by chance -- and then to give it a good suck.  Once Selam reported that he put almost his entire hand inside his mouth.  (Try that for yourself.)
• Vocalizing.  Largely vowel sounds, but some consonants too.  Once I seemed to hear him say "Embi" (an Amharic word which translates roughly as "No way."). 

In addition to these achievements, Asa has gotten a passport, and has been Christened in the Ethiopian Orthodox Church.  (The Christening deserves a post of its own, and I'll report on that soon.)

Asa's passport photo.  Not looking his best.

On April 1, Asa flew to Ethiopia together with his mum and grandmother Kuri.  

Selam has gone back to work with the UN Refugee agency in Addis Ababa, and I'll be joining her and Asa there in a few weeks.

Asa has reportedly adjusted well to Ethiopia.  We're not sure whether he noticed the difference.  In Ethiopia, as in the US, he's been doted on by his mum and grandmother, who cater to his every need.

Back here in the US, I wonder what these first months have felt like to him. When he dreams, for instance -- when he's asleep, and his eyes are darting around and his breath is irregular; when he laughs in his sleep -- what is he seeing?

Some people consider the first 3 months of life as a fourth trimester, a period of rapid development that in other animals happens in utero, but in humans happens after birth.  So in a sense Asa is as yet unfinished (more than us older folks): a compromise between what his mum's pelvis could accommodate in terms of delivery, and where he could get to in terms of viability.

On this basis, we should be generous in appraising what he's able to do so far.  

Bravo, my son!  Keep it up.