Trains

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.

Further update

Last week Asa’s medical exam again yielded an all-clear: No tumour activity; no treatment needed.

That’s the second time in a row.

Yee-ha!

In other news: Asa has now lost two of his baby teeth (and is 40-pence richer).

Asa minus his first deciduous tooth

We are kicking back and listening to some music...*

wearing jazz specs.

* This link takes you to a list of tunes we're listening to at the moment -- on Jed's blog.

Update

At Asa's medical exam last Friday, the doctor told us he'd had a good hard look, and could see no tumour activity in either eye.

In these past four years, it's rare that we've gotten such good news as this.

By way of celebration, we're sharing some drawings and paintings Asa's produced recently.

'The lonely beast'

'Map of the world'

'Fish-eating dinosaur fighting bubble-blowing dinosaur'

Untitled

The artist at work

Asa has another medical exam in six weeks time.

Hopes and fears

We’ve been enjoying a good spell these past 9 months. Asa has continued to have exams under anaesthetic every 3 to 5 weeks, but after most of them we’ve gone home feeling reassured and encouraged. Asa's nearly five now, and for a long time we held out hope that five was a magic number: the age at which the retina stops growing; and for most children with retinoblastoma, the risk of new tumour growth declines to insignificance.

In the first week of the new year, however, the doctors noted an area of new tumour activity in Asa's right eye. They’ve had their eyes on this spot for some time, and since they’d already tried on multiple occasions to treat it with cryo and laser therapy, and since it’s a discrete lesion as opposed to a diffuse area of growth, they opted to use a radioactive plaque.

So yesterday Asa had a radioactive plaque inserted into his eye, for the second time.

The fact that he’s undergoing this treatment again (the first time was back in June) doesn’t mean the last radioactive plaque failed. The plaques the doctors are using are small —only about a centimeter (11.6 mm) in diameter — and they treat a small portion of the eye. 

In fact, the tumour that was treated last time has responded well to the treatment, and the new plaque is being used to treat a different part of the eye. 

It’s an advantage of this treatment that it can target a particular spot so well: Radiation is dangerous, and ideally you don't want it touching anything that doesn't really need it.

Sign that was hung on the door of our room at Birmingham Children's Hospital back in June, 2015.

Although for about 24 hours Asa is being cooped up in a room with an 'ISOLATION' sign on the door, the radiation doesn’t actually penetrate more than a few centimeters beyond the surface of the plaque itself. Any effect on those around him (doctors, nurses, and us) is quite negligible.  

How does Asa feel about all of this?

When we broke it to him that he’d be having a radioactive plaque again, Asa's response was, “That’s good! I can go to that playground.” 

He was remembering a playground on the grounds of Birmingham Children’s Hospital – in a part of the complex that we haven’t visited since the last time he had a plaque.

For us too, memories of the last treatment are largely positive. We were put up in the hospital's Teenage Cancer Trust ward, where there were lots of distractions: a pool table, an electric keyboard, and so on.

We’d hoped those good memories would colour this round of treatment for him. But he's changing so fast, it’s difficult to predict.

This past Christmas, for example, was a very different experience from the previous year – much more exciting for him, because he had a grasp of what was going on (and especially of the magic and mythology of what was going on).

Since that last round of treatment, he’s also started school, and he's much more socially adept than he was nine months ago.

Our fear, I suppose, is that his increasing grasp of what’s going on in the world will lead to more anxiety about going to hospital; about the whole business of having cancer, and being visually impaired.

For the time being, though, he continues to put up with hospitalization, anaesthetics, soreness, and compromised vision with amazing good humour.

 

Doodling to pass the time. The plaque was left in his eye for about 20 hours.

His fears seem to be of the more ordinary sort for children of his age – of things like bears, crocodiles, and dinosaurs.

Signs on Asa's bedroom door. Bears and crocodiles prohibited.

(Recently, after a seeing a TV news story on violence in Mexico, he’s added “drug lords” to his list of bogeys.)

Next week he’ll be five years old.

Radioactive plaque

It crossed my mind some time ago to write a blog post called ‘Ten good things about having a child with eye cancer.’ Ten silver linings of an undeniably dark cloud. I’m not actually sure I could get to ten, but one of the things that would be up there is how much of Asa’s childhood we've had the opportunity to see (more than most parents, whose children can be safely packed away to a childminder or nursery while parents get on with making a living). Another would be the awareness that the fight against the disease has given us of the gifts of life and sight, which many people can take for granted.

The downsides are all too clear, of course. The misery of having poisons infused into your child’s bloodstream; the fear we felt, during chemo, of some infection snatching Asa’s life away; the repeated exams under general anaesthetic (more than 45 so far, since diagnosis); the sore, red eyes after exams, and the rigmarole of coaxing him to let us put stinging drops in them to control the swelling. The struggle to find the right words to explain to him, as he grows in awareness, why it is we submit him to these things. And the challenge of relating what we’re going through to others, who don’t know this disease (Why should they?) -- and why it is that, after more than 3 years of treatment, we still can’t give a simple answer to the question, “What's the prognosis?”

Asa at 4 months (approx 6 months before diagnosis), and today

A friend remarked recently that given all we’ve been through, we must have built up a certain toughness. Indeed we have; but there are still some areas of vulnerability. Sometimes small things can knock us sideways, like the difference between a four-week and five-week interval between EUAs. Usually the interval has been three or four weeks, and while you might think a longer interval would be better (More time away from hospital!), the extra week can feel like a long time, and your mind turns to wondering whether the tumours might be growing out of control as the clock ticks.

Another thing that tests us is coming to terms with new kinds of treatment. On the principle of “better the devil you know”, we come to feel comfortable with treatments Asa’s received in the past (particularly cryo and laser therapy, which he’s had lots of), and we get anxious about new ones. But when a relapse occurs that can't be treated effectively with methods that the doctors have used in the past, it’s inevitable that we have to consider new options.

Asa receiving an award from the Childhood Eye Cancer Trust, in recognition of his bravery. Hackney Farm, March 2015.

 

Last month Asa had a relapse in a part of his eye that's dangerously close to the ciliary body -- a structure that can serve as a conduit for tumour cells to travel outside the eye. Left unchecked, this could lead to the cancer colonising new parts of the body, and becoming a threat not just to his sight but to his life.

Radiotherapy

 

The treatment that the doctors have recommended on this occasion is radioactive plaque -- a piece of radioactive material inserted into the eye (stitched onto the surface of the eyeball) and left there for about a day and a half, to do its work. This approach was suggested to us a few months ago, as something that might be necessary if certain areas of activity didn’t respond to cryo. But only recently did the doctors make a forceful case for doing it now.

For almost as long as we've known about radiotherapy as a treatment for eye cancer, we've been scared of it. Back in 2013, a recommendation that Asa undergo external beam radiotherapy (EBRT) prompted us to look at the medical literature on this treatment, its rates of success and complications. What did we find? EBRT can be said quite unequivocally to be effective in treating tumours in the eye. But it’s also associated with increased risks of later life cancers -- particularly sarcomas in areas of the body that are exposed to collateral damage from the radiation beam, such as the bridge of the nose, or parts of the eye socket. These “secondary cancers” are very difficult to treat, and can be fatal. Which puts EBRT in the category of treatments that can cure the disease but risk killing the patient in the process (or at least reducing lifespan considerably).

Radioactive plaque definitely does not belong in this category. The radioactive substance that’s been recommended for Asa (ruthenium isotope 106) has a very sharp tail-off, and shouldn’t penetrate beyond a few millimeters into the eye. The radioactive material is enclosed in a metal case (thicker on one side than the other, so as to shield neighbouring structures), and is applied flush with the area of the eye that needs treating. All this serves to minimize exposure of surrounding tissue to radiation.

 

We've come around, in the last few weeks, to accepting that this is the best treatment available. But it’s still stressful. We ruminate on whether the treatment will work. Will the tumours in the right eye finally stop growing? Will there be side effects beyond the inevitable swelling and soreness? In September, when Asa starts primary school, will he still have the vision he has now? We can’t know the answers to these questions. We just have to wait and see, and hope and pray. 

This much we do know. Tomorrow morning Asa will go into the operating theatre at Birmingham Children's Hospital. He’ll sit on my lap or his mum’s to receive the anaesthetic gas through a face-mask, and we’ll tell him a bedtime story as he drifts off. We’ll likely be reunited with him around noon, by which time he’ll have had the plaque inserted, and from then on he’ll be confined to a side-room for the rest of the day and night, and for most of the following day, until they take the plaque out again in the evening. In the interim, we have to make the best we can of the time. Fill it with as much humour and distraction -- and joy, and love -- as we can.

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:

https://africanbushtrek2014.everydayhero.com/uk/life-and-sight-for-ethiopia

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 you possibly can.”

Asa with patch and spectacles

That was about as complete a discussion as we’ve had with him about this topic. We’d been prepared for it, in part, by advice from the play therapists at Birmingham Children’s Hospital, and a children’s book that they put together, which we’ve been reading at bedtime.

from 'When I come to Birmingham Children's Hospital'

But Asa’s questions went far beyond the content of the book, and drew on conversations that he’s overheard us having with doctors, and among ourselves.

He clearly understands more of what’s been going on around him than we’d assumed.  And now, at three-and-a-half, he’s getting articulate enough to feed some of it back to us.

Soon he’ll doubtless have other questions: Why are the tumours there? and When will they stop growing?

How should we respond to questions like these, when nobody knows the answers? 

The point at issue

Two months ago, one of Asa’s routine exams showed that the tumours in his right eye had relapsed. After a couple of blissful months when the tumours were relatively quiescent and the interval between check-ups had lengthened to four weeks, we went back to a schedule of three-weekly examinations.

At each of the subsequent exams, there have been signs of continuing tumour activity. 

Tomorrow we travel to Birmingham once again, ahead of an examination under anaesthetic on Friday morning.

We pray for good news. And for guidance in answering Asa’s questions as best we can.