Rebirth

Six years ago, I wrote the first post on this blog, in anticipation of the arrival of our son, Asa.

In addition to the excitement of impending fatherhood, I was inspired by two members of my family who’d blogged.

Seth, a cousin, had written a blog about his son Tofu. When Seth died midway through Tofu’s second year of life, the blog became a sort of message in a bottle, a testament of his love for his child. 

The other inspiration was my aunt Anne. Her blog helped her friends and family – spread quite widely across the world – stay informed about her battle with cancer.

This month we welcomed into our family a baby girl, whom we’ve named after Anne.

Anne (nickname Ayya) at 3 weeks old, on Christmas Day

At birth baby Anne weighed in at just over 3 kilos (6 lb, 7 oz). She's a small package. But she changes the balance of our family, shifts the fulcrum. From being two adults and a child (adults holding the majority), we now have equal representation from children.

Asa and I, as males, are preparing ourselves for the impacts of a second female in the house.

Resolution

She also represents a challenge for this blog, which began as a vehicle for my wonder at Asa’s presence in the world. The blog then morphed into a kind of cancer diary; and hasn’t known quite what to do with itself since.

I’m way overdue, for example, in relating the transition we’ve made from the days when Asa was in hospital every 3 weeks, and getting treated every time … to the current regime of 2-monthly exams, the purpose of which is mainly to check we’re still in remission. It’s a very different place.

Maybe it would have been a challenge to keep the blog going anyhow. As children move from toddlerhood to school age ... life gets complicated. At least it did for us. 

Then again, we've only ever done this once.

But -- Anne, here I'm talking to you -- we feel you've arrived at a good time. Asa and the rest of us are ready to do our kindred duties.

As part of mine (I must admit the more practical matters rest largely on Selam’s shoulders) I want to enlarge and revive this blog.

Just as you are enlarging our family, and giving us new life.

Happy new year / Melkam addis amet

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.