Lessons from a strange year

It was one year ago today that we got Asa's diagnosis.

Looking back, we marvel at how quickly things have gone.

We left Ethiopia on the 9th of January, four days after the fateful visit to the ophthalmologist.

Asa saw our GP the day we arrived in the UK, and began treatment the following week.

 

He turned one during the first round of systemic chemotherapy.

A year into this journey, we'd like to share some lessons.

1.  Be thankful for what you've got.

That's lesson 1.

Although retinoblastoma has become a big part of Asa's story -- the eye exams and treatment regime setting much of the tempo of our lives these days -- to us he's still much more than an Rb case. 

In every other way -- curiosity, playfulness, sociability -- he's a normal kid. A wonderful kid. With as good a shot at life as any other.

trying on Daddy's shoes

And yet if it weren't for the support we receive from the medical system here in the UK we wouldn't be able to say that.

His life would be in danger.

So let us acknowledge again our gratitude to the NHS, and the many doctors, nurses, and support staff who make it such a great institution.

2. Be ready for curve balls.

Lesson 2 is "Expect the unexpected". 

For example, the low potassium levels that Asa suffered during systemic chemo -- requiring bottle after bottle of supplements -- were a surprise to everyone.

It's not a normal side-effect of chemo.

And the anatomy of the arteries supplying his eyes is abnormal (as it is for many of us -- we just don't have reason to check).

We only found out about that when he began intra-arterial chemo in September. 

More generally, we've learned this past year that things that you think would be tough may be easy. And things that you think would be easy may be tough.

Fear not the Hickman line, NG tube, neutropenia, or transfusion!

All of these things were scary at first. Very soon they became entirely innocuous to us.
 

Halloween party at Great Ormond Street, 2012

But when you've gotten used to crisis mode, a greater challenge may be dealing with normal life.

Worry, anxiety, and depression tended to descend on us during "peace time" more than during times of crisis.

Which makes lesson 3 particularly important….

 

3. Look for silver linings.

Chemo was hard, but also a blessed time in many ways.

Selam gave up her job in Addis Ababa to care for Asa full-time. And thanks to my employer, I was able to work from home.

So we were all together for 6 months -- locked down indoors at first, but then, after the chemo finished, with greater freedom. 

Frontispiece from "How We Work," a book Asa enjoys

On account of this, we witnessed more of Asa's development first-hand than we would have done had our lives continued as before.

That's a great gift, because he's not going to be one year old again.

Another blessing has been the relationships we've strengthened this past year.

Dozens of friends sent us photos bearing good wishes for Asa. 

We've received many warm messages.

And we've also forged new friendships -- with people we've met at hospitals, at the Childhood Eye Cancer Trust family weekend, and online.

Next month we hope to make further contact with families in Ethiopia whose children have Rb, and the doctors involved in their treatment.

 

4. Hope and pray for the best.

2013 is going to be a crucial year. The period of greatest risk for tumour growth is from birth to 3 years; after that the risk of relapse decreases.

It decreases even more dramatically after age 5. But we must take one year at a time.

If we can get Asa through to 2014 with the cancer in check, there's a good chance he'll keep his eyes.

Last Wednesday, an exam showed flattening of the tumours in his right eye as a result of the IAM.

But there were also three new seeds in that eye that needed cryo treatment.

The next EUA will be on January 30.

We remain grateful for the support, advice, and treatment we're getting, knowing it's among the best available in the world.

And we hope and pray for the best.

Happy new year!