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Relapse. Birthday.

Wednesday's  Examination Under Anaesthetic yielded some unexpected news. 

In Asa's left eye, which had been stable since the end of primary chemo in June, there were 4 or 5 new tumours, and one previously treated tumour that was growing slowly. There were also some new seeds.

In his right eye, moreover, the tumours that had earlier responded well to Melphalan had started to relapse.

These areas are at the front of the eye -- as the doctor put it, "almost where the retina finishes."

And the seeds that were there last time had not responded to the cryotherapy.

Asa looks out the window of the Royal London Hospital, before his EUA.

Treatment options

When Selam picked Asa up from the recovery room, both of his eyes were red and swollen from cryotherapy.

Cryo is a stop-gap measure: Since too much of it can cause retinal detachment, this approach doesn't hold much promise for controlling the tumour growth in the long term.

The area of tumour activity is also too wide for the more gentle kinds of radiotherapy -- such as radiation delivered through a "plaque" inserted into the eye, or so-called lens-sparing radiotherapy.

The treatment options therefore boil down to second-line systemic chemo, or whole-eye radiotherapy.

The decision is difficult.

Second-line chemo involves drugs that are more toxic than the ones Asa received during the first half of 2012.

The drugs are doxorubicin and topotecan.

We've not been able to find out much about their effects in retinoblastoma.

This is because it's rare that they're needed for Rb. Usually the first-line regimen -- in combination with other treatments such as laser and cryotherapy -- is enough to control this cancer.

In the US, our doctors tell us, topotecan has been used intra-arterially (directly to the eye) with some success. This hasn't yet been done in the UK.

More commonly -- on both sides of the Atlantic -- the topotecan and doxorubicin combination is used for neuroblastoma, a cancer that affects the nervous system.

Because the prognosis for neuroblastoma itself is worse than for retinoblastoma, it's difficult to gauge precisely the chances of success in Asa's case.

But the doctors tell us that these drugs are very effective against neuroblastoma, and in the few cases they've seen that merited it, against Rb too.

Side effects

We do know that the side-effects of these drugs can be severe.

Doxorubicin can lead to mouth sores when blood counts are low, and -- if dosage is too high -- cardiac fibrosis (stiffening of the heart muscles), which can be fatal if it's not checked.

Topotecan's side effects include diarrhoea.

And this is on top of the immunosuppression, nausea, malaise, and hair-loss that chemo drugs generally cause.

Going with chemo

Despite all this we've come down on the side of chemo.

Whole-eye radiotherapy, while less traumatic in the short term, would lead to scarring and long-term damage to the tear glands, which can be debilitating in later life.

We can't commit Asa to that, when there's a chance that chemo might produce equivalent results without lasting damage.

The new schedule

Asa will be given the drugs every 3 weeks, over the course of a week each time, with EUAs every 2 cycles.

There may be between 4 and 6 cycles in all.

We'll be spending a lot of time in Great Ormond Street over the next few months. 

And probably a fair amount of time in our local primary care centre -- King's College Hospital -- when Asa picks up opportunistic infections.

A change of lifestyle

On Friday Selam took Asa to a singalong session at the local library, and Soft Play at the Peckham Leisure Centre -- a sort of padded playground, with slides and ladders and a sea of plastic balls.

These are some of the things he's taken pleasure in over the past months.

These activities take on new value as we realise he'll likely have to withdraw from them when the chemo begins.

Only within the past month has Asa started to establish friendships with other children -- notably Angel, the daughter of our neighbours Luke and Sophie, who's just a couple of months older than he is.

Asa and Angel

Hopefully Asa and Angel will continue to play together. But it will be a while before Asa returns to the daycare centre he's been attending.

Asa's birthday

Today Asa is 2 years old. Yesterday (Sunday), friends gathered with us to celebrate his birthday.

Selam coaches Asa in blowing out his candle.

Asa paid little mind to the toys he was given, but enjoyed the attention and the sweet things to eat.

"Happy Birthday, dear Asa." Vanita and Deia, and Millie and Nathan applaud.

Selam and I enjoyed it all. And it gave us a chance to explain to some of the friends we're closest to here in London what we're expecting as Asa begins the new course of chemo.

By the time he gets his first dose of the new drugs, I will be in Ethiopia on a work trip. So we're relying on friends and relatives to help out in the meantime.

It will be hard for all of us to be apart at this time. But we're determined to go on with our lives as close to normally as we can, while doing our best to keep Asa healthy.

World Cancer Day

By coincidence, February 4 is also World Cancer Day.

Check out the website, and consider the messages of the organisers on common myths about cancer.
Cancer is not a death sentence; it's not a matter of fate; it's not a disease of the wealthy, elderly, or developed countries; and it's not just a health issue.


  1. sending strength and love over the ocean

  2. Every blessing and good wish for you and Asa and Selam... So sad that you have to go through this, and so grateful that you have such good care, good strength, and good friends to call upon. Keep us posted as much as you can, and safe travels!

  3. I'm so sorry that you got bad news, but as always, I admire the analytical and sensitive way you approach his treatment. I hope you get good results. Happy belated birthday to this very strong and special boy!


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