Rb in Ethiopia / Cycle 4

Chemo cycle 4 has been hard, as Asa struggled to tolerate a raised dosage of one of the chemo drugs, and was hospitalized for four days over Easter.  I was in Ethiopia during much of this.

At the beginning, Asa was relatively happy in the daytime, but during the nights he was clearly uncomfortable. Paracetamol did nothing to relieve his discomfort, and Codeine worked only for brief periods.  Saddest of all to see, he wanted desperately to breastfeed, but as soon as Selam’s nipple was in his mouth, he would be overcome with nausea and retch or vomit. 

The dosage of Vincristine had been raised from 50% to 75%, and it’s an indication of how powerful this drug is that an additional 0.19 mg. should make such a massive difference in terms of side effects.  Our experience with the lower dosage had made us feel pretty confident about chemotherapy – “We can handle this!” – but this cycle put us back on the defensive again.

That was the state of play when I left for Ethiopia on the Sunday before Easter. 

It was a great relief to hear, after I arrived, that Asa had stopped vomiting and was breastfeeding again. 

Housekeeping

One of the jobs I had to do in Ethiopia was to gather things from the apartment in Addis Ababa that we’d left in January.

Since we left, Selam’s aunt Birritu had moved our stuff to another apartment, and when I got there I was surprised to find that she’d arranged the new apartment exactly like the old one – everything down to the fridge magnets and the books on the shelves was in its place.

A note on the fridge.

It was moving to be surrounded by those things again, and it reminded me of how incredibly easy life had been for us – even if we hadn’t fully appreciated it – before Asa’s diagnosis.

Rb in Ethiopia

Another job was to see Dr Abonesh, the ophthalmologist who’d first confirmed Selam’s suspicion of Retinoblastoma, and to learn more from her about Rb in Ethiopia.

I met Dr Abonesh at the private practice where she works, and we chatted for a half hour as several patients waited outside her door.

Dr Abonesh estimated that she’d seen 10 cases of Rb per year during the 8 years that she worked at Menelik II Hospital, the country’s main referral centre for eye problems.  The children came from all over the country, she said.  Most arrived with proptosis (protruding eyes), and when parents were told that the eyes should be removed, they would often disappear in denial, sometimes coming back when there was a protruding mass that needed to be cut out, but more often not returning at all.

Dr Abonesh knew of only two success stories – children who’d been diagnosed relatively early, and who’d traveled to Kenya for surgery.  Both had had their eyes removed, but were doing well since. 

So the short answer to our question, “What would have happened to Asa if he’d been in Ethiopia?” is that he too would have had his eyes removed.

When I told Dr Abonesh that we were interested in helping children diagnosed with Rb in Ethiopia, she suggested something we hadn’t thought of before. 

In the UK, there are several organizations that provide accommodation and transport services for families whose children need urgent medical treatment – the Sick Children’s Trust, which accommodates families from out of town whose children are receiving treatment in London; and CLIC Sargent and a government benefit scheme, which help with transport costs.  But in Ethiopia, where the challenges for families are so much greater, we don’t know of any equivalent. 

Contributing to a transport fund for families who need to travel to Addis Ababa for treatment would be one way to make their burden lighter. 

Of course transport and accommodation aren’t the only things that are needed.  Raising awareness among regional medical personnel and improving doctor-patient communication would be helpful too.  Not to mention making available the drugs that Asa’s receiving. 

But transport is at least an area where one could make a difference with a small investment. 

The day after I met with Dr Abonesh, I took a bus to Jimma in southwest Ethiopia, where I’d done my PhD research.  The cost of the ticket from Addis to Jimma is 100 Birr (about $6) – Not much to us, but a considerable sum to many Ethiopians.

Addis Ababa central bus station at dawn

Asa’s trials

While I was in Jimma, Asa came down with a fever and was admitted to hospital in Colchester.  He was placed on antibiotics, and over the following 3 days he had transfusions of red blood cells and platelets when his counts dipped below the danger thresholds.

He’d been admitted on Good Friday, and when I arrived home on Easter Monday he was close to being discharged.

He’d eaten almost nothing during the entirety of my time away, surviving on cow’s milk delivered through his NG tube and breastmilk, and an occasional slice of orange or spoonful of vitamin syrup.

His hair, which had thinned out somewhat in previous cycles of chemo, was reduced to a sort of tennis ball fuzz, and his eyebrows had almost disappeared.

Staying positive

The good energy we’ve received from family and friends has helped us stay strong as Asa goes through all this.

Last month some dozens of friends sent us photos of themselves bearing good wishes for Asa (see here!). 

To them we send the following message:

As we reach the last days of cycle 4, Asa’s appetite is starting to revive.  On Wednesday he ate a full meal (his granddad’s chicken and veg) for the first time in more than 10 days, and since then he’s accepted small amounts of food by mouth.  This morning, with much cajoling and patience on his mum’s part, he finished his breakfast.

But even when he’s not eating, Asa’s liveliness is extraordinary.  Despite all the poisons in his bloodstream, and the negligible nutrition he gets, he somehow mobilizes great energy for exploration and play. 

As we sit on our bed, writing this, he is crawling all over us and biting random parts of our bodies.

Much love from us and our balding but lively 14-month-old to you all.