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.
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| 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.
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| 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.
