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Showing posts from 2013

5 pieces of advice on how (not) to talk about cancer

How we talk about illness can profoundly influence our experience of it.
Last week we picked up in a hospital waiting room a pamphlet called “Lost for words.”
It’s a practical and clearly written guide on “how to talk to someone with cancer.”
We wish we’d come across it earlier.
As parents of a child who has cancer, Selam and I often talk for him (Mercifully, Asa doesn’t yet understand his condition) and others talk to us as his supporters and carers.
Some misunderstandings that recur in our conversations are well addressed in the pamphlet.

In lieu of sending it to everyone we know, we’ve taken from the pamphlet five lessons that seem important -- expressed here in our own words.
(Following the format of the guide, we write about how to talk to “a friend with cancer”; but the advice applies equally for those caring for someone with cancer.)
Don’t worry too much about exactly what to say

Another lesson

Since the last blog post, I've been to Ethiopia, we walked across London to raise awareness of eye cancer, and we moved house.
Things have been kind of busy.
But really the biggest news is that the treatment Asa's been receiving -- a combination of chemotherapy (using a single drug, Carboplatin) and aggressive cryotherapy -- seems to be working.
He has had two exams under anaesthetic in Birmingham since the treatment began, and the results have been more positive than we felt beforehand we could hope for.

The tumour load in the right eye has decreased to less than 10% of what it was before the start of this treatment.
In the doctor's words: “We're not there yet, but we're definitely headed in the right direction.”
In addition, Asa had a cataract operation at the end of September.
That went smoothly, and with the cataract out of the way it’s possible to show that there was very little new growth of the tumours in his left eye during the time that they’d been hidden from …

Blind for a day

My mum likes to say that we learn about our bodies the way we learn about cars -- each time something goes wrong, you get acquainted with a new branch of mechanics.

As various treatments have been tried out on Asa, we've learned more and more about cancer and the eye.

The graph below summarises the treatments Asa's received these past 18 months.

Situations where retinoblastoma fails to respond to both primary and secondarychemo are rare, and even at one of the world's specialist treatment centres, a doctor might see such a case only once every few years.

 Support research on eye cancer here.
Right now we're in a place, therefore, where epidemiology and large trials have ceased to help much, and clinical judgment becomes very important.

As Dr Jenkinson -- the oncologist we met with in Birmingham -- said, "We're beyond the situation where there's a firm evidence base."

What's required then is very close attention to the details of the disease as it'…

New hope

In the past week, Selam and I sought advice from every channel open to us on what might be done to save Asa's sight and minimise collateral damage from treatment.

We made phone-calls and wrote emails; we read scientific papers about the long-term impacts of radiotherapy; and on Sunday we went to our local Quaker meeting and asked for guidance on how to proceed.

To recap, Asa's predicament is as follows: He has had a relapse in his right eye, and a cataract has deprived him of sight in his left eye.

The choice we'd been offered was between radiation therapy, with the corollary of increased risk of other cancers in adulthood, or removing both eyes.

But the emailing and phone-calling paid off.

The experts we'd consulted -- in the USA, Canada, and Switzerland -- didn't feel that radiation was necessary, and on that basis the London team recommended a full review in Birmingham.

Asa was examined at Birmingham Children's Hospital -- the UK's other dedicated Rb c…


We had an important meeting with Asa's clinical team today in London.

The conclusion:

Both radiotherapy and enucleation are off the agenda -- at least for the short term.

We're to travel to Birmingham for a second opinion within the next 2 weeks, but it looks like more chemo and laser/cryo are on the cards.

We'll soon provide a fuller update. 

In the meantime, Hallelujah.

A hard decision

This week's EUA didn't turn out the way we'd hoped. 
"The right eye has relapsed," the doctors told us after they examined Asa.
"Areas we've treated many times with cryo and with chemo, … last time they looked stable and avascular. 
Today they're growing.
More cryo is not the answer. We've done a lot of it, and it's not controlling things.
Second-line chemo held things at bay, but also in the longer term is not working.
I'm afraid we are recommending radiotherapy.
We don't have another option."
In the past months we've thought about radiotherapy -- it was clear that it would be on the cards if another relapse occurred -- and we tried to prepare ourselves psychologically.
Last week I spoke with a friend who received radiotherapy for Rb as a child, and asked her how she felt about the treatment -- its effectiveness in attacking her tumours, versus the side effects.
When she'd been treated, radiotherapy was the only treat…


Yesterday I wrote to our doctor to ask what the neuro specialists had said at the Multi-Disciplinary Meeting, on viewing Asa's MRI scans.

Did the meeting throw up any new information on what might be behind the head pain? 

And what was the implication of the gliosis that had showed up in the MRI?

The doctor's reply:
No - the scan was not thought to show any cause for his head pain – the area of gliosis is very small and non-specific and is probably related to minor trauma ?during delivery and is definitely not the cause of his pain.
One of the nurse practitioners wondered if the pain could be a manifestation of migraine which is sometime seen in 2-3 year olds.  However, we will check the IO [intra-ocular] pressure in the left eye at his EUA to rule out glaucoma first.
We're greatly reassured by this.

The question of what's causing Asa's head pain remains, but we're steadily eliminating some of the scarier possibilities. 

The next EUA is on Wednesday, 17…


We don't like to add unnecessarily to the sum of anxiety in the world.

So it's with both humility and gratitude that we confess our fears about brain tumours were unfounded.

I quote here from the email we received from our doctor on Friday night, summarising the scan results:

From the report and my untutored eye there is nothing on the scan to account for Isaac’s symptoms [i.e. head pain] – the report mentions a small area of scarring (gliosis) on the right side  but I am sure that this is not causing any pain - I will discuss the scans at the neuro-oncology MDT [multi-disciplinary team meeting] on Tuesday and get back to you if anyone has any further thoughts on the problem.
It's worth noting that although the doctor describes herself as "untutored" in interpreting MRI's, she does in fact have 30 years of experience in treating retinoblastoma. (She is a self-effacing but extremely competent consultant.)

Although not a specialist in neurooncology, she would s…

Asa's third summer

We ended with a cliffhanger last time, describing 3 possible outcomes of Asa's last EUA.

As it was, the results of the EUA were much better than we'd feared, but not quite as good as we'd hoped.

The tumours in Asa's eyes appear to be stable.

They didn't shrink much as a result of the second-line chemo, but nor did they grow.

That puts the results somewhere between options 1 and 2 in terms of the scenarios we'd anticipated -- No dramatic response to chemo, but no new treatment required, at least for the moment.

Looking for signs

One encouraging point is that the ophthalmologist who examined Asa under anaesthetic didn't see any blood vessels inside the tumours -- blood supply being one of the things that would keep them growing.

So it's possible that despite the lack of shrinkage, they may have had the life taken out of them.

The cataract

The cataract in Asa's left eye, however, has definitely gotten worse.

This may be a result of retinal detachment, wh…

Speaking and seeing

This week I got back to London after two months in Congo.

During the first weeks away I was able to talk with Selam by phone; after that we communicated mostly by text message. 

Asa didn't do all that well on the phone (when we'd talk, he'd often just laugh), but on my return I've discovered that he's made amazing progress in speaking.

His vocabulary reflects common preoccupations of children with animals (dog, cat, bunny, bear, and ait [Amharic for rat]) and vehicles (car, truck, plane, tractor, bus, and train). These things recur in his picture books and in toys; some of them he can also see through our front-room window, or on walks around the neighbourhood.

Other words reflect experiences that are less common in childhood.

"Chemo", for instance, Asa uses to refer to a drip set. (He used the word when he last had a blood transfusion.)

And “ambulance” means something different to him than to many kids, because he’s used to riding to hospital …