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Showing posts from July, 2013


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…