James Alexander Chacko

School uniform and the logo - I know the picture is sloping and fuzzy but it's typical - chatting over a cup of tea after school - and it's from November 05 when things were pretty hopeless, trying a last ditch chemo that we knew had little chance.

James had a supratentorial PNET brain tumour with a glial component. He has had two brain surgeries, chemotherapy and radiotherapy since February 2004. (Brief history in the first journal entry)
Almost a year after the end of treatment the tumour grew back. He had one cycle of temozolomide alone, a scan showed growth, then two cycles of temozolomide and etoposide, a scan showed growth, then temozolomide with irinotecan (CPT-11) with the hope of stabilising or shrinking the tumour. The plan was to do this for two months then scan. After 5 weeks his symptoms got worse, so they scanned early and it had grown a lot (maybe 50 per cent bigger in 5 weeks?) We don't know whether we will try anything else, advice so far is against it. If he is well enough when it opens, he may go into a phase 1 clinical trial of Tarceva but his doctors think it is unlikely he'd be well enough. (Trial delayed until around April - and delayed again ....)

His doctors feel that it is behaving more like a glioblastoma than a PNET, there was always a doubt about the exact type of tumour. At this stage knowing exactly what it is will not help much as both are grade 4, the most malignant, and neither has a good treatment option on recurrence. We have looked into various newer treatments but nothing seems to be possible. James is on palliative care only at the moment, apart from a homeopathic treatment that his doctors agree can do no harm.

James died peacefully at home, in his sleep, on Tuesday May 9th 2006 at 2.30 am. The whole family was with him.


James' Requiem Mass was held on Wednesday 17th May at St Gregory's Church, 10 St James Square,Cheltenham

Journal

Wednesday, September 10, 2008

James's school sent us the logo they mean to use for his memorial fund, I think he would have liked it. I'm adding it to the picture above. (The picture isn't part of it, I know its a terrible picture, after school with a cup of tea. November 2005.)

Frank, Anna, Teresa and me went to see Vanessa Redgrave in Joan Didion's 'A Year of Magical Thinking' which is reflections on how the author coped with the death of her husband and the serious illness and eventual death of her daughter. It was an intense play, and I thought a lot of the feelings were familiar - the feeling that you had to do your part exactly right, to avoid disaster, the hearing only part of what you were told ('The word I took away from that discussion was FIXED'), the inability to believe it was really true that they were gone. Anna also said a lot of it reminded her of how she has been thinking herself. I wondered, considering what the author said about cargo cults and magical thinking, whether my determination to understand all the medical and treatment details when James was ill might have been partly an attempt to gain the magic and power of a doctor by appropriating their knowledge ... that if I read up on it and understood it I could control it, ensure a good outcome .... faced, like someone in a a primitive society, with areas of knowledge - and emotion - that were totally unfamiliar. Frank didn't like the end, where it says 'no-one is watching the sparrow', he felt that's not such a great insight. He said bits of it reminded him of me, I said, was I bonkers? he said 'a bit'.

Our best apple tree blew over in the wind, I think all the rain made the ground too soggy. It's roots are still mostly in mud so I hope it may live, though it is all over the grass and not tidy. Maybe us letting clematis grow all over it didn't help.

Ben is off to China again, this time to a sub tropical area. We set off for Heathrow Airport in 10 minutes. Rose is enjoying being in the Middle East, she says people are really friendly and someone is teaching her some Arab music.

I passed - they copied me in on the email they sent to Oxford, saying probably with distinction but not definite until the external examiner checks everything, but definitely passed, so I can stop worrying. Oxford has responded by sending me statements of fees and tricky questions from the college doctor. I am now officially a Master of Bioimaging which I don't really feel like - it was a brilliant course though and I learned a lot. I think possibly the part I am still most impressed by is the electron microscopy, though in fact I did worst at that - but I know how to prepare a specimen I can hardly see, wash it in single drops of water, load it in with extreme care under the fierce gaze of the lab manager who is convinced I will break something - and suddenly what was almost invisible on the specimen holder is a huge map of tiny structures, inside cells. OK, I wasn't too good at it, very fiddly preparation, anyone who's seen me chop onions would know that microscopically thin slices would be a challenge ... but still. Live cell imaging is also fascinating and I am much better at that.

Read Journal History

Hospital Information:

John Radcliffe Hospital, Oxford

Links:

E-mail Author: sarahchacko@blueyonder.co.uk

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