James Alexander Chacko

Four summers ago,just before we heard he had relapsed, sailing club.

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, July 1, 2009

James would have been 17 today.

I woke early thinking we should be having the usual gathering in bed for presents, with special breakfast to follow, but thought at 17 what would he have wanted? Probably the older ones would be away, jobs or university, there would be a teenage party or clubbing experience to dread later on.

At the weekend we bought flowers for his grave and I felt unusually angry that it was flowers not birthday presents. Usually I just feel sad. On Sunday it was the Helen House memorial service, it's very emotional, they had Anna's reading about 'I have carved you in the palm of my hand' and in the sermon Mark said (among other things) that sad thoughts are like ducks in that they seem to disappear and then suddenly emerge where you don't expect them. Odd simile, but kind of true. So many families there with individual stories of tragedy - people who travelled abroad for last chance hope, from here to America, or from other countries to here. People who never found out exactly what was wrong, people who thought their child was cured ... and seeing them go up to light candles you remember odd details they have told you about their child, about the hospital or home, almost I could cry for them as much as for us.

Anna and Tom came, Rose had to work. That was my fault, I thought I'd told everyone when it was but clearly I hadn't.

I'm going home today, Rose may make a cake, Frank will also try to be early - I have to go to Nottingham later in the evening for a short conference so it's a brief family meeting. We have never really been good at deciding what to do on his birthday. Someone suggested Chinese lanterns that you light and that float away, apparently it's not dangerous at all.

Ben says he's thinking of James a lot, his part of Cobra Game, odd and amusing comments from the strange characters that were his.

Frank says he was thinking about when James was born, he had big hands and feet, he thought maybe he'd take after my family and be tall. We have a video recording of James in the hospital, just born, and Anna aged 3 saying firmly 'it's MY baby'.

Read Journal History

Hospital Information:

John Radcliffe Hospital, Oxford

Links:

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

Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.