|
James Alexander Chacko James and Anna, a team. 2004
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
Friday, June 10, 2011 I am really going to remove this soon - I keep starting but get depressed reading through - and it takes ages - but we want to make a book of the entries when James was alive.
5 years and one month since he died. Still seems very recent, though it also seems ages since we saw him. And his friends are grown up young men.
Read Journal History
Hospital Information: John Radcliffe Hospital, Oxford
Links: http://www.otw.org.uk/ Camp James went to (and loved) http://www.ukccsg.org/index.html UKCCSG (UK children's cancer treatment) http://www.helenanddouglas.org.uk/ Helen House
|
|