Update 2
As sent to the Ewing's Sarcoma On-Line Support Group, Saturday, 3rd October 1998.
Hi to All,
Well its back to the drawing board for us. The Lyposomal Cisplatin didn't do anything at all, so its been discontinued. Matthew has now gone back on Etoposide 3x3 orally. This will be indefinitely. We were offered another treatment but were advised strongly not to do it if we valued Matthew. E-Cyclosporin? Its apparently very toxic and wouldn't make any difference in the end. We were also offered placebo drugs for Matthew which we refused, Matthew isn't ready to give up so why should we for gods sake!
If anyone out there finds or hears of anything as the days/weeks go by let us know, we are still looking for anything that may help him.
Can I just thank both Simon and Mike for their messages of support today, its very comforting knowing you're all out there rooting for us. We would have written properly last night, but yesterday was a long day! It took us three hours to get to the hospital because of traffic problems and we tried an alternative route, well my map reading is not great and it took twice as long to get there as it normally would!
Needless to say neither Robert or myself were in a good mood when we finally got there!! Then one of the nurses made the terrible mistake of assuming I didn't know how to apply EMLA to Matthew forearms and nearly got her own needle shoved where the sun don't shine!! I don't know who was more offended by her stupidity, me or Robert, but Robert did the right thing and bit his tongue before leaving the room in disgust! I sat there and fumed silently!
Anyway, that's our news from yesterday, doesn't time fly when you're having fun!
Love to all of you.
Karen, Robert, Anneka & Matthew.