Update 1
(as sent to the Ewing's Sarcoma on-line support group)
Tuesday, 29th September 1998.
Hello to All,
Well, got the results of Matthew's CT today, not good news, the primary tumour has once again increased in size. They didn't do the scan from top to toe like we thought they would, so the likelihood of the secondaries having grown is a real possibility too. The Oncologist from the first hospital he had treatment in here in UK phoned to tell us the news this evening. (We apparently still have a shared care system with them and the Marsden).
The final decision as to whether or not he will carry on with the clinical trial will be taken on Thursday, in consultation with us of course. We have been advised though that his best option may be to carry on with the high dose Etoposide like he was before. There is another very intensive treatment available, but there are risks involved and no guarantee's. We'll have to see what is said on Thursday. We haven't told Matthew yet, but I think he knows anyway, he answered the call from the Dr in the first place.
Are we getting to the point now where we should be saying enough is enough? I don't know, the Drs seem to think that it is all Matthew's choice what to do, but don't we as his parents have a choice to make too? Should we allow him to stop all treatment if he wants to? He's only 11 years old, can an 11 yr old make an informed and right choice on something like this? We don't want to play God and put him through more misery and pain, but we don't want to lose him either. Christ I hate this disease!!!
The Essiac has clearly failed so we are going to stop it. He's been on it since the beginning of July, during which time he also had the Etoposide, which, we think must have been the main reason it slowed down the growth rate.
Anyway got to go, got to put him to bed. He says goodnight to all of you.
Karen.