Mari
Your on the wrong 'page' on this site ...there are at least 4 others (including me ) who leave messages regularly about our 19 & 20 year old sons & daughters who are battling ES ......I am the mother of the longest 'suffering' or longest 'surviving' which ever way you want to look at it ....my son Ryan has been walking this walk for almost 4 years now ( 4th anniversary 23 March) & he was 20 on 15th October 06, there is Jef's Mum Angie but sadly Jef past on, on 2nd august last year....it was his birthday there on 1st of Feb, he would be 20, so Angie not doing so well, then there's Suzie Mum of Rhandi (might be spelt wrong) she is 19 also & theres' Janet Mum of Jackie who is also 19 ...she is just finished her 9months of chemo radio etc and is currently in remission, her Es is on her ribs (same as Ryan...can't remember where Rhandi's is but think last thing I recall she had now been told it wasn't ES but some other type ....Jef's was on his pelvis then spread to his spine .......go to the other page within this site under sarcoma then ewings it will have a total number of messages showing approx 90...it does say last message left some time ago (can't remember when) but its wrong think that was when the first message was left so it is very much the 'page' we Mums talk to each other on .....there is also Jef's web site dedicated lovingly by Angie ....if you type in Jefology you'll see Jef and read all about him....catch up with the rest of our stories at the other page and you'll now be added to all our prayers....other's are all in different parts of USA ...but me & Ryan we're in Scotland ...I'm going to visit Angie in US next week ...going to cheer her up ....can't wait...hope you and your son get strength from our stories and our battles .....hope he is having less pain! You are quite right to fire the Dr ....this is a battle ....nvever forget that ...I've battled long and hard ....with Drs with surgeons you name it ...I've left the cancer battle to Ryan and he is still fighting ...hope you get this hope it gives you courage and a sense of belonging ...we all know where you are ....we all know your feelings only too well ...catch us at the other page
take care
Karen