CancerCompass message board discussion started by Nicolasayssomething on 2/11/2008 http://www.cancercompass.com/message-board/message/all,20821,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ HiMy 10 year old son now 11 was diagnosed with Ewings Sarcoma on the sacrum (bottom of spine) and overlapping onto the central nervous system. Because it is rare there is no data/info for this area so they throw the area "Sacrum" into the pelvic region data/info catergory....which does not have a good survival rate..Tyler went from having a ache in his leg to not being able to walk over a 8 week period. He was wheel chair bound and by the time it was finally diagnosed after seeing 8 seperate doctors and specialist they finally figured it out with a simple MRI.As you are all aware the disease is a lifestyle in itself a world different to what we know. Survival is a daily key word, decisions are life and death and impacting, the thought of simply doing the shopping is alien.Tyler's 50cent mass has significantly reduced and he is now walking and has completed 8 cycles and is nearly finished radiation. There is no more throwing up or accidents, depression or fatigue. Last week he started back at school for a couple of hours per day before radiation appointments... A day I thought I would never see 5 months ago.There are 4 other kids going through the same course he is with Ewings all four found themselves in the same room one week. It was helpful and somehow supportive knowing other children were surviving the same disease.But if I had to sum up my experience so far in seven words, I could only say "a gut wrenching rollercoaster ride from hell".My thoughts and loving energies go out to you all. And I am sorry you  have all been on the same ride and theme park.   Nicolasayssomething Mon, 11 Feb 2008 00:00:00 GMT My friend's 4 month old son David just passed away this weekend of Ewing's. Stay strong and keep fighting.  Cancer is the invisible beast.  Motherhen Tue, 11 Mar 2008 00:00:00 GMT