Surviving Ewings on the sacrum (bottom of spine) 10 yrs old

Hi

My 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.

On Feb 11, 2008 12:00 AM Nicolasayssomething wrote:

Hi

My 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.

 

 

Hi,

My Son who was 18yr old was diagnosed January  this year with Ewing Sarcoma in sacrum. It was a very hard journey, so I understand what you went through. We also went from a very fit and active child to someone who is draging his leg and in pain. It happened gradually over a couple of months. We done 2 X-Rays and it showed nothing, so we sent him first to Physio for 3mth and then to Chiro for 3mth before we had a MRI which confirmed what he had. He was in extreem pain. The doctors here in Australia dont have much on it as it is so rare. We have finished Chemo and Radiation 2mths ago. We decided not to remove it as there is so much loss, like left leg, bladder, bowel and many more, and just turning 19 we didnt want that and the risk of survival was very low if we did go ahead. We are sort of in remmition. He is doing very well but it still has effected his lifestyle as he still has pain in his lower back. He can't do any exercise, lifting etc. I have searched the internet for further info to no avail as it is so rare. I would love to hear from anyone surviving with the same sarcoma as my son so I can have more info as the doctors still say there is a very small % it could come again and the only option left then is surgery which we hope it doesnt. I hope your boy is doing well. My prayers are with you and with everyone who is diagnosed with cancer.