Comment

Comment by Bruce Shriver on May 12, 2011 at 12:07am

Amy,

There is a very active online support group for rhabdo on ACOR. You can sign up to participate at http://bit.ly/kRIjHW. There are a lot of helpful people there.

Hope this helps,

Bruce

Comment by Amy on May 11, 2011 at 9:35pm

I'm new to this group, but not to pediatric cancer.  Unfortunatly, my daughter has faced the beast twice in her short 8 years, 1st a battle with leukemia and now Rhabdomyosarcoma.  Rhabdo is a scary animal and is much different than ALL.  I would be really interested to talk with anyone who's child is experiencing a second cancer, particularly rhabdo...

 

http://www.caringbridge.org/visit/marisarosa

 

~Amy

Comment by Bruce Shriver on April 24, 2010 at 12:57pm

Hi Angie - we've post the descriptions and locations of the events that are scheduled to occur during the International Sarcoma Awareness Week on www.Team-Sarcoma.net. - Best, Bruce

Comment by Brenda Everson-Wiesman on April 24, 2010 at 12:42pm

Thanks for the info about the Everday Sarcoma Heroes project. Besides my son who has been in remission almost 4 years now from osteosarcoma, I am inspired by a friend who is in her thirties now who had it when she was a teen. Both are walking on our team "Hope for Kids" in our Omaha CureSearch Walk on June 5th.

Comment by Angie Giallourakis on April 23, 2010 at 10:16pm

Hello,
It's good to hear that there is a support group for Sarcoma Heroes. I wish I knew of this group when my son STeven was diagnosed. My son was diagnosed with stage four osteosarcoma March 2006 in his spine. Although he survived the treatments and went into remission. In November 2008 he was diagnosed with Secondary AML. He had a Bone Marrow Transplant in March 2009. He is officially in remission! Thank God.
I would love to participate in Sarcoma Awareness Week, but hopefully, all will be well, and our family will be on a vacation:)
Please keep me posted on upcoming events.
God Bless.
Angie Giallourakis

Comment by Bruce Shriver on April 23, 2010 at 11:39am

Tell us who has changed your world -- the Everyday Sarcoma Heroes project. Everyone who has dealt with sarcoma knows a hero or two. Heroes support, encourage and inspire us in extraordinary ways. Just when we need them most, they are there. They challenge us, comfort us, and give us hope.

The Team Sarcoma Everyday Heroes competition invites you to tell us about your hero. Entries will be published at the Team Sarcoma website, and three winning submissions will be chosen. A donation will be made to sarcoma research in honor of each winner’s hero, and each winner will choose which type of research their prize will fund.

The deadline for submissions is June 1, and everyone who has been touched by sarcoma is invited to participate. Visit http://bit.ly/amQ3ND and click on “Tell us about your hero!”

Please spread the word about this competition within the sarcoma community. Would you please consider sending a personal note to some of the sarcoma families that you are in contact with suggesting that they participate as well and post it on your blog, website, etc. to distribute it far and wide? We would like to hear stories of Everyday Sarcoma Heroes from all over the world.

Bruce

Comment by Bruce Shriver on April 23, 2010 at 10:37am

'd be happy to talk with anyone who would like to plan a Team sarcoma event during the International Sarcoma Awareness Week, July 17-25. you can send me a note at shriver@genesis2.com. Also see www.Team-Sarcoma.net. Bruce

Comment by 314jeanine on February 1, 2010 at 7:21pm

I am planning an event for Team Sarcoma in the St. Louis, Missouri Area if anyone is interested please contact me...We can use all the help offered.
Thanks

Comment by Lisa Binkley on November 7, 2009 at 11:06am

My son Aiden has stage 4 embroynal Rhabdo. He is 10 yrs old. He just finished his 17th chemo of 18. We are close to finishing but still so scared. It's nice to find this group, wish I had in the begining.

Comment by Sarah DiGerolamo on September 10, 2009 at 8:34am

Dear Melissa,
Hello Melissa. I wrote on your wall also, but not sure if you will see that comment.... I am truly sorry to hear that Chase has relapsed with a new cancer. It is very, very scary but believe in your heart he will be okay again. Vinny (my 5-yr-old) had Rhabdomyosarcoma in the base of the skull last year that spread from the tongue, eyes, and into the Left Temporal Lobe of the brain. Rhabdo is the same family as Osteosarcoma. Osteo is the bones, and Rhabdo is in the muscles and soft tissues. Vinny has been CANCER FREE for 6 months, but they say he does have a very high chance of relapse due to the brain radiation and location and Anaplasia last time. I do know a lot about the disease... and do have several friends with Osteosarcoma - most of them are teens. Two of them have had it once, two have relapsed 2x with it, and one has relapsed 3x with Osteo and AML. They are all still alive and doing well. I am also in the Rhabdo-list serv that has a lot of info on Sarcomas. If you want to write, my e-mail is sdigerolamo@gmail.com and Vinny's site is www.caringbridge.org/visit/vinnydigerolamo

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