Comment

Comment by Stephanie Thompson on September 15, 2008 at 9:01pm

My daughter Nina was diagnosed with alveolar rhabdomyosarcoma at age 6 in Oct. 2005. She responded extremely well to treatment and was in remission after just a few months. She relapsed in Jan. 2007 and died on Nov. 15, 2007 at the age of 8 1/2. Although Nina did not beat the cancer I would be happy to share any information that might help someone else batting rhabdo. I just want to DO SOMETHING!

Comment by Cancer Warrior Shane on September 6, 2008 at 11:08am

My son was Dx 1-3-2006 with Chondrblastic Osteo sarcoma, two amputations and a year of chemotheraphy. Shane relapse 5-6-2008 and again just recently. We just had six tumors removed from both lungs in July and they are back in both lungs, more aggresively September 2008. We are putting on the battle boots again and will win this war! He has that positive attitude which helps all of us get through this. He has a sister Ciarra 16, and a brother, Kenneth 15 they have been a great support!

Comment by Laura Ortiz on August 13, 2008 at 12:59pm

I am one of the families Debb connected with during Alexa's treatment. I agree that we need to do all we can to raise awareness and be there for people who are faced with this rare kidney cancer. My son is doing very well in spite of the cancer and the treatments that followed. I am happy to share our positive experiences in the 11 years that have followed the removal of Dakota's kidney, the chemo, and the radiation. He's our inspiration!

Laura
Mom to Madi, 15 and Dakota, 12, DX: Clear Cell Sarcoma of the Kidney 5/5/97

Comment by Alexa's Mommy on August 12, 2008 at 11:22pm

My daughter, Alexa, was diagnosed with Clear Cell Sarcoma of the Kidney last June. I've been able to 'connect' with about 10 other CCSK families from across the world and we are noticing differences in how are children are being scanned 'post' treatment. We often e-mail each other, so we can stay on top of what each hospital/doctor is recommending. If there is one thing I've learned this last year, it is that 'we' are our children's best advocates and that is exactly what I intend to do-advocate. Feel free to e-mail me. Thank You!Debb Moore

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