Local Girl Raising Awareness of Little Known Cancer - NBC 6 South Florida

Local Girl Raising Awareness of Little Known Cancer

Weston girl with rare cancer wants to raise awareness.

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    Local Girl Raising Awareness of Little Known Cancer
    NBCMiami

    Rachel Steif is unable to attend school like most sixth graders.

    The 11-year-old spends most of her time at home recuperating from cancer treatments that zap her energy and appetite. She's lost 30 pounds since being diagnosed in June with a rare tumor that had been growing silently inside her face until this summer.

    “I guess it was in May and Rachel started complaining she was having jaw pain and her jaw was really hurting her” explains her mom Jodi.

    Rachel adds “I also had numbness in my cheek it was numb. I never thought it would be cancer.”

    It was a tumor with a scary and unfamiliar name; rhabdomyosarcoma.

     There are only 300 cases a year among children in the US.

    “You know you start googling rhabdomyosarcoma. I never even know there was such a thing as sarcoma” says Jodi.

    “I think what's important is to listen to your child when they tell you they don't feel well that something is wrong” says Rachel’s father Bruce.

    A mesh mask was bolted around Rachel during radiation. That's over now, but she continues to get weekly chemotherapy at Holtz Children's Hospital. That’s where she sees Dr. John Goldberg from University of Miami Sylvester Comprehensive Cancer center.

    He explains that sarcomas are a diverse type of cancer that arise from connective tissues like muscles, joints, and bones. They are often hidden deep in the body making early diagnosis difficult.

    Because it's so rare, this type of cancer doesn't get much funding.

    “ I just hope we get a message out to pay attention to sarcoma too. Sarcomas are important too” says Rachel.

    She can’t wait for chemo to be over in April so she can go back to school and prepare for her Bat Mitzvah.

    “You have to do a Bat Mitzvah project and I hope to raise money for sarcoma and do a race for sarcoma and get sarcoma out in the world,” a detemined Rachel declared.

    Sunday October 24rth will be the third annual 5K Run/Walk for a Cure to benefit the Sarcoma Foundation of America. The race begins at 7:30 at Central Park in Plantation. Rachel will be there cheering for her mom who will be running in the race.

    You can register there or in advance at www.splitsecondtiming.com