News & Press

Ruby’s Story: Fighting Melanoma as a Family

Guest blog post by Ali Thackeray, mother to six-year-old pediatric melanoma fighter, Ruby, and member of the Pediatric Melanoma Parent Steering Committee:

Ruby was born in March 2013 with a large vascular mass on her neck, diagnosed as an atypical nodular melanocytic proliferation – a big bumpy mass derived from a mole. They thought it would grow slowly, but then it shrunk! In November 2014 it grew rapidly and she had surgery in January of 2015.  After being removed, there was worry of melanoma in the mass, but all her scans were clear and we thought all was well.

In March 2016, two weeks after her third birthday, Ruby was diagnosed with metastatic melanoma after a routine scan. Tens of spindle cell tumors were in her lungs. We tried an immunotherapy drug in April/May 2016, but we didn’t think it worked so we stopped all treatment and enjoyed the rest of the year together as the tumors stayed stable.

The immunotherapy may have been responsible for stabilizing the tumors so she went back on nivolumab from January to November 2017, when it became apparent it wasn’t working and the tumors were slowly growing. Ruby visited St. Jude Children’s Research Hospital where further testing discovered a gene mutation in the lung biopsy. We were recommended a couple of drugs that target it. She has been on a clinical trial (phase 1 drug) of entrectinib since December 2017 which has melted away the tumors! Her most recent scans in February 2019 show it is still working. Ruby had a successful surgery to get out a few remaining tumors and will continue on the trial drug for maybe another year or two. Ruby has a grandfather and two aunts who have had melanoma and as a family we all go to the dermatologist annually while Ruby goes every 6 months. We are thankful for our journey thus far and recognize the importance of knowing that anything (like melanoma) can happen to anyone, to trust in God and enjoy our time together.

 

September is Childhood Cancer Awareness Month and the MRF is honored to share Ruby’s story of boundless courage and perseverance. By supporting cutting edge research and new, more effective treatments, we’re working to ensure that melanoma becomes a closed chapter as Ruby’s story continues into a long and healthy life. Please consider a tax-deductible gift to support this important work:

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