thack smack: 365 days of Flabe

Flabe, what? Yes, that is Jane's nickname courtesy of Mark.

Go to Pier23 for pics of Jane on her 1st birthday

#TeamThack

please ask permission to use any photos

thanks!

Our 3rd awesome daughter was born March 2013 with a large vascular mass on her neck, diagnosed as an atypical nodular melanocytic proliferation. Surgery January 2015. There was worry of melanoma in the mass after being removed, but all her scans were clear until...March 2016 Ruby was diagnosed with metastatic melanoma, two weeks afer her third birthday. Tens of spindle cell tumors in her lungs. We tried an immunotherapy drug April/May 2016 that may have been the cause of stabilizing the tumors. Back on Nivolumab January-November 2017. A visit to St.Jude Childrens Research Hospital and further testing there discovered a gene mutation in the lung biopsy and a couple drugs that target it. She has been on a clinical trial (phase 1 drug) of Entrectinib since December 2017. She had surgery Feb 2019 to remove some suspicious (but benign) looking tumors and got her port out in May. She continues to take the drug every day and hospital visits every 4 weeks. Her most recent scans show there is no evidence of disease! She will continue on the trial drug for maybe another year or two.... in the meantime we are trusting in God and enjoying our time together.

Thank you for your love! If you'd like to donate to #RallyRuby you can go to GoFundMe.com/RallyRuby

You can mail funds, tax deductible, to:

TKJ Charities Inc.

2413 Royal Lane

Sandy, Utah

84093

They will match funds 20% and the funds are used solely for her medical bills and expenses related to Ruby.

Tuesday, January 17, 2012

365 days of Flabe

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