Karina's Battle with Cancer

 

Karina's challenges with cancer began when she was just 10 years old. Her cancer, alveolar soft part sarcoma was a rare cancer without cure. It was metastatic when first discovered (the typical pattern for ASPS), and known to be both chemo-resistant and radiation resistant. Because of the lack of any established beneficial medication and experts who told her and her parents that she had 6 months to live, she and her parents began pursuing all research-based leads that could have the hope of stabilizing her cancer. 

 

Karina's cancer journey took her to Europe for experimental laser surgery, clinical trials for new medications in which she had to petition for age exceptions (there are few clinical trials for children), petition for compassionate use medication, and then appeal of insurance denials because no cancer medications had been approved for her rare cancer. She took every physical and mental challenge in stride, and she saw every new problem as an opportunity to help other people as well as strengthen her faith. We've include pictures of her pomchi Teka because Teka was her Make-a-Wish gift. Teka really blessed her and our whole family's lives. We actually got Teka to pass the 1st level of Delta Dogs so she was an official service animal and could travel on planes.

 

The picture above was from Karina's time in the intensive care unit after she had had open heart surgery to remove a metastasis that had floated up her pulmonary vein into her heart. We learned many lessons along the way and our goals is to share any information that may help others who will follow. 

 

Our website is still under construction, but we will be posting Practical Resources, Spiritual Matters and Cancer, Karina's Cancer Stories, Molecular Profiling, and Insurance and Financial Issues, and Clinical Trials and Obtaining Investigational Drugs.

 

Karina was honored by the Clearity Foundation June 22nd in San Diego 

Karina's Mom gave a short talk to the 200 or so attendees.
A copy of her talk is here:

 

 

 

The following is a Photo Gallery of Karina's Cancer Journey:

 

 

 

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Experimental Trial in California

Karina and Teka visit Dog Beach during their trip to CA to enter an experimental clinical trial (ARQ197). She had to petition to enter the trial because the lowest age was 18 years.