Nikoleta's Story

 In September 2018, Nikoleta first noticed a lump on her left thigh while putting lotion on. It basically appeared out of nowhere, she thought it was odd and set up a doctor’s appointment. After numerous appointments and test, doctors decided to do a biopsy to determine what it was. On December 19, 2018, Nikoleta was diagnosed with Synovial Sarcoma – a very rare malignant, cancer that formed in the muscle of her leg. 

Synovial Sarcoma is a subtype of Soft Tissue Sarcoma, there are over 50 Sarcoma subtypes. Soft Tissue Sarcomas is known as the forgotten cancer because it accounts for 1% of all adult cancers and 15% of all childhood cancers. There are about 800 people per year diagnosed with Synovial Sarcoma, that equates to one in one million. 

In January 2019, Nikoleta opted to have the mass removed. She had her surgery with one of the top Sarcoma Surgeons in New York City. She returned in March to have 8 weeks of radiation treatments. In May 2019, it was discovered that the cancer had spread to her lungs. Nikoleta had her first round of chemotherapy, July 1, 2019. She went on to have 8 rounds of chemo which lasted 6 months. At first her scans showed that she was responding to the chemo and the doctors suggested to do the max 8 rounds only to find out that the cancer became resistant and grew again. 

In January 2020, Nikoleta started a clinical trial through Northwestern Hospital in Chicago which entailed taking a pill for 2 weeks and 1 week off. Her first scan showed tremendous results – shrinkage in majority of her nodules and some had disappeared. However, shortly after the great news, Nikoleta started to have lung collapses, her first in March, second in May and third in July. This turned into several stays at the hospital, surgeries, and chest tubes all during the start of Covid. 

Nikoleta spent two years battling the monster, every day she pushed herself, she was always so positive, her smile would light up every room.  Nikoleta was and will always be the heart and soul of our family, the centerpiece, our backbone. She was the most thoughtful and caring person. She was the youngest of the family, but everyone turned to her for advice. Nikoleta loved her family and fought so hard to stay with us. We will continue to fight for her, and all others affected by Sarcoma. We started this non-profit to help others directly and to raise awareness for this rare cancer. Also, we want people to know just how great Nikoleta was, she was an angel for 28 years on earth and became our angel in heaven on December 10, 2020.