Lidia was searching for answers and when she reached out she found generous people willing to help assist her on the path to mutational testing and an effective treatment plan. She wanted to share those challenges and thank some of the people involved.
Hello, my dear friends and the Life Raft Group Team!
Lidia Kornienko, Ukraine
I would like to tell my story. I cannot keep silent because everyone who helped me deserves kind words and great fame. In January 2020, I found out about my disease, and I was not only in shock, but also terribly confused. I was overcome by questions: where to run, what to do? Really, are there no options and was this diagnosis a fatal verdict? Every day more and more questions arose, and the answers led me into a stupor and then new, more detailed questions appeared. Unfortunately, though I got answers, my treatment did not bring any results. I have a rare GIST mutation, which our doctors have not seen many times before. The doctors followed a general treatment protocol which I went through, but it did not bring a good result. I knocked on a lot of doors – many clinics and doctors, but I there was still no favorable result.
I had to follow the path of a pioneer on my own and painfully studied the terminology, learned how to compose questions and how to find answers from various sources. I floated around the internet to get information about the diagnosis, treatment methods and specialists in a small circle of Ukraine and world practice. Thanks to the Afina Women Against Cancer Group recommendation and information from other people, I found The Life Raft Group, which started its activities in 2000.
When I joined the Life Raft Group, I discovered for myself two very good people: Sara Rothschild and Denisse Montoya. They did their best to help me, but it turned out that it was not that easy, because my tests and CT scans needed to be in English with correct medical terminology. They connected me with my Angel Helper*, who despite her own full-time job, agreed to translate my medical documents from Ukrainian to English.
After work, she translated my tests result, CT descriptions, and other medical documents. She did it quickly and sent all these documents to the U.S. It was a great responsibility for this wonderful woman, who took everything under her control and at the same time supported me and did not let me give up for a single moment, because she herself also faced this problem. My angel took on herself coordination of our activities, optimizing time and actions to achieve the desired result. She quickly and easily plunged into the problem; she acted quickly and efficiently and did not let me lose heart. She did not allow herself to relax and continued her search, finding answers to my questions, which gave me hope. This woman helped me, a simple woman from a village, with breaking through and continuing treatment according to the protocols and clinical studies from America. She knows how important support is, how important it is for a person and their relatives not to be left in isolation, paving the way to recovery.
There are also more people that appeared who cared about my life and situation. The Life Raft Group connected me with Professor of Pathology Raf Sciot, from University Clinic Leuven, Belgium. My angel helper’s colleagues assisted her to organize the transporting of my paraffin blocks and tissue slides to Belgium and then to the Leuven Clinic for testing. There was also Ukrainian doctor-radiologist, Vitaliy Kovtun, from the Poltava Cancer Center, and his daughter who agreed to provide English translation of my further treatment process to share with the medical community online.
Thank you for your help, it is so valuable. Without you I could not do it. Thank you for your supportive hands that held me, it is so valuable to me in this time. This is a huge support. I’m very glad that this aid arrived. I am doubly happy and proud that there are people in the world who are so responsive, soulful, and not indifferent. I will always remember your kindness. I sincerely thank you from all my heart for your timely and so necessary help, thank you for your assistance. Thank you so much for your hard work, professionalism, warmth, and cordiality. From all my heart, I wish you all big health, well-being in all spheres of life, a peaceful sky above your heads, and prosperity! No matter how strong we are, support make us yet stronger! It is like a breath of fresh air when difficulties pile up and suffocate you! Thanks for the support! I will always remember and bless you!
May the Lord protect you!
*Angel Helper* – we have changed the helper’s name to protect their privacy.