My Story as a Caregiver and Patient Advocate
This all started the day we heard the words, "This is better than the best-case scenario." You can go back to your life." I realized I no longer knew what our life meant. For almost two years, we lived in hospitals, separated from my husband and older son, focused entirely on helping our younger son, Viktor, recover. Everything else stopped. How It Started In November 2017, Viktor was diagnosed with Langerhans cell histiocytosis. His treatment lasted nearly two years and included chemotherapy, followed by long periods of waiting for his immune system to recover before the next phase could begin. Like many parents, I was suddenly thrown into a world I didn’t understand. I had no medical background, yet I needed to make sense of complex terminology, treatment plans, and decisions that affected my child’s life. Viktor during the treatment Learning Medicine Language One moment from the early days still stands out. A nurse asked me to measure Viktor’s diuresis. I didn’t eve...
