My parents and sister were nearby when I woke up from a biopsy on August 11, 1987. Moments later, the words “You have Osteogenic Sarcoma” changed everything.
In the 80s, you never heard of a kid getting cancer. Cancer as a 15 year old back then was very isolating; no internet, social media, movies, tv shows or books portraying a sick child. My family was alone and even shunned. Hope for survival was offered through a year of chemotherapy and many surgeries on my leg and lung. Pure torture which hasn’t changed much today, 33 years later.
23 years after OS, I was diagnosed with breast cancer. I was 38 with a husband and two healthy sons. Cancer, why me, again? I turned to Facebook, joining a Public Osteosarcoma Group. Shortly after joining, I became the administrator. In Jan 2019 I started a Private BoneCancer Support Group. Today, I’m honored to advocate for 5,000 OsteoFamilies. I was so fortunate to survive and thrive after OS, surviving has brought many challenges and survivor’s guilt; disability, broken prostheses, multiple surgeries, fear, pain, cancer scares and breast cancer. But, I survived. All these challenges are a driving force behind supporting all members of the FB groups, they are my inspiration.
My story does not end here. In June, 2018, I was diagnosed with ALS. Through the horror this disease brings, with a life expectancy of 2-5 years, and the abilities it has already taken from me, I will never stop my advocacy of supporting families with OS. As a two-time cancer survivor and ALS patient, I choose to remain positive. When I am told there is no hope, I remember days when there was little hope but yet, I survived. I believe in a better future for OS, thanks to MIB Agents, and even for ALS.”
MIB Note: We are grateful for, and inspired by Amanda Braunfeld Levine everyday. She quietly demonstrates courage in the face of significant pain and adversity, while simultaneously battling a nefarious disease. The manner in which Amanda supports and cares for those she serves through her own pain is an example of the best of humanity and how to Make It Better.