Last month marked a significant step forward in our commitment to make federal funding for cancer research a national priority.
Guest Post: Sharing My Story on Behalf of All Childhood Cancer Survivors
Mariah Forster Olson is an ACS CAN Ambassador Constituent Lead (ACT Lead) from La Crosse, Wisconsin. I’m very pleased to feature this guest post from Mariah, who shares her experience as a childhood cancer survivor and why she traveled to Washington, D.C. this week to advocate on behalf of other patients and survivors during the 2019 Childhood Cancer Action Days.
I was diagnosed with neuroblastoma at the age of one, when doctors found a large tumor occupying the right side of my chest, pushing against my right lung, growing out of several levels of my spine and wrapping around part of my heart. Neuroblastoma is the most common type of cancer in infants, with approximately 800 new cases diagnosed each year in the United States. I needed 18 rounds of radiation and additional surgery to remove my tumor. The severity, location, and advancement of the tumor made my cancer very difficult to treat successfully, and I was given a low probability of survival. However, a new, two-year experimental chemotherapy protocol was presented to my parents as a chance to raise my odds of survival. Although the experimental chemotherapy was a difficult treatment process, it’s ultimately what saved my life and I benefitted greatly from the research that made that treatment a reality.
I am so thankful to be alive, but childhood cancer survivorship can be a long, lonely, difficult and painful journey. As a result of my cancer and its treatments, I’ve had 43 surgeries, am at risk for eight different secondary cancers and have about 100 different disorders, diseases, and medical issues, which are also known as late effects because they can occur many years after treatments. Furthermore, I deal with severe chronic pain in my muscles, bones, nerves, scar tissue and in the thoracic scar from the removal of my tumor.
Despite a lifetime of medical issues, I’m incredibly grateful and blessed to be alive and to use my story and experiences to help others. I share my story often, focusing on hope and optimism. Most importantly, I work with nine different neuroblastoma, childhood cancer and general cancer-related organizations, including ACS CAN. That work provides me with amazing opportunities to share my story and advocate on various issues related to cancer, one of which brought me to Washington, D.C. today.
This week, I attended the 2019 Childhood Cancer Action Days where I had the opportunity to talk about my experience with legislators and ask them to fund cancer research and the Survivorship, Treatment, Access, and Research (STAR) Act, as well as support the Palliative Care and Hospice Education and Training Act (PCHETA). Currently, scientists and researchers are on the verge of discovering new childhood cancer treatments, as well as better, less toxic treatments that will result in fewer late effects for survivors. Newly available, cutting-edge treatments had a lifesaving role in my own cancer journey, so I know firsthand how important it is to fund cancer research, which is why I asked lawmakers to provide $41.58 billion in research funding at the National Institutes of Health (NIH). Additionally, adequate funding is needed to implement programs created by the STAR Act, which will continue to research childhood cancer treatments, improve data collection and expand research into the late effects of survivors. We also discussed why lawmakers should support PCHETA to improve quality of life for patients and their families throughout treatment and beyond, which is imperative in the childhood cancer community.
As an ACS CAN volunteer, I feel like my voice is being heard. I was absolutely honored and humbled to attend Childhood Cancer Action Days this year and advocate for future and current cancer patients and survivors. I’m confident this work will make a difference in increasing awareness and support of legislation that benefits the childhood cancer community, as well as provide hope and encouragement to those touched by childhood cancer.