The story detailed below is an account written by Juanita, a survivor of pre-B cell Acute Lymphoblastic Leukemia. Juanita is currently pursuing her dream of becoming a Certified Child Life Specialist and is volunteering in the hospital where she was treated.
I was feeling weakness, fatigue, and low energy from anemia complications and I had unexplained high fevers, bone pain, limping, and was bruising very easily. I constantly would complain to my parents and the school nurse about all my symptoms. I was diagnosed on August 28, 2003.
My treatment consisted of 15 chemotherapy drugs and radiation to my head.
During my first treatment I experienced CNS infarcts during induction and klebsiella cellulitis requiring port removal. During my second treatment I was in isolation for a CNS relapse. I have experienced a stroke, seizures, a learning disorder/disability and a neurocognitive deficit.
I rang the bell twice. During my first round, I rang the bell on April 17, 2006. I rang the bell for the second time on September 8, 2008.
My childhood cancer journey came with a tremendous amount of uncertainties, stressors, obstacles, barriers, suffering, and adversities. Not just for me, but also for my family who underwent this unimaginable pediatric disease with me. It affected us all mentally, physically, emotionally, socially, and spiritually. A surreal state of disequilibrium, shock, and disbelief arises when childhood cancer enters one’s life. However, during this period of distress, there are always people, resources, and organizations that help us cope, and bring us a sense of relief by supporting us and letting us know we are all in this fight together. The American Childhood Cancer Organization did just that, it helped my family and I feel valued, and acknowledged by providing us with resources (both in English and Spanish) such as books that helped guide us step by step through our childhood cancer journey, age-appropriate picture books for my siblings and I, which helped explain my diagnosis and the medical terminology that I would be hearing. ACCO also provided my medical staff with Hero Beads in which they would enthusiastically give to me, every time I completed and conquered a medical procedure, and after surviving two rounds of childhood cancer, and seeing the long chain of beads at the end of my treatment, I then understood the symbolic meaning behind my beads and felt like a true warrior. As a young adult childhood cancer survivor, I have been able to manage my late effects, however, I still undergo many life challenges and barriers and I know more could have been done to prevent my existing health conditions. ACCO has helped me by providing information about the long-term effects of childhood cancer, and to understand the importance of research, and why we must devote our time, advocate, and raise funds for effective treatment protocols, support services, and prevention efforts for this vulnerable population.
I graduated from Virginia Polytechnic Institute and State University in 2017 and received my bachelor’s degree in Human Development and Family Science. I aspire to be a Certified Child Life Specialist therefore, I am in the process of completing coursework requirements related to this field, volunteering at my local children’s hospital (the same hospital where I was treated), and currently applying for child life internships! I have also been very active in spreading childhood cancer awareness to my community, educators, and congressional staff members in my state. Also, about a year ago I initiated a movement called “BeholdBeGold” my personal blog/platform/website that raises awareness for childhood cancer and late effects. I became inspired to begin this beholdbegold movement because my two rounds of survivorship also came with countless life obstacles and barriers. As a young adult, I felt the need to speak up for this specific population by sharing my personal story with the world, (as I know others can relate) and how the late effects of childhood cancer still affect me today though, I don’t let these late effects break me down but rather lift me up knowing that the biggest confrontation in my life (cancer) has already been defeated.
After treatment ended, my goal was to graduate high school on time with my peers even if that meant staying after school every day or taking summer courses. I was able to accomplish my first goal by graduating on time, and then move on to my second goal which was to attend my local community college and receive my associate’s degree in Early Childhood Development which I was able to also accomplish. At this point I was determined that I wanted to pursue the child life profession, therefore my third goal was to transfer to a four-year college where I received my bachelor’s degree in Human Development. My fourth and current goal (career-oriented), is to become a Certified Child Life Specialist. Other goals I desire to accomplish in the future: write a book about my past childhood cancer experiences, the struggles I faced and overcome due to the late effects of my cancer treatment, and lastly, keep growing my BeholdBegold movement so that I can eventually build a nonprofit organization for childhood cancer survivors who struggle with the late effects of cancer treatment.
What is one piece of advice you give someone on treatment or newly diagnosed?
Many feelings arise while going through childhood cancer, most of these feelings are not happy feelings. You might feel scared, worried, sad, mad, lonely, or jealous and that’s okay to feel this way. My advice to you during these unhappy times is to try to surround yourself with all the things that make you happy. When I was going through childhood cancer, I had many things that made me happy such as my family and my friends who would come to visit me, my favorite tv shows, my favorite blanket or pillow from home, my nurse friends and my child life specialist at the hospital, my favorite comfort foods, my curtains open in my room so I could see the sun and the outside world, taking walks around my hospital unit, and doing fun activities in the playroom by myself, with my siblings, or with friends in the hospital such as arts and crafts, puzzles, video games, board games, or card games. Whether it was people, items, or actions, I always found a way to keep my body calm, keep smiling, keep laughing, keep moving forward even when I felt like giving up. Keeping busy and distracted helped me feel better and not think about all the unhappy feelings that surrounded me.
Follow Juanita here: https://beholdbegold.org/ or on social media @beholdbegold
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