My childhood was forever changed on August 28, 2003, when I was diagnosed with pre-B cell acute lymphoblastic leukemia at the age of ten. I completed treatment for the first time on April 17, 2006, but just six months later, on September 15, 2006, I relapsed with cancer in my central nervous system at age thirteen. What followed was another two years of treatment, until I finally completed therapy on September 8, 2008. In total, it was a five-year battle that tested every part of me.
I remember being scared my hair would fall out, and afraid of losing my friends because I already understood what death meant. My family was devastated and in shock, constantly asking themselves why this was happening to me. They were overwhelmed with fear, uncertainty, and heartbreak, trying to understand how our lives had changed in an instant.
The road was exhausting. I endured a coma, a stroke, severe infections, and setbacks that left me relearning how to walk, talk, and eat, as well as how to write, hold objects, and manage even the simplest daily tasks. Through it all, I was held by God’s grace, my family’s love, my medical team’s commitment, and my community’s support.
Survivorship: The Next Chapter
Finishing treatment did not mean the struggle was over. Finishing treatment is not the end of cancer, it is the beginning of survivorship. Survivorship brought new challenges, health problems that didn’t go away once cancer was gone. Epilepsy, memory difficulties, and other late effects became part of my daily life.
Being a survivor doesn’t mean going back to the way things were before cancer. It means learning to live with the changes, and still choosing hope, joy, and purpose.
The Turning Point
In May 2019, I was admitted to UVA’s Epilepsy Monitoring Unit. Lying in that hospital bed, I felt completely crushed, filled with anger and despair. I had just begun to feel free from my medical past and to reclaim my independence, and then I was told I could no longer drive because of seizures. That news shattered me. After all the progress I had made, the loss of my independence felt like starting over, and I fell into a deep sadness and isolation. Being diagnosed with epilepsy forced major life changes, and the weight of that diagnosis sent me into a place of depression. Unfortunately, I still live with this neurological condition today, and the impact on my daily life remains real.
But on June 2, 2019, something shifted inside me. A voice said,
“Juanita, stop crying, get up, use your voice, and take action.”
That was the moment BeholdBeGold was born!
The Power of “Behold”
The word “behold” is often used in scripture to draw attention to something important: look closely, this matters. That is exactly what BeholdBeGold is about, calling attention to the reality of survivorship and the strength of survivors.
Gold is the color of childhood cancer awareness. For me, it represents courage, resilience, and light. To behold the gold means to recognize both the struggles and the victories of survivors everywhere.
Why Survivorship Needs Attention
Children who go through cancer treatment face unique risks because their bodies are still growing. The medicines, therapies, and procedures that save lives can also leave long-term side effects, known as late effects. These challenges can affect almost every part of life.
Some survivors live with cognitive changes that make memory, focus, or learning more difficult. Others face mental health struggles such as anxiety, depression, or trauma linked to their medical experiences. Even years later, a sound, smell, or hospital visit can bring painful memories flooding back.
Fatigue is another major challenge, a deep exhaustion that doesn’t go away with rest and makes school, work, and social life harder to manage. Survivors may also face sensory problems such as hearing or vision loss, hormone and growth issues that affect development, organ damage that impacts the heart, lungs, liver, or kidneys, and mobility and pain challenges that limit movement and independence. For many, there are also reproductive health concerns that affect fertility and future planning.
These are not just medical terms, they are everyday realities. They shape how survivors learn, work, build relationships, and dream about the future. That is why survivorship care is so important. Life after cancer is about more than being disease-free. It is about making sure survivors have the understanding, resources, and support they need to thrive.
The Mission of BeholdBeGold
BeholdBeGold is dedicated to empowering and supporting childhood cancer survivors as they face the lasting effects of treatment.
We envision a world where childhood cancer survivors are celebrated, supported, and empowered to live full and meaningful lives. We strive for a future where every survivor is valued for their strength, connected to the right resources, and inspired to thrive beyond their cancer journey.
Beyond Survivorship: Who I Am
Survivorship is a big part of me, but it’s not all of me. I love to laugh, to dance, to travel, and to spend time with family and friends. I enjoy good coffee, learning about people and cultures, and turning challenges into opportunities for growth. More than anything, I love life itself, sweet, delicate, and precious. These things remind me that life is fragile but also beautiful, and that every moment is worth embracing.
Moving Forward with Purpose
Cancer changed my childhood, but survivorship gave me perspective. Today, more than twenty years after my diagnosis, I carry both scars and gratitude, and a strong commitment to make sure that survivors are seen, supported, and celebrated.
Because survivorship is not just about surviving, it is about beholding the gold in every journey, and making sure no one walks this path alone.
If you are a survivor, know that you are not alone. If you are an ally, I invite you to stand with us, listen to our stories, and help us build a future where every survivor can thrive!
Learn How You Can Help Conquer Kids’ Cancer.
