How Surviving Childhood Leukemia Shaped Amanda Talley’s Future

Amanda Talley sometimes thinks about the numbers. Five: The age she was diagnosed with a fast-growing blood cancer. Three: The years she spent undergoing treatment, including grueling chemotherapy. Fifty: The age adult survivors of childhood cancer are estimated to have an average of 17 chronic health conditions, nearly double what the general population faces at that age.

Amanda knows those chronic conditions intimately, from chronic back pain to seizures to damaged veins to mental health issues. However, numbers don’t tell a story. They can’t describe the moments of peace and joy she cultivates with her family, or the resilience and resourcefulness she’s shown in the face of some of the toughest obstacles.

“I don’t live like I’m sick,” said Amanda, 47, who lives in Marianna, Florida, and receives treatment through UF Health’s Adult Cancer Survivorship Program. “No matter what my limitations are, I don’t live like I’m sick. I get up every day, it may not be 7 a.m., but I get up, and I make my chores like an exercise routine. I’m a person who loves to laugh and dance, no matter how I feel, because I know it produces happy hormones and all the feel-good portions of the brain get a tickle.”

She finds peace at the beach, in beading and crafts, in puzzles and word books. And, above all, spending time with her two grown boys and three grandchildren. Doctors told her she was unlikely to get pregnant. If she did, they said she probably wouldn’t carry the baby to full term.

“My kids are my biggest accomplishment,” Amanda said. “My children became my reason to push, when me became three. The fact that I knew God was in control still sustains me to this day.”

Lifelong impact

Leading up to her cancer diagnosis, Amanda had flu-like symptoms and bruising. One day, she was at the beach with her family when she got a nosebleed that wouldn’t stop. She was later diagnosed with acute lymphoblastic leukemia, or ALL, and underwent treatment at a children’s hospital in Alabama.

She has few memories of treatment. They come in frames, flashes of her trademark joyful spirit interspersed with the pain and isolation. Like flipping from black-and-white film back to color. In one, it takes eight people to hold her down for a bone marrow biopsy, a procedure that involves inserting a large needle into a patient’s lower back. The pain can be excruciating. In another, Amanda has IVs in both feet and is being pushed around the lobby of the cancer unit, trying to make everyone laugh.

Today, more than 90% of children diagnosed with ALL can expect to be cured, thanks to advances in cancer treatment and research. For all cancers combined, the five-year relative survival rate for U.S. children and adolescents now exceeds 85%.

Yet, pediatric cancer survivors are likely to struggle with a range of long-term physical, emotional and financial challenges. These include chronic fatigue, chronic pain and cognitive changes.

“The physical challenges are hard because my brain says, ‘yes, you can,’ when my spine reminds me that I can’t,” Amanda said. “My diet must stay just as stable as my exercise. Survivorship will never mean that nothing is wrong.”

She’s also been dogged by mental health issues and struggled to find the care she needed.

“The mental toll is lifelong because your outer being only aligns with the inner during treatment,” she said. “After that, it’s all inside for a large group of survivors. I have heard a million times, ‘looking at you, we’d never know,’ and people don’t. We don’t look like what we’ve been through. That’s a double-edged sword. Support is so essential for years after. The reality is we are changed.”

Amanda has channeled her struggles into a thirst for knowledge, empowering herself with practical ways to improve her health and focusing on the victories. She encourages others to research and apply what they learn.

“Make it a game and fun,” she said. “Learn one new thing a day. Then implement that thing and go to something else. Spend time with yourself and love on yourself.”

She advises others to take a holistic approach to healing.

“I believe you can’t just focus on the body and not heal your thoughts,” Amanda said. “My advice is not to ignore anything that could seem very minor. To not fear doctors, because the knowledge is the power.”

Survivorship godsend

In the UF Health Adult Cancer Survivorship Program, she has found a dedicated advocate in Katie Warren, MPAS, PA-C, an advanced practice provider who directs the program.

“The survivorship program has been a godsend because now I am heard, understood and advocated for,” Amanda said.

Katie has helped Amanda tackle several medical issues since meeting her in September 2023 and coordinates her care with physicians in the Panhandle. Most recently, she’s helped connect Amanda with UF Health’s ENT service, which accurately diagnosed her ear issues and put a plan in place to manage them.

“These issues are likely a result of her therapy as a child, and getting a proper diagnosis has been difficult,” Warren said. “I am excited for her, as this upcoming treatment will improve her quality of life, and that is exactly what our Cancer Survivorship Program is all about.”

Healing isn’t linear, of course, and it’s measured in much more than doses and pills, waiting rooms and vital signs.

For Amanda, it’s sunrises on the beach, the brilliant reds and oranges captured on her camera roll lighting up even the blandest of doctors’ offices. It’s snuggles with grandchildren and gap-toothed smiles that melt her heart. It’s being present and hoping for more of those things.

“Healing is just peace,” Amanda said. “Clear scans and peace. Healing to me means being cancer-free while understanding the fight. It’s mind, body, spirit and, most importantly, support.”