A survivor of childhood cancer, 25 years later: Nessa’s story

Twenty-five years ago in September of 1988, Nessa’s life was forever changed by words that weren’t talked about much back then: childhood cancer. After finding bumps on Nessa’s head and swollen lymph nodes, her mom knew something wasn’t right. After a trip to the pediatrician’s office, they were told to go to Orlando Regional Medical Center (ORMC) to see Dr. Vincent Guisti, a pediatric oncologist, to find out what might be causing these symptoms. Since the visit required an overnight bag, Nessa’s mom, Carol, knew it wasn’t what she’d first suspected – it was something much more serious.

Receiving a heart-wrenching diagnosis

Nessa was eight years old and in the third grade at a local elementary school. That day was picture day- a day that many girls prepare for by selecting their best school outfit and making sure their hair looks just right. As her mom was combing Nessa’s hair, she noticed little bumps on her head, and Nessa had been saying she wasn’t feeling well. The next morning, Carol knew something wasn’t right after Nessa woke up with swollen lymph nodes. Thinking it might be a case of mononucleosis, they visited the family’s pediatrician, where they were told to go to ORMC to see Dr. Guisti, a pediatric oncologist.

Once they arrived at the hospital, Dr. Guisti did a bone marrow biopsy and spinal tap to get a better understanding of what might be wrong with Nessa. Shortly after, Nessa and her family were blindsided by the diagnosis: acute myelogenous leukemia (AML). AML was very rarely diagnosed in children as young as Nessa, and the chances of survival were slim- around 25 percent.

Carol remembers that day like it was yesterday, saying, “I had never thought twice about having a child with cancer. Before Nessa was diagnosed, I had never heard of a child with cancer. It’s just something that we didn’t see often.”

In the following days and months, Nessa would undergo a rigorous treatment plan, the likes of which most of us will never have to face. Dr. Guisti enrolled Nessa in a clinical trial, which required high-dose chemotherapy for 10 months. Even many years later, Nessa remembers it all, down to the most vivid details.

“I remember my parents took me down to Lake Eola to tell me what was wrong and that I wasn’t going home. It was hard to conceptualize for an eight-year-old. Some days during treatment, I would lock myself in the bathroom because I felt like I just couldn’t handle it anymore. Even though it feels like a lifetime ago, it was an important teaching moment in my life to make me the person I am today.”

During Nessa’s treatment, the confidence that her family had in Dr. Guisti and his team never faded. Carol says,

“All of a sudden you have to put your child’s life in someone else’s hands, but they give you confidence in knowing they will take care of your child. They would explain everything to me and gave me a written protocol of everything they were going to do, so that I could play a part in Nessa’s care. I remember during one procedure, nurse Becky was rubbing my back and Nessa’s back at the same time to help comfort us. The supportive system at the hospital was just incredible – from the oncology team, to child life, to spiritual care.”

The beginning of a new era: The opening of Arnold Palmer Hospital for Women & Children

Just after Nessa finished with treatment, she was asked to be a part of the grand opening of Arnold Palmer Hospital for Women & Children. This was such a proud moment for Nessa and her family, as she was now cancer-free and a true representation of the hope and healing that can result from expert care. This new facility was one of only a few in the United States that combined obstetrics and children’s services, increasing the chances of survival for high-risk newborns, also increasing the level of specialized care for children like Nessa who are battling life-threatening diseases and conditions.

From then to now

Twenty-five years later, Nessa has recently started sharing her battle with childhood cancer. Going through school, it was a stigma to have cancer, and she was always knows as “the girl who had cancer” – an identity that Nessa knew didn’t define her as she began searching for her greater purpose in life. Even though she admits that it has been a long, emotional healing process, Nessa now proudly wears the badge of childhood cancer survivor and feels the need to share her story to give hope to other families and children.

When asked how childhood cancer has helped shape the woman she is today, Nessa says,

“I believe that in children who are faced with death at an early age like I was, our eyes are opened to a deeper existence. The experiences you go through open your heart to suffering and allows you to view the world and other people in a very unique way. Given that I only had a 1 in 4 chance at survival, there’s not a day I don’t think about it. But I don’t let the fear of what could happen in the future drive me. I now live with the mentality that I am survivor of childhood cancer, and if I can survive that, I can survive anything.”

Along with having an undeniable passion for life, Nessa has made it a goal to have an extraordinarily healthy lifestyle to help limit the long-term side effects of the treatment she received many years ago. Because of this, she has been instrumental in several studies that aim to identify these long-term effects of treatment as survivors of childhood cancer reach their adult years.

The year of 2014 will be a milestone marked in history for several reasons. In the 25 years that Nessa has been cancer-free, there have been countless children and families who’ve passed through our hospital doors that have experienced similar hope and healing. Many of these kids have gone on to lead healthy, vibrant lives, just like Nessa. And even a quarter of a decade later, Dr. Guisti is still recognized as a pioneer in childhood cancer, as he continues to devote his professional life to treating kids with childhood cancer at Arnold Palmer Hospital, giving them hope for a bright future ahead.