How is Neuroblastoma Diagnosed?Braving Neuroblastoma
Braving Neuroblastoma with Devon
and Leah Still
United Therapeutics Oncology is proud to partner with former NFL player Devon Still and his daughter Leah, a pediatric high-risk neuroblastoma survivor, to launch Braving Neuroblastoma. This educational initiative supports and provides comprehensive resources to families touched by neuroblastoma, no matter where they are on the patient journey—newly diagnosed, in treatment, or after treatment and beyond.
Still Standing Together
Learn more about the neuroblastoma journey by reading about Devon and Leah's experiences and downloading the Braving Neuroblastoma resources.
A parent's perspective–Read about Devon's journey
In June of 2014, as Devon Still fought for his spot on the Cincinnati Bengals, his daughter, Leah, fought for her life.
Leah, at the young age of 4, was diagnosed with high-risk pediatric neuroblastoma, a rare childhood cancer that mostly affects young infants and children under the age of 5. This devastating disease is the third-most common childhood cancer in children less than 15 and accounts for 15 percent of childhood cancer deaths. They were told that Leah had a 50-50 chance of survival.
Devon recalled that time to be a whirlwind of emotions and a race to learn as much as possible, as he faced the task of making many important decisions.
Up until then, he had always felt prepared for whatever had come his way and for the first time, he didn’t know what was going to happen or what the “right” decision was. He was new to the cancer community and had not known any other families impacted by childhood cancer then. He did everything he could to educate himself by reading as much information as he could lay his hands on and preparing for every doctor’s visit with questions. He knew that Leah’s best hope was his ability to be the strongest advocate for her and to make decisions in an informed way.
Following extensive personal reading and multiple consultations with Leah’s care team, Devon made the decision to enroll Leah in a clinical trial for a treatment that specifically targeted neuroblastoma cells.
At the same time, he had Leah start an extensive treatment regimen that included chemotherapy, surgery, radiation, and additional experimental treatments. Unfortunately, the disease was still spreading. He was undeterred by the outcome and made the decision to enroll her in a second clinical trial shortly after. This time, the study also included the use of an antibody therapy to help find and destroy cancer cells. All in all, Leah had a total of 41 days of chemo, 40 days of antibody therapy, 19 days of radiation, a seven-hour surgery, and a stem cell transplant. On March 25, 2015, 9 months after they first received the devastating news of Leah’s diagnosis, Devon was told by Leah's doctors that she had no evidence of disease (NED) and was officially in remission.
Today, Leah is 13 years old and 8 years cancer-free. Getting to this point was no easy feat and Devon wants to share his game plan for Braving Neuroblastoma with families going through a similar journey.
Study Devon's playbook for Braving Neuroblastoma
A survivor’s perspective–Read about Leah's journey
Leah Still’s journey began in June 2014 when she was diagnosed with high-risk neuroblastoma at the young age of 4. This devastating disease is the third-most common childhood cancer in children less than 15 years old and accounts for 15 percent of childhood cancer deaths. At diagnosis, Leah’s doctors gave her a 50-50 chance of survival, and this is when the fight of her life began.
During Leah’s fight with neuroblastoma, she was enrolled in 2 clinical trials and underwent:
Two rounds of chemotherapy
Radiation therapy
Antibody therapy
Surgery
Stem cell transplant
On March 25th, 2015, she was told she had no evidence of disease (NED) and was officially in remission. Today, Leah is passionate about supporting and providing guidance to other children impacted by cancer. She also has written a book and raised funds to help other families in need.
Read about what life for Leah has been like Braving Neuroblastoma.
Braving Neuroblastoma Resources
A series of four beautifully illustrated books
Each book highlights different stages of the high-risk neuroblastoma journey.
The Big Adventures of Little Skivolo
The Big Adventures of Little Skivolo helps families understand diagnosis and treatment.
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The Next Big Adventure of Little Skivolo
The Next Big Adventure of Little Skivolo focuses specifically on the antibody therapy phase of treatment.
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Little Skivolo’s Big Book of Fun
Little Skivolo’s Big Book of Fun, an activity book to help entertain kids and families during hospital stays.
Zara Takes Off
Zara Takes Off inspires hope and encouragement as families transition to life after treatment. This new release includes a personal foreword penned by Leah, sharing details of her personal journey.
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