May 7, 2021

Finding Comfort in Giving

Toddler Emma Fares lost her battle with brain cancer, but her legacy will live on through her family’s generous commitment to support pediatric cancer research and innovation at Hackensack Meridian Children’s Health Children’s Cancer Institute. 

In the two years that toddler Emma Fares was healthy, she had already accomplished what most set out to do as an adult. She began playing the piano, counted and spoke in three different languages and immersed herself in learning and playing. In the spring of 2019, Emma began to complain of headaches and her parents, Ribel and Shaomin, noticed that her eyes began to slightly cross.

After an initial visit with Emma’s doctor in California, and a directive for further testing, they received an unexpected diagnosis. Emma was suffering from Embryonal Tumor with Multilayered Rosettes (ETMR), a serious brain tumor primarily affecting children under 4-years-old. To make matters worse, they were hit with more awful news: ETMR has less than a 10 percent survival rate and Emma’s tumor was inoperable due to its size and location.

At the advice of Emma’s doctor, she quickly began chemotherapy. However, after her first cycle, it was evident there was no progress. Her tumor did not respond or shrink, and she was feeling the effects. The doctor advised that Emma go through another cycle, but Emma’s parents were worried. Why put her through more suffering if there was no difference in the first cycle of treatment?

Ribel and Shaomin quickly began to research ETMR on their own. They looked for published papers on ETMR from doctors all around the world and sought the care of a second physician who shared promising news with them: Emma’s tumor was operable. They also came across information about Derek Hanson, M.D., chief, pediatric neuro-oncology at Hackensack Meridian Children’s Health Children’s Cancer Institute, and his team who developed ETMR protocol and successfully treated other children like Emma with ETMR.

Emma underwent three grueling surgeries, each one more than 15 hours long. The prognosis improved as most of Emma’s tumor was removed, but they still needed a treatment that the remaining tumor would respond to. Emma’s parents connected their local physician in California with Dr. Hanson in the hope that his protocol would make a difference in the course of Emma’s treatment.

Soon after, Ribel and Shaomin decided that the best thing for Emma was to temporarily relocate their family to Hackensack, NJ, just a few blocks from Joseph M. Sanzari Children’s Hospital, to continue her care with Dr. Hanson.

After undergoing more chemotherapy with Dr. Hanson’s ETMR protocol, Emma’s tumor shrank by 90%. However, she began to experience complications associated with chemotherapy and devastatingly, in September 2019, Emma passed away at just 3-years-old.

Ribel and Shaomin reflect on their time at the Children’s Hospital and credit Emma’s care team with providing immense warmth and comfort during the most challenging time in their lives. The music therapy program, funded by the generosity of our donors, was Emma’s favorite. The amazing social workers, nurses and doctors provided compassionate care to Ribel and Shaomin, and they were grateful.

Her parents truly believe that Dr. Hanson gave Emma the best shot at surviving and believe in the incredible research being done by Dr. Hanson on ETMR. As only 4% of the federal budget is dedicated to pediatric cancer, Emma’s parents decided to give back to Tackle Kids Cancer in memory of their daughter.

In 2020, Ribel and Shaomin made a generous gift to Tackle Kids Cancer, which included a match from their employers. In 2021, they committed another incredibly generous gift to support Dr. Hanson’s crucial research. They stress their hope in finding new ways to optimize treatment for ETMR and ultimately, a cure.

As we acknowledge May as Brain Cancer Awareness month, we pay tribute to all the bright lives like Emma’s, who were lost too soon.However, it is through the strength of her family that Emma’s legacy will live on and make a difference for other children suffering from ETMR. We thank the Fares family for their continued dedication and confidence in what our physicians and researchers can accomplish, and applaud them for making such a difference in funding innovation and discovery for ETMR.