Nora was your typical 6-year-old active in dance, soccer, track and taekwondo. She prides herself on being strong and healthy! But Nora started having headaches, neck pain and light sensitivity in late summer and into fall 2023. Her pediatrician and pediatric neurologist ruled out anything serious, and she saw a physical therapist regularly to manage these issues. Unfortunately, in early March 2024 she fell several times in one week, and just days later, Nora was diagnosed with diffuse intrinsic pontine glioma (DIPG). DIPG is a rare and inoperable brain tumor and is typically diagnosed in children between the ages of 5-7. These children are given nine to 12 months to live and currently, the only standard of care is radiation to prolong life. Currently, DIPG is the leading cause of pediatric brain cancer deaths.
Nora started six weeks of daily radiation in April. It was very scary and traumatic for her, yet she handled it like a fearless warrior. She made it to school most days where she found joy, love and comfort from her teachers and friends. A follow up MRI in June showed the radiation did shrink the tumor. At the same time, she was accepted and enrolled into a CAR T Cell immunotherapy trial at Lucile Packard Children’s Hospital.
Nora and her parents arrived in California on Monday, July 29 to undergo this treatment. The side effects are daunting. Her family is hopeful the immunotherapy will shrink the tumor and Nora will get some relief from the pain and swelling while also regaining strength to get back to running, jumping and her favorite — tackling the monkey bars. After the initial eight-week stay, Nora and her family will travel to California and repeat the immunotherapy treatment every four to six weeks for an undetermined amount of time.
Nora’s family has vowed to use this diagnosis to help other families with the same disease and bring awareness to DIPG, knowing that a powerful event like Pedal the Cause can help.
