Noura was diagnosed in Oct 2018 with metastatic left frontal lobe ATRT with leptomeningeal spread. She had GTR, a VP shunt, 6 weeks of high dose whole brain and spine proton radiation, and 5 cycles of chemo on the SJATRT trial.
She completed treatment in Feb 2020. She has had stable scans since completing radiation in Jan 2019.
Noura is now 3.5 years off treatment and living life to her fullest potential. She has a host of long-term effects from treatment, but she is happy and loves people, giving hugs and singing/dancing. Her biggest hobby is doing puzzles!
Due to her cognitive delay it’s hard for Noura to make and maintain friendships with kids her age, but everyone that knows her loves her.
Noura's family shares, "We love our Noura. In Arabic her name means light, and she is our LIGHT in sometimes a very dark world. We are forever thankful that she is still here with us!"