Jules' Story

Jules was diagnosed with Langerhans Cell Histiocytosis (LCH) at 17 months old and had skull, sinus, and skin involvement with a BRAF+ gene mutation. He was treated by the incredible pediatric oncology team at Hackensack University Medical Center in New Jersey and participated in the Make-An-Impact genomic study at memorial Sloan Kettering in New York City. 

After failing LCH protocols Line 1 and Line 2 chemotherapies'/steroid treatments, Jules finally started treatment with a third chemotherapy suggested by our pediatric LCH specialist at Texas Children's Hospital in Houston. He finished treatment on January 3, 2020, and had his port removed on Valentine's Day of 2020 at the age of 4, just a month before the Covid pandemic hit.

This little warrior has had 47 weeks of chemotherapy, 19 three-hour long MRIs, seven skeletal surveys, seven ultrasounds, six biopsies, nine months of steroids, five inpatient hospital stays, four surgeries, two blood transfusions, one CT, one PET scan, countless arm pricks and finger pricks, and he's only seven years old. But, through it all, Jules has been a ray of sunshine and a joy to everyone he has met on our LCH journey, and we thank God for science, education, and continued research into LCH and other Histiocytic Disorders.

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