Esther Desrosiers is a sweet, sassy 5-year-old from Nebraska. She loves all things pink, princesses, and Papa John’s. Energetic and silly, she is a proud big sister to two younger brothers and often thinks she’s the boss of her five older siblings. But most of all, Esther has a heart of gold and puts her family’s needs above her own.
In late April of 2022, Jim and Julie Desrosiers noticed Esther’s left eye had begun turning inward. Coincidentally, Ether’s older sister Evelyn had had a similar issue and was seeing a pediatric ophthalmologist, Dr. Sebastian Troia, for treatment. On May 2, assuming Esther was experiencing the same vision problem, the family took Esther to see Dr. Troia. While there, they received the troubling news that Dr. Troia suspected there was something going on with Esther’s sixth cranial nerve. He recommended the family take Esther to Omaha Children’s Hospital for an immediate MRI.
Later that day, Jim and Julie’s worst fears were confirmed. The MRI revealed a mass at the base of Esther’s head, and they heard the words “diffuse intrinsic pontine glioma” (DIPG) for the first time. They were told that Esther’s tumor would kill her, and she had just approximately 9 months to live.
“Imagine being a parent and hearing these declarations about your child’s life over and over again,” said Jim, Ester’s father. “This is part of what we experienced from doctors and specialists from the beginning. The amount of fear thrown at us starting in that emergency room at Children’s Hospital has been eye opening. Without being grounded in our faith, we’re not sure how we would be able to deal with this.”
The next 48 hours were a whirlwind as Jim and Julie met with various doctors while researching every possible avenue they might take to help their youngest daughter. Within days, Esther was accepted for treatment at St. Jude Children’s Research Hospital in Tennessee. On Mother’s Day, May 8, the family flew to Memphis where Esther had her first appointment the following morning, during which testing began to learn about the mutations of her tumor. On May 24, she began her first of 30 rounds of radiation.
“Regardless of how much she missed her family while undergoing radiation, Esther managed to keep her joy,” said Jim. “We can all make that same decision, too. Esther continues to teach us what life should be like no matter what.”
During a recent Make-A-Wish trip to Disney World, where Esther went on rides, danced, and enjoyed being with her family of 10, the Desrosiers received a call from Children’s National Hospital in Washington, D.C. The hospital is currently conducting preliminary testing for an upcoming clinical trial called Phase ½ DIPG and wondered if Esther might be able to make it to D.C. to see if she might be a good fit for the study. Esther and Julie traveled there the very next day.
“Sometimes things happen and you need to act on them swiftly,” said Jim. “DIPG won’t wait for you. It attacks you and works hard to take the lives of our children. We cannot allow this. We need to help the families now going through this disease and the ones to come, and we owe it to the ones that went before to help fight for where we are today.”
At the end of August, Esther was welcomed into the ultrasound focused trial and will start treatment in early September. SDT-201 has worked well with Glioblastoma patients, however, Esther will be the first DIPG patient to ever be conducted into the trial.
“We know it’s not about being first or second or any other number. It’s about being last,” said Jim. “The last child to have to go through this diagnosis. The last family to be faced with loss of sleep, motivation, sadness, and feelings of helplessness as they watch their child suffer. We are praying for Esther to be used in the trial and to be used to help others going through this battle. ‘The last’ needs to happen now.”