Margot’s DIPG Journey

Margot Simmons is a good, kind, funny, smart, adventurous, crafty, and musical 5th grader who is loved by all who know her. In late spring 2022, Margot began complaining that she could not see the blackboard at school. She then started having periodic vomiting episodes, and her parents Tara and Greg took Margot to a pediatric ophthalmologist. When asked to read the eye chart, Margot asked. “Which one?” Concerned about her double vision, the doctor quickly ordered an MRI. On June 3, 2022, at Children’s Hospital in Pittsburgh, Margot was given a diagnosis no parent could ever be prepared to hear: there was a rare, aggressive tumor on Margot’s brainstem called a Diffuse Intrinsic Pontine Glioma (DIPG).

DIPG, cruelly, occurs in children. With only 150-300 cases reported in the United States per year, there is little research and no effective treatment options to stop this tumor’s inevitable progression. Treatment is limited to primarily radiation and symptom management; surgery is not an option because of the tumor’s location on the part of the brain that controls the body’s most vital functions such as breathing, blood pressure, and heart rate. That day of diagnosis, the oncologist laid it out to Margot’s parents starkly: "Children with DIPG do not get to grow up." They were told that the median survival range is 8-11 months from diagnosis.

Margot’s medical journey over the past 10 months has been epic. Steroids and radiation each had their host of side effects. There were highs when the tumor shrunk and seemed stable, and there were lows, including managing the vast feeling of powerlessness one feels when one knows the person you love best in the world is suffering, and that not even the best doctors can fix the problem.

Greg and Tara have been a model of love, grace, and strength as they worked to give Margot as many amazing experiences as possible during this precious, short year, knowing that each and every memory must last a lifetime. They chose to stay positive and try to enjoy every single second. Vacations to Vermont and Harry Potter World, horseback riding, shows, swimming, fishing and kayaking, enjoying their pets (Igor the dog and cats Nickel, Momo and Molly Weasley), playdates with friends, visits with family, and sometimes eating ice cream for dinner. While managing treatments and symptoms, Margot has insisted on continuing to go to school, eager to learn and just be a kid.

Sweet Margot has bravely fought a battle that no child should ever have to fight, and it is reaching its tragic end. Margot’s family has been navigating this journey largely privately, committed to giving Margot a normal 5th-grade year while striving to preserve for her the highest quality of life possible. At this point, Tara and Greg need to step back from work to spend these days surrounding Margot with love and care. A small group of friends is starting this Go Fund Me to help ease the financial burden of taking care of Margot’s medical needs, carrying Margot through to her inevitable passing, and providing a time after her passing when her parents can take a break from the pressure of returning to work to pay the bills.

We humbly ask that you share this link with friends and family and if possible, in giving. Any amount will help. We thank you for your support. Visit Margot’s Caring Bridge site here.