Born: September 2008
Diagnosed: August 2022
Died: October 2023
Gretchen was born in September 2008 in northern New Jersey to her parents, Jenny and Francis, and grew up with her beloved older brother Alex.
Before her diagnosis, Gretchen was a typical, fun-loving teen-aged girl. Every day, she enjoyed going to school and spending time with family and friends. She liked reading (especially dystopian novels) and staying active (field hockey and track- yes; soccer and basketball- not her favorites!). She also loved skiing, whether nearby in the Poconos and Vermont or out West, with Mom and Alex (but not with Dad, whose skiing became too slow for her). Gretchen liked traveling, and Mom especially treasures a mother-daughter trip that they took to Spain with some of Mom’s friends, in spring 2022, shortly before the brain cancer diagnosis. Home was always filled with the sight of her smiles, the sound of her laughter, and her sarcastic wit and spot-on imitations.
One Friday afternoon, shortly before the start of 9th grade, Gretchen asked to skip pre-season field hockey practice because she felt “dizzy”. On further questioning, Gretchen admitted to feeling unsteady. Her parents noted that she had unusual horizontal eye movements and couldn’t walk in a straight line. A visit to the pediatrician the next morning led to a plan to have a brain MRI after the weekend, but Gretchen’s symptoms worsened over the next day, with wobbly walking and trembling hands. That Sunday, Gretchen went to a local emergency department, and a brain MRI revealed a brain tumor that appeared to be DIPG.
The next day, Gretchen was admitted to Children’s Hospital of Philadelphia (CHOP), and a brain biopsy that week confirmed DIPG. The first 2 months were filled with medical treatments, hospital readmissions, and emergency department visits, mostly at CHOP. Gretchen briefly enrolled in the CONNECT-1702 trial of an experimental medication, PTC596, while receiving 6 weeks of radiation therapy, but had to withdraw from the trial due to severe side effects. She lost almost all her hair, which was especially upsetting, and shaved off the remainder. After the radiation course, Gretchen was briefly better, as expected, and able to go back to school for a few weeks.
In November 2022, Gretchen then enrolled on a combination therapy trial of ONC201 and paxalisib, 2 promising treatments against DIPG. Gretchen attempted to return to school, but the burden of medication side effects and the DIPG itself (double vision, decreased hearing, bad balance, decreased memory) led her to withdraw from school in 2023. She was still able to visit her cousin Kayden in San Francisco (and also see Yosemite) in February, go to Hawaii (thanks to the Make-A-Wish Foundation) in March, see two Broadway shows (including one of the final shows of Phantom of the Opera) in April, and visit her cousin Ethan in Los Angeles (including a day at Disneyland) in May. Despite worsening brain MRI scans in the summer, Gretchen was able to go with her family on a last vacation in early August, to Italy and then a Mediterranean cruise.
In September 2023, Gretchen briefly tried to return to school. However, her DIPG had worsened and “progressed”, both on the brain MRI scans and symptom-wise. Gretchen decided, on the recommendation of her pediatric neuro-oncologist and with the support of her parents, to decline further aggressive therapies. Instead, she is focusing on her comfort and quality of life and spending time with family, friends, and her 2 cats.
Gretchen and her family are grateful that in the year after her diagnosis, they were still able to enjoy so much time together. They were able to make memories, whether by traveling on vacation or by just being together, at home, as a family. They are also grateful to all the physicians, nurses, and other specialists at CHOP and local hospitals who have helped Gretchen and given her great care, in the face of this terrible cancer. Gretchen and her family also thank their extended family and friends for all their support; the amazing kindness of others is one of the few things that has made the last year somewhat bearable.
Gretchen recently surprised her parents by asking how much money she had in her savings account, and she expressed a wish that most of her savings (which is really just birthday money from grandparents!) be donated to research to help find a cure for DIPG and other pediatric brain cancers. Gretchen and her family hope that with proper funding for research, a cure for DIPG can be found, sometime soon. One day, she hopes, DIPG will become like most other pediatric cancers- treatable and curable—and no longer impact other kids, other families, and other communities.
UPDATE: Gretchen passed away peacefully at home, surrounded by her family, on October 17, 2023. Until the week before she passed, she was still enjoying playing (and sometimes beating) her family at board games (Azul, old school Monopoly) and strange card games her parents had never heard of (President, Rat Slap, Mau). Although she quickly lost her ability to walk and then hear and then easily talk, Gretchen succeeded in saying her final goodbyes to her family members and good friends. Gretchen’s family is proud that a few weeks prior to her passing, Gretchen had asked if she could donate any available organs and tissue, to help others. On the day she passed, Gretchen was able to donate her corneas for potential transplant, through the NJ Sharing Network and Eversight, and her brain tissue for research, through the Children’s Brain Tumor Network and its Gift from a Child Initiative. Gretchen and her family hope that her story, participation in 2 clinical research trials, and tissue donation will contribute, in their own small way, to a cure for DIPG and better health for others.
