Beyond the Tumor: Fighting DIPG as an Adult

In June 2020, Maria Kuenster was diagnosed with Diffuse Intrinsic Pontine Glioma at the age of 22. She had recently graduated from the University of Minnesota with a Bachelors of Science in Health Science and was looking forward to a job opportunity in Chicago. Unfortunately, her life was turned upside down when she went in for a routine MRI and received her life-changing diagnosis. 

Maria is from St. Paul, Minnesota, and is the middle child of three girls. In her free time she enjoys spending time with family and friends, watching movies, journaling, and exploring new places. She also adores her two dogs, Jordy and Liza. In the future, she hopes to use her degree in the field of medical technology.

Maria began to experience headaches in 2017 and went in for an MRI, but all the test results came back negative. Since then, she has gone in for multiple routine MRI’s to see if anything changed. Last year she had a few instances of minor twitches under her eye and when she went in for her MRI in June, the doctor noticed the tumor. When Maria was given the news, she was both shocked and angry. She had plans to start her adult life with a job in Chicago, but instead had to decline the offer and move back home to be with family and receive treatment.

DIPG is known as a form of  pediatric brain cancer and is extremely rare in adults. It most commonly occurs between five and seven years of age. When asked about the challenges she has faced due to her age, Maria said “I spent the month of July looking for clinical trials. Many of them I was deemed ineligible for due to my age – the limit is often 18 years old. I felt like I was fighting to save my own life.”

In July of 2020, Maria started photon radiation. She also created a fundraising campaign to keep herself occupied with something she enjoyed. With the help of a friend, Maria designed some merchandise and titled her campaign “Maria’s Miracle”. This is because she wants to find a miracle for herself and all those with DIPG. Merchandise was available for purchase for one month and she raised over $24,000. This money went to four different organizations that help people with DIPG: Build a Cure, Humour to Fight the Tumor, the University of Minnesota Cancer Center, and Seattle Children’s Hospital.

Maria has recently moved to Seattle, Washington to take part in Seattle Children’s CAR-T Cell Therapy trial. This is when the patient’s own T cells are reprogrammed to recognize and target the protein B7-H3, a molecule that is found in DIPG tumors. The cells are then re-infused into the patient. She will be there for two months and then will return home to Minnesota where she will undergo standard chemotherapy treatment.

The reality of her situation has become more clear now that she is in Seattle receiving treatment on the CAR-T Cell Therapy trial. When Maria inquired about previous patients, she was informed that she is only the fourth patient to undergo this treatment at Seattle Children’s, so there is minimal data available to back up the trial. When asked about how she is coping with it all, Maria responded, “some days are better than others, all I can do is place my trust in my medical team here.”

At the end of our interview, Maria spoke about the lack of awareness of DIPG and resources available for those suffering with this illness – especially for adult patients. She hopes to spread more awareness of DIPG and connect with others who are going through it as well. Maria is thankful for everyone who has supported her throughout her journey thus far and is looking forward to sharing her story in the hopes of educating and bringing more light on DIPG.

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