Cristian Rivera Foundation

Beyond the Tumor: An Update on Maria’s Fight Against DIPG

The Cristian Rivera Foundation first connected with Maria Kuenster, a 23-year-old woman fighting DIPG, in January 2021. Since then, we have followed along on her courageous battle with the disease. Maria flew to Seattle, Washington, to take part in the CAR-T Cell Therapy trial at Seattle Children’s Hospital on January 3, 2021. One of the main reasons she chose this treatment is due to her age. This trial accepts patients up to 26 years old, while many only go up to 18 or 21.

The trial is run by Dr. Nicholas Vitanza and his medical team. They use the patient’s own T cells and reprogram them 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. This treatment lasted for eight weeks and Maria returned to her hometown of St. Paul, Minnesota, on March 4th, 2021. In the interview she said, “one of the biggest struggles of this trial has been being so far away from home and my friends.”

Maria’s stay in Seattle was filled with many walks and time spent outside. Minnesota is extremely cold during the Winter months, so she took advantage of Washington’s milder climate by exploring the beautiful surroundings with her dog, Liza. She has had several visitors during her time in Seattle as well. Both of her sisters visited her and some of her closest friends from college made a weekend trip. Maria also filled her time with her favorite movies and TV shows.

Maria received an infusion every two weeks, with a total of four infusions throughout the trial. She also went to the hospital once a week for neurological check-ups and lab work. Maria has experienced some side effects from her treatment. Following her first two infusions, she spent a night in the hospital due to severe headaches. She has also struggled with nausea over the last few weeks.

During the final week of her treatment, Maria went in for an MRI to monitor the progress of her tumor. Maria was informed several times before that there would be minimal to no progress at this scan. Though her expectations were managed, she still felt a little disheartened at the news that the tumor was stable. Maria said, “I need to remember that a stable tumor is a big deal because of how historically aggressive DIPG is. As long as it remains stable, I have time until something else comes out.” It will take several months before any notable progress is seen. She will have another scan in May or June and remains hopeful that this will show the tumor has shrunk.

Although the CAR-T Cell Therapy clinical trial only calls for four infusions, a person can receive up to 12 infusions. Maria has made the decision to continue with this form of treatment outside of the trial. When asked about her decision, she stated, “Dr. Vitanza believes that this is the most promising option for me right now, considering the only other option is chemotherapy. He is knowledgeable about DIPG and other clinical trials, so I trust his judgement.” Maria plans to fly to Seattle every two weeks to receive the infusion.

Maria is a strong and courageous woman and the Cristian Rivera Foundation continues to cheer her on as she battles this horrible disease. We are dedicated to spreading awareness of DIPG and fighting for a cure and will not stop until a cure is found. You can learn more about Maria’s journey by reading the first article we wrote about her back in January at the link below:

cristianriverafoundation.org/beyond-the-tumor-fighting-dipg-as-an-adult/

By: Clara Jude

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