Gloria, my beautiful daughter, is a beacon of light and strength. From the moment she was born, she brought immense joy and love into our lives. With her sparkling eyes and infectious smile, she has always had a way of lighting up any room she enters. Gloria's love for arts and crafts, her keen interest in animals, and her endless curiosity about the world around her have always been a testament to her vibrant and spirited nature.

Her journey took an unexpected turn when she was diagnosed with brain cancer. It was a day that changed our lives forever, but Gloria's faith, resilience and courage have been nothing short of inspiring. Despite the countless hospital visits, treatments, and the physical and emotional toll of her illness, Gloria's spirit has remained unbroken. Her faith, bravery, and the comfort she brings to those around her are a testament to her incredible strength.

Diagnosis and Initial Treatment

Gloria's journey began with a series of troubling symptoms. In February 2024, she started experiencing nausea, upset stomach and frequent headaches. Her pediatrician referred us to specialists to schedule an endoscopy, colonoscopy and stool tests. These symptoms were surprising to us because Gloria has never experienced symptoms like these before. Our world turned upside down on March 18, 2024, when Gloria had an absent seizure while I was dropping her off at school. We rushed her to the emergency room at Medical City Children's Dallas. The CT and MRI scans revealed a devastating diagnosis a High Grade Glioma brain tumor on the left side of Gloria's brain, several weeks later, genetic testing from Nationwide Children's Hospital revealed she had a Diffuse Midline Glioma H3K27M, along with other mutations. We were told there are no treatments or protocols in place, except for surgery, proton or conventional radiation.

On March 21, 2024, Dr. Sacco, a neurosurgeon, removed the entire tumor, giving us a glimmer of hope. Per Dr. Sacco, Gloria needed to start proton radiation no later than April 22, 2024, but I faced an unexpected hurdle when the insurance company denied approval.  Gloria's proton radiation costs $75,388. After a stressful delay, Gloria finally began her proton radiation treatments on May 9, 2024. She bravely completed a total of 33 sessions, which concluded on June 14, 2024. Throughout this period, Gloria endured more than just her treatments. She had two trips to the emergency room: once on May 8, 2024, for severe chest pain and pressure, and again on June 30, 2024, for severe headaches and vomiting. Following her second emergency room visit on June 30, 2024, Gloria was sent home on palliative care with a prognosis of just a few weeks. Dr. Sacco and Dr. Ghisoli and the oncology team told us that Gloria’s tumor is growing back and extending in other places in her brain and surgery impossible.

Since March, I have contacted several hospitals, doctors and cancer associations. I contacted St. Jude Children’s Hospital and, in an email, written by Ms. Laboe we found out that she is not accepted at St. Jude because there are no clinical trials available for her. In my research, I found a promising option by Dr. Bowers at Children’s Health in Dallas, which offers a drug called ONC201, but unfortunately, in May 2024, Gloria was not eligible for the trial because she had undergone proton radiation instead of conventional radiation. Determined to find a solution, I spent countless nights researching and found out that Gloria could receive the ONC201 drug through Chimerix with expanded access. However, this required a doctor to submit the request on her behalf, and so far, this was not possible. I joined an online group on Facebook and learned that Dr. Arnhold in Germany could prescribe ONC201 for Gloria. I reached out to Dr. Arnhold and to get an appointment I need a letter stating that Chimerix denied her request for expanded access to ONC201.  After many attempts, I was not able to get a letter from Chimerix to send to Dr. Arnhold, but Dr. Arnhold still gave us an appointment and did prescribe the German version of ONC201 which is called Imipridone201. I traveled to Germany on Sept 2nd and picked up the medication. Gloria's next refill is December 2nd and the cost for this is $21,000. Gloria started Avastin infusions in September, a treatment known to starve tumors in adult patients with Glioblastoma.  Her current treatment as of now, is Avastin infusions, Imipridone201 and Temozolomide.  She is also taking Keppra and Diamox to help treat seizures and brain inflammation.

Gloria’s next MRI is scheduled for November 11th, this day we will find out if her current treatment is working and if the tumor is shrinking. Please keep us in your prayers.