Gloria's Medical Progress
Monthly Updates
Each month, we provide a heartfelt update on Gloria’s journey, sharing her progress and challenges as she navigates this difficult time. Gloria continues to show remarkable strength and resilience, and her medical updates reflect the ongoing treatments, therapies, and milestones in her recovery. These updates are a testament to her unwavering spirit and the incredible support she receives from the community. Your kindness and generosity continue to make a difference in her life, and we are grateful to keep you informed of her journey toward better health. Thank you for standing by Gloria every step of the way.
March 2024 Medical Update on Gloria
In March 2024, Gloria underwent a series of important medical exams and procedures as part of her ongoing treatment. On March 18, she had a CT scan and MRI of the head and brain, followed by MRIs of the cervical, lumbar, and thoracic spine on March 20. On March 21, Gloria underwent surgery for a total resection of the right parietal lobe. Post-surgery, an MRI of the head and brain was performed on March 22, revealing signs consistent with high-grade glioma, which was confirmed by the surgical pathology report. She also had an oncology consultation on March 24, where she began learning how to walk again.
By March 28, an EEG showed slowing on the operative side but no signs of seizures. Gloria’s symptoms before the surgery included persistent headaches, nausea, vomiting, and an absence seizure that led to her emergency visit. After surgery, she experienced left-sided facial weakness, left arm weakness, left leg independence, hydrocephalus, left foot drop, olfactory auras, blurry vision, and left-sided vision neglect. Despite these challenges, she remained awake, alert, and in good spirits.
Gloria’s current medications include Keppra, Acetaminophen, Ondansetron, Dexamethasone, Miralax, and others as needed. She continues to receive intensive physical, occupational, and speech therapy, with her tumor slide sent for genetic testing. Her spirits remain high, and we are deeply grateful for the continued prayers and support.
April 2024 Medical Update on Gloria
April marked significant progress in Gloria’s journey. On April 8, DNA testing was completed, providing critical insights into her condition. On April 10, she was discharged from the hospital and referred to the Make-A-Wish Foundation, bringing hope and moments of joy to her recovery process. Later in the month, on April 23, detailed genetic and genomic lab reports were received, including somatic germline exome analysis, CNS tumor classification, and solid tumor fusion analysis. These reports confirmed the diagnosis of Diffuse Midline Glioma H3K27M, along with key genetic alterations, including H3K27M, KRAS, TP53, and EGFR, with MGMT unmethylated.
Gloria continues to face symptoms such as left-sided hemiparesis, ataxia, and facial dysmetria, which, though present, are showing gradual improvement. Challenges with olfactory auras, blurry vision, and left-sided vision neglect also persist. Her current medications include Keppra, Acetaminophen, Ondansetron, Dexamethasone, and Miralax.
Plans are underway to explore clinical trials, immunotherapy, chemotherapy, and proton therapy as part of her treatment. While St. Jude currently has no clinical trials available, Gloria continues with intensive physical, occupational, and speech therapy to support her recovery. Her spirits remain high, as do the prayers and unwavering support from her community.
May 2024 Medical Update on Gloria
May brought both challenges and progress in Gloria’s medical journey. On May 6, she began her first proton radiation session, with a total of 33 sessions planned. However, on May 8, Gloria experienced intense chest pain and was taken to the nearest emergency hospital. She was transferred the same day to Medical City Children’s Hospital in Dallas, where an EKG showed normal heart rhythms. Although no clear diagnosis was given, doctors suggested the symptoms could be linked to a growth spurt. Gloria was discharged on May 10 and has since been weaning off Dexamethasone.
Her symptoms, including left-sided hemiparesis, ataxia, and facial dysmetria, continue to show slow improvement. Headaches have occurred sporadically, and while blurry vision and left-sided vision neglect persist, olfactory auras have become less frequent. Despite these hurdles, Gloria remains on her prescribed medications, including Keppra and Ondansetron, and continues her proton therapy sessions.
Unfortunately, during her follow-up with Dr. Bowers, Gloria was found ineligible for the ONC201 trial due to the absence of conventional radiation in her treatment plan. Nevertheless, her spirits remain high, buoyed by the prayers and unwavering support of her community as she bravely pushes forward.
June 2024 Medical Update on Gloria
June was a challenging month for Gloria, marked by significant developments in her treatment and condition. She successfully completed her 33-session proton radiation therapy on June 21, a testament to her strength and resilience. However, on June 30, Gloria was admitted to the ER at Medical City Children’s Dallas due to worsening headaches and persistent nausea. A CT scan and MRI revealed concerning tumor progression, with the mass crossing the midline and extending to the left side of the brain. Following this development, surgery was deemed unviable, and Gloria was transitioned to palliative care with support from the Visiting Nurse Associations.
Her current symptoms include left-sided hemiparesis, ataxia, facial dysmetria, fatigue, blurry vision, and left-sided vision neglect. Medications have been adjusted to include Keppra, Ondansetron, Dexamethasone, Acetazolamide, Famotidine, Olanzapine, and Miralax as needed.
Despite these challenges, efforts are ongoing to explore additional treatment options. Contact has been made with Dr. Arnhold in Germany to pursue ONC201, and work is underway to secure an appointment. Gloria’s spirit remains remarkably high, bolstered by the unwavering prayers and support of her loved ones and community as she navigates this difficult phase with courage.
July 2024 Medical Update on Gloria
July brought both stability and ongoing challenges for Gloria as she continued her journey with remarkable strength. After being discharged from the hospital on July 3 under palliative care, efforts were made to expedite her Make-A-Wish experience due to the progression of her tumor. On July 11, the National Tumor Board reviewed Gloria’s case, but unfortunately, no eligible clinical trials were identified. Throughout the month, Gloria underwent detailed imaging, including MRIs of the head, brain, and spine on July 29, which were sent to Dr. Bowers at Children’s. While no tumor progression was noted, she remains ineligible for the ONC201 trial or expanded access. Conversations with Dr. Ghisol about Avastin infusions are ongoing, and efforts continue to secure ONC201 treatment from Germany.
Gloria’s symptoms, including left-sided hemiparesis, ataxia, and facial dysmetria, remain stable with occasional headaches, migraines, and nausea. These episodes, lasting 10–30 minutes, are managed with Tylenol, and morphine was used once for a severe headache. Vision challenges, including blurry vision and left-side neglect, persist. Her medications include Keppra, Ondansetron, Dexamethasone, Acetazolamide, Famotidine, Olanzapine, and Tylenol as needed.
Despite the hurdles, Gloria’s spirits remain remarkably high, as do the prayers and unwavering support from her community. Her strength and courage inspire all who are walking this journey alongside her.
August 2024 Medical Update on Gloria
August marked an important month of new treatments and hope in Gloria’s journey. On August 14, she received her first Avastin infusion and began Temozolomide, a chemotherapy treatment taken for five days every 21 days. Both treatments, while not specific to her tumor type, have shown promise in Glioblastoma cases, and Gloria handled her first infusion exceptionally well, with no fatigue or adverse effects. The following day, on August 15, Gloria had her first consultation with Dr. Arnhold in Germany, which led to a prescription for ONC201 (known as Imipridone 201 in Germany). This medication will be picked up in early September, adding another hopeful option to her treatment plan.
Her symptoms, including left-sided hemiparesis, ataxia, facial dysmetria, blurry vision, and left-side vision neglect, remain present but stable, with only occasional headaches. Gloria continues on her medication regimen, which now includes Avastin and Temozolomide alongside Keppra, Ondansetron, Dexamethasone, and others as needed.
While clinical trials are still unavailable, Gloria’s care team remains committed to exploring every avenue to support her recovery. Gloria’s spirits remain incredibly high, and her resilience continues to inspire the unwavering prayers and support from her community.
September 2024 Medical Update on Gloria
September was a pivotal month as Gloria began her ONC201 (Imipridone201) treatment. She started taking ONC201 on September 6, alongside her second Avastin infusion and a new therapy, 2DeoxyDGlukose. These treatments, combined with her ongoing Temozolomide regimen, reflect the determined pursuit of innovative options to support her journey. By September 30, Gloria received her third Avastin infusion, showing mixed responses—feeling fatigued and sleepy afterward but still maintaining her appetite and spirits.
Her symptoms remain stable, with very few headaches, minimal improvements in left-side weakness, and persistent blurry vision and left-side neglect. Side effects from ONC201 and Temozolomide include brief fatigue and sleepiness, mainly on the second day after taking these medications. Despite these challenges, Gloria continues her medication regimen, which now includes Keppra, Dexamethasone (weaning), Acetazolamide, Avastin (every 21 days), Temozolomide (5 days every 21 days), ONC201, and 2DeoxyDGlukose.
Gloria’s resilience remains an inspiration, with no clinical trials available yet, but her treatments in Germany offer renewed hope. Her second Avastin infusion was a positive experience, even allowing her to enjoy a movie and pizza at the hospital. Though fatigue accompanied her third infusion, Gloria’s strength and high spirits continue to uplift everyone around her, supported by the steadfast prayers of her community.
October 2024 Medical Update on Gloria
October was a special month for Gloria, marked by both progress in her treatment and moments of joy. On October 21, she received her fourth Avastin infusion, continuing alongside her regimen of Imipridone201, 2DeoxyDGlukose, and Temozolomide. Her symptoms remain stable, with left-side weakness, blurry vision, and left-side neglect persisting but not worsening. Headaches have been infrequent and brief, lasting less than five minutes and effectively managed with a cold cap.
A highlight of the month was celebrating Gloria’s 12th birthday. The Junior Catholic Daughters of America organized a heartfelt surprise party on October 26, ahead of her birthday on October 29. The event brought smiles and lifted Gloria’s spirits even higher, reinforcing the love and support of her community.
Gloria remains on her prescribed medications, including Keppra, Acetazolomide, Temozolomide (5 days every 21 days), and Avastin (every 21 days), with Miralax as needed. Despite ongoing challenges, her strength and positivity shine through, supported by the unwavering prayers and encouragement from her loved ones. This month has been a testament to Gloria’s resilience and the power of community to bring light during tough times.
November 2024 Medical Update on Gloria
November brought incredible progress and optimism in Gloria’s journey. On November 11, an MRI revealed significant tumor shrinkage and no signs of hydrocephalus, marking a major milestone in her healing. Dr. Sacco, reviewing the results on November 15, praised the remarkable improvement but noted uncertainty about the exact cause. Gloria’s current treatment plan—including Avastin, Imipridone201, 2DeoxyDGlukose, and Temozolomide—will continue, while efforts are underway to explore options for accessing ONC201 in the U.S. rather than traveling to Germany. With these positive developments, Gloria was also advised she can stop taking Acetazolomide.
This month also saw the introduction of energy and frequency healing sessions, with Gloria attending her first on November 8. Observations suggest these sessions are contributing positively to her overall healing, and they remain a focus alongside her medication regimen and nutritional support to help regain strength in her left side. Her symptoms remain stable, with left-side weakness, blurry vision, and vision neglect showing slight improvement.
Gloria continues to inspire with her high spirits and resilience. As we celebrate these promising results, the focus remains on her continued recovery, supported by the unwavering prayers and love of her community.