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I do not have a brain tumor, but I still have a CNS tumor. I am living with a thoracic (T11-T12) midline glioma harboring the h3k27m mutation. My first presentation of the disease was in April 2022, developing weakness in my right foot, leading to drop foot.
I noticed I could not stand and bear weight on that right side while putting my socks and shoes on one day. I assumed it was from tight ski boots I wore and I brushed it off. In June of that year, I twisted my ankle and it was very swollen, so I saw a podiatrist. That doctor informed me that my reflexes weren’t full on the right and recommended I see a neurologist. I immediately called around and couldn’t get an appointment until August 2022. The neurologist took lumbar and thoracic MRIs and identified a lesion, and I was referred to neurosurgery. The neurosurgeon told me he couldn’t exactly identify if it was extramedullary or intramedullary but surgery was necessary either way, it’s most likely benign, and I’d be out of the hospital in 2 days. Well, it turned out that I woke up in neuro icu to hear that he couldn’t get it all, because it’s intradural intramedullary and wrapped in nerves and if he took it out I’d be paralyzed. He was able to get 10% for biopsy. I was in the hospital + rehab for 4 weeks. Biopsy came back in January 2023 showing a low grade glioma with the h3k27m mutation, making it high grade. I froze my eggs, then from Feb – April I received low dose chemotherapy temozolomide and radiation for 6 weeks. The pain was so severe I was put on a steroid and could not taper off until August 2023. After completion, I started a higher dose of temozolomide from May 2023 – April 2024, 1 whole year. My every 8 week scans were stable until August 2024 which then showed tiny spots in the thoracic and lumbar region suspecting leptomeningeal disease. I was to get a lumbar puncture STAT, and additional MRIs of the entire brain + spine, and then start proton therapy. The LP showed the mutation present. I received 10 sessions of proton therapy treating the entire spine + brain (even though the brain & cervical spine were clear.) I lost all of my hair by the end, and I had to take a steroid again because of the severe pain. I started the ONC201 trial in October after a radiation washout period. The steroid caused muscle atrophy & myopathy in my right leg and I lost the ability to walk. I was able to taper off the steroid and with the help of Avastin and physical therapy, regain strength in a month’s time and walk with a rolling walker then cane. I have been on ONC201 since, with stable scans, a decrease scan and increase scan. My next steps are getting an MRI in 4 weeks from last and see where I am at and if I’m still eligible for this trial.
My life changed drastically. I was shocked to hear of the initial MRI results because I did not feel any pain or any other symptoms other than the drop foot. When I was officially diagnosed, I was 32 years old. I have been with my spouse for 13 years, and we dreamt of starting a family one day. Our dreams were now shattered. I was diagnosed with an incurable terminal cancer, and I cannot carry my own child. I also cannot take long walks with our dog, hike or bike like I used to enjoy.
I found support groups for individuals diagnosed with the same tumor type + mutation, despite it being very rare. It made me feel not alone, even though I wish no one else was diagnosed with this. I also joined a group for the same clinical trial I am on. Both groups have provided so much insight, education and comfort.
Going gray in May means so much to me. It means we need awareness for these rare, incurable, aggressive tumor types. It means more funding is necessary for research, in hopes that CNS malignancies are not overlooked. It means remembering those who are no longer earth side with us. It means supporting the ones stable, still fighting & thriving. It means that I’m still here and fighting and will always continue to.
I wish people knew you can get second opinions and you can seek alternative treatments to complement your standard of care. I also wish people knew upfront that yes, it is going to be hard, but with support from loved ones and community, you will get through treatment.
Thank you so much for taking the time to read my story. I pray no one has to ever go through what I’ve been through, no matter the age. I pray hard for the day we find out what causes this mutation and the cure for it. I believe in research and science and I know we will figure it out, but more needs to be done because there are more cases popping up all over the world more frequently.
