Brain Tumor Awareness | Sebastian’s Story

Katie shares her son Sebastian's journey with a brain tumor, Diffuse Midline Glioma (DMG) starting with his initial symptoms and the diagnosis process. She discusses the emotional impact of the diagnosis and the challenges of finding appropriate clinical trials. Katie expresses frustration with the limited options available for children with tumors in the thalamus and the difficulty of making decisions quickly. She plans to seek second and third opinions to explore other treatment options. In this part of the conversation, Katie and Coral discuss the importance of seeking second opinions and the challenges of navigating the medical system. They also touch on the lack of funding and awareness for pediatric brain cancer. Katie shares her experiences with unexplained phenomena and the importance of holding onto hope. They discuss how much Sebastian, Katie's son, knows about his diagnosis and the decisions Katie has made regarding his treatment and support. In this final part of the conversation, Katie and Coral discuss the importance of trust and communication with medical professionals, the need to ask questions and seek multiple opinions, and the significance of emotional support and self-care for parents. They also highlight the importance of advocating for pediatric cancer research and spreading awareness. Katie shares insights into Sebastian's personality and interests, emphasizing the importance of finding joy and creating special moments amidst the challenges. The conversation concludes with advice for parents facing a brain tumor diagnosis and the importance of maintaining a united front in co-parenting situations.

[@meganemerson7919]

Thank you both for sharing your stories.

[@kendramaple912]

I admire how brave you both are for sharing your stories and spreading awareness about this type of cancer. Shedding the tears and really feeling the struggle. I learned so much and am hopeful for more awareness, funding, support, and options for families faced with children diagnosed with DMG, DIPG.