Donate to Sienna’s Fight against DMG cancer, organized by Sharon Bostwick

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Help Support Sienna’s Battle against DIPG Brain Cancer At the end of November 2024, Sienna was diagnosed with a Diffuse Midline Glioma (DMG). A DMG is a fast-growing malignant brain tumor. WHO (World Health Organization) Grade 4: most aggressive and serious type of tumor that forms along the central nervous system. The mutation that Sienna has (H3 K27M), mainly affects children and young adults. It is rare, inoperable and treatment is very limited. She has gone through 6 weeks of standard radiotherapy and is currently in a clinical action trial for ONC201. ONC201 now known as Modeyso has recently been granted a fast-track US FDA approval. ONC201 has shown promise to extend the young person’s life a few more years beyond the initial diagnosis. The drug does not offer a guarantee for survival, but it is our sliver of hope for more time. There are many unknowns with the drug availability and affordability: -Will we have access to the drug other than continuing with the clinical trial and continuing the chance that she has only received a placebo? -Will we have to go outside of the U.S. to obtain the drug? -Will insurance cover the cost? We fear the cost will be exorbitant; new drugs tend to be in the tens of thousands dollar range when they come to market. -Will we be able to afford it if not covered or just partially covered? While we wait for more information, we are looking at other clinical trials. Whatever route we go, there will be many expenses both medical and travel. We appreciate any donation you are able to make and thank you for your prayers, strength and support. Our family and friends and community have provided so much love, support and prayers and we are very thankful. Sienna is a marvelous and brilliant young woman. She started reading at 4 years old and has been an avid reader ever since. The reading led to her becoming a phenomenal writer. She wrote a short story “My Friend” in the second grade after a lesson on giving life to inanimate objects in written word. Next, she upped the level at which she could amaze us, with her first recital solo singing “God Help the Outcast”. She is truly a kind and generous person, whom so many have come to know, love and trust immensely. She was accepted to the Cleveland Institute of Art with a major in Medical Science Illustration. (Of course, she found a major to mix science and art.) We are focused on Sienna living her best life, surrounded by friends and family and continuing her education. She continues to move forward and not feel sorry for herself. She is determined she will win this fight and does not want anyone to feel sorry for her and treat her differently. She is still a beautiful, kind and fierce fighter for her friends and family. We want to focus on joyous and positive moments and making the best memories. Below are some of Sienna’s early achievements and a few photos from the early years to now. I hope you enjoy them as much as we do. Singing 2019 God Help the Outcast https://youtube.com/shorts/-4tDUnUy9z8?feature=share 2022 Think of Me https://youtube.com/shorts/XI2gh_InjpU?feature=share Pictures/Art

Donate to Sienna's Fight against DMG cancer, organized by Sharon Bostwick

Donate to Sienna's Fight against DMG cancer, organized by Sharon Bostwick

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