Ashlyn's Brain Cancer Battle

Our dear Ashlyn was recently hospitalized due to debilitating headaches and blurred vision. She immediately underwent two emergency brain surgeries. She has been diagnosed with a very rare tumor known as rosette-forming glioneuronal tumor (RGNT). This type of tumor is slow-growing, yet extremely rare, and usually occurs in the fourth ventricle region. Hers is in the third ventricle. The rarity and the differential diagnosis of this tumor make prognosis somewhat uncertain at this time. However, her medical care team is conducting genetic testing to identify whether her tumor has mutations that could be suppressed by drug therapy. In the mean time she may require a third brain surgery to address continuing obstructive hydrocephalus (build-up of fluid in the cavities deep within the brain) and her pain continues to be managed.

Because of this, she has been unable to work and will not be able to return for the foreseeable future. She is in the process of being put on disability leave, which unfortunately does not provide full pay. As a result, a majority of her medical expenses are not covered, and with the everyday necessities of life, resources moving forward are quite limited.

Ashlyn is receiving care from Dr. David Ashley, the Director of the pre-eminent Preston Robert Tisch Brain Tumor Center, and his remarkably supportive care team. Since this Center is an esteemed clinical research institution, we are hopeful that her diagnosis will qualify her to participate in an available clinical trial if a drug treatment is available to suppress her tumor.Since she is now having to live away from her home in Charlotte, adjusting to this unexpected situation will be challenging both for her and us.

Ashlyn is a remarkably selfless individual and brings such light, love, and humor to all who know her and those she meets. Now is a critical time that we provide her with love and support.  Anything you can donate will be truly appreciated. Everything we can do to help and surround her with love is what is most important so she can focus on navigating this process.

Please spread the word. Thank you from the bottom of our hearts. We will keep you updated on her prognosis.

Again, thank you so much,
Beth, Megan, Kelsey, and dear family and friends.