Your gift will be used to find treatments for kids with cancer and help in the effort to end pediatric cancer in honor of Austin.
At just 10 months old, Austin was diagnosed with a craniopharyngioma brain tumor. Austin was a fussy, restless baby whose head kept growing larger and larger. An ultrasound showed an enlarged third ventricle, so Austin’s parents were referred to a neurologist. Before that appointment could happen, Austin’s eyes rolled into the back of his head and he started vomiting. He was rushed to the emergency room and an MRI showed a brain tumor.
Through 3 brain surgeries and 30 rounds of proton radiation, Austin’s determination never wavered. Then, a ray of hope appeared in the form of Dr. Hankinson at Children’s Hospital Colorado, offering a clinical trial specifically tailored for craniopharyngioma patients. Since then, Austin’s tumor has been brought under control, illuminating a path forward for other kids with craniopharyngioma.
This research gives us so much hope that Austin can continue to keep his eyesight, that he doesn’t have to have any more surgery or radiation, and keep his tumor controlled!
Austin’s journey is a testament to the incredible impact of research and innovative treatments. Now, more than ever, our family is committed to supporting the fight against pediatric cancer.
We are partnering with The Morgan Adams Foundation, an incredible organization that funds critical pediatric cancer research. We invite you to join us in supporting their vital work, a beacon of hope to families like ours, and celebrating Austin’s beautiful life by contributing to a brighter future for kids with cancer!
Craniopharyngioma is a rare type of pediatric brain tumor that typically affects kids under the age of 14. It is slow-growing and most often occurs at the base of the brain behind the eyes near the pituitary gland.
Because of its location within the brain, kids with craniopharyngioma often experience a wide range of devastating symptoms, including vision loss, cognitive impairment, obesity, delayed puberty, abnormally slow growth, anxiety, and much more. The standard treatment for craniopharyngioma is surgical resection to remove as much of the tumor as possible, with or without radiation therapy. Craniopharyngioma patients have some of the poorest quality of life among kids with brain tumors.
Dr. Todd Hankinson is a pediatric neurosurgeon and researcher who has spent the last decade-plus advancing treatment and care of kids and teens with craniopharyngioma. The Morgan Adams Foundation has been funding Dr. Hankinson’s craniopharyngioma research since 2013. In particular, Dr. Hankinson has been searching for more therapies that can be offered to craniopharyngioma patients outside of surgery and radiation to improve their survival and quality of life.
Dr. Hankinson and his team’s research led to a new clinical trial of a combination treatment for kids with craniopharyngioma that opened in 2021. The treatment combines a drug called tocilizumab with a MEK inhibitor. In May 2022, Austin became the first child at the University of Iowa Stead Family Children’s Hospital to start Dr. Hankinson’s tocilizumab clinical trial for craniopharyngioma patients. He has received more than 70 infusions of the treatment and since then, Austin’s tumor has been under control. Austin is so happy to be back to enjoying soccer, walking laps, cheering on the University of Iowa Hawkeyes, rooting for Cooper DeJean, and playing with his siblings Tyler, Caden, and Ava!