Meet Anastasia, a sweet 3 year old with aggressive optic nerve glioma.
When Ana was just two years old, she was completely blind. Anastasia’s mom, Graylenee, advocated when doctors wouldn’t listen. Ana was taken to the eye doctor who said that everything looked good and that she would probably snap out of it. Ana’s mom didn’t think this was the case so she took her to a neurologist. He asked if they had a cat in the house. Graylenee said they had just gotten one, and the doctor suspected “cat scratch fever.” The neurologist ordered an MRI but the first available appointment was three months away. A resident with the neurologist looked at the doctor and said, “this is not cat scratch fever, if it gets worse in the slightest way, take her to the ER where they have to do a scan that day.” Determined, Ana’s mom took her straight to the emergency room and told them she was having seizures, even though she was not. She was desperate to find answers and wanted the scan done immediately. The CAT scan revealed that Ana had an aggressive optic nerve glioma. “We were devastated, heartbroken and petrified. All I could think about was, was our daughter going to die?” remembered Graylenee. Ana’s diagnosis was on December 20, 2016.
Treatment was aggressive for Anastasia. A total of 10 different chemotherapies and debio 1347 with shrinkage was administered, but all standard chemotherapies were resisted. Radiation was not an option. Ana has had a craniotomy, shunts placed, biopsies, a Gtube and a mediport placement. Her tumors have been successfully reduced, only to grow back.
In the past few months, Ana was able to go to Disney for her wish trip and she was able to meet Amy Poehler on Christmas in 2019. Ana had major brain surgery in December, and doctors said she wouldn’t live through the week. She proved them wrong, which has happened several times through her treatment. “She smiles through her pain and refuses to give up,” says Graylenee.
Most recently, Anastasia has entered hospice care. Graylenee is still searching for other options, but at this moment there are no more treatments available. “Anastasia has her ups and downs, but every day she always manages to find a reason to smile. We are just praying for a miracle,” said her mom.
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To learn more about brain tumors, please visit: https://www.acco.org/blog/childhood-brain-tumor-cancers-detection-and-diagnosis/
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