After noticing some changes in Emma’s balance and mobility, we went to the doctor where things quickly took an unexpected turn. Emma was diagnosed with a brain tumor on 9/5/24. On this day, we were told Emma’s imaging looked very suspicious for DIPG. We were told to expect to lose our precious girl within 6-9 months. We were referred that day to Duke to determine if there were clinical trials that may benefit Emma. We traveled the next day and scheduled her biopsy. In mid September her biopsy came back positive for a JPA. On 9/26, we had a consult where we were told chemo was our best option since Emma’s tumor was deemed inoperable by two hospital systems. The hurricane hit WNC on 9/27 and with that Emma went downhill. She lost consciousness after vomiting and complaining of a very bad headache. Our road flooded and Emma and I had to be rescued by swift water rescue teams. It took 5 attempts, but we finally made it from our home and made it to the local hospital via ambulance. The hospital did not have power or water so we were airlifted to Levine Children’s in Charlotte the following day. We feel this was divine intervention. We met Dr. Wait and he reviewed Emma’s images and performed her first surgery, an ETV. Within a week of the hurricane, Emma’s tumor erupted. Without any other option, Dr. Wait took Emma to surgery. He was able to debunk some of her tumor and our baby survived. Emma had a total of 5 surgeries from September-Nov 2024. We spent 56 days at the hospital where Emma relearned to walk and her speech returned. Emma had scans in March and the neurosurgeon was so pleased! We will return next year for follow up scans. We hope that perhaps her shunt can be removed within the next year or so as well. 

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