Emily went for a routine eye exam on September 1, 2020. Emily had mentioned that she had been getting frequent headaches more often, and they wouldn’t go away. I had said she had had some dizziness with the headaches. Upon the eye exam, her optic nerves were very inflamed as compared to her last eye exam. Her eye doctor contacted her medical doctor after noticing the abnormality. That same day an MRI revealed a large brain mass and fluid all over her head. Things quickly moved as we were sent to a local neurosurgeon and got the most devastating news a parent could get – your daughter has a brain mass! We had to get to Monroe Carell Jr. Children’s Hospital at Vanderbilt in Nashville, Tennesse, as soon as possible.
On September 4, 2020, Emily had a 10- hour surgery at Monroe Carell Jr. Children’s Hospital at Vanderbilt to remove the brain tumor. After surgery, the doctor talked to us and gave us some good news. The cancerous brain tumor was 100% removed, except for some bad cells left on the brain stem that the surgeon couldn’t get. On September 8, 2020, the pathology report showed that Emily has Medulloblastoma, the most primary brain cancer in children. Emily spent 17 days in the pediatric intensive care unit after her surgery to monitor her closely. She had an external shunt placed because of the hydrocephalus or fluid on her brain. On September 14, 2020, Emily had an MRI to see if the fluid was building up, and the results showed the fluid wasn’t draining as it should. She then had to have a second surgery to avoid a permanent shunt. At this time, the surgeon created an opening for the fluid to drain. So far, this is working correctly. Emily does have some memory issues and balancing issues. She is experiencing some delays, but with extensive speech and physical therapies, this should improve.
Emily has a long road ahead of her. She is currently receiving proton beam radiation at Barnes Jewish hospital in St. Louis, Missouri. She is also receiving six rounds of chemotherapy while there and speech and physical therapies. Her last day in St. Louis is scheduled for November 16, 2020. Beth and Emily come home on the weekends.
In December 2020, Emily will start back at Monroe Carell Jr. Children’s Hospital at Vanderbilt with very harsh chemotherapy until December 2021. After Christmas, Emily will be back in school with hospital homebound teachers. Please keep Emily in your prayers for complete healing.
Written by Beth Dulworth, mother of Emily
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