Alexandra's Story
By Jennie, a Children's National Hospital parent
When my gentle and sweet Alexandra could barely speak at 3 years old, our doctor couldn’t figure out why. Alexandra started stumbling a lot. An emergency room doctor said something was very wrong. After an MRI showed a brain tumor, he told us to go straight to Children’s National Hospital.
We were terrified beyond belief. That same day, she began having trouble breathing. Neurosurgeons saved Alexandra’s life in that moment by drilling a hole in her head to relieve intra cranial pressure. It set the tone for the year ahead.
A few days later, Alexandra underwent surgery to remove the tumor. Lindsay Kilburn, MD, and Robert Packer, MD, offered us a novel six-chemo cycle to delay radiation on her small body. But the tumor grew, and Alexandra regressed. She could not walk or sit up.
Dr. Packer explained that, because more lesions formed on her brain, she would not survive. He made it possible for us to take her home to die. On our last day at the hospital, a neuro-oncologist we didn’t know well, Dr. Eugene Hwang, sat with us and cried. They showed us so much compassion.
Five weeks later, my beautiful Alexandra passed away. She was almost 5. One of our nurses accompanied her body to the autopsy because I was distraught about her being left alone. That nurse, as well as Dr. Kilburn, came to the funeral. This was how much love and the quality of care we experienced at Children’s National. I will never forget it.
Alexandra's Care Team Departments
Care Team
Lindsay B Kilburn, MD
- Director, Clinical Neuro-Oncology
- Director, Neuro-oncology Experimental Therapeutics Program
- Neuro-Oncologist
Lindsay B Kilburn, MD
Locations
Departments
Roger J. Packer, MD
- Director, Gilbert Family Neurofibromatosis Institute
- Director, Brain Tumor Institute
- Neurologist
Roger J. Packer, MD
Locations
Departments
Eugene Ickjin Hwang, MD
- Division Chief, Oncology
- Neuro-Oncologist
- Director, Neuro-Immunotherapeutics Program
Eugene Ickjin Hwang, MD
Locations
Departments
Be the Reason a Child Smiles
Every day at Children’s National Hospital, lives are changed through compassionate care and groundbreaking discoveries. Your charitable donation helps us deliver expert treatment and hope to thousands of children and families.
Meet the patients whose stories inspire us—and see the difference your support makes.