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Alexandra’s Story

By Jennie, a Children's National Hospital parent
150 Years Stronger Patient Story Alexandra bunnies and mom

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 had surgery to remove the tumor. Oncologist, Dr. Lindsay Kilburn and neurologist Dr. Roger Packer offered us a novel six-chemo cycle that would delay radiation, which could devastate her small body. But radiation followed halfway through her chemo treatments. Radiation followed. Still, the tumor grew. 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.