Stories of Inspiration: The Precious Twinkle of a Little Star

“Mommy, my head hurts. I need to wear a hat.” Those words will never be forgotten. Sophia, who was just two-and-a-half years old, complained about morning headaches every morning for a week, but they always seemed to go away quickly. At first we were not overly concerned, but at the end of the week we thought that maybe we should take her in for a check-up at the doctor. The weekend of came and suddenly she vomited one evening not long after whimpering that her head hurt. The next morning, the nausea continued. She lay down on the floor and began to cry, saying her head hurt. When we took her to the after hours center that morning, my husband told the doctor about how Sophia seemed to be unable to walk in a straight line. You never forget when a doctor tells you to go immediately to the ER at the children’s hospital. You never forget when the doctor strongly suggests that you need to make sure your child gets a brain scan that day out of concern that a mass may be growing in her brain. I don’t know how we got to the emergency room in one piece.

I felt sick in the ER as we held Sophia still so they could stick a needle in her arm for an IV for the first time. It ripped our hearts out when it took them a couple of tries. It felt like we were betraying her trust. She frantically tried to figure out why we were letting these scary people hurt her. They gave her something to make her sleep and we watched helplessly as they wheeled her away for her first brain CT scan.  When they returned, the ER doctor told us in a grim, quiet voice that they found something in the scan. She pulled us away to a small room to look at the scans while Sophia was still sleeping. We numbly followed her into the dark room where we were confronted by our worst fears. There on the screen were pictures of our little girl’s brain and inside her brain was a growing mass. The mass explained why Sophia was never able to walk very stable. Now we understood why she was never able to run and jump like other kids her age. It wasn’t due to the fact that she was a thinker and therefore late in her physical skills. The true cause was staring at us from the screen. Tears flowed as we screamed silently inside our hearts.

                          

We became aware of brain tumors on that Sunday morning in May. Doctors diagnosed her with an aggressive brain cancer: anaplastic medulloblastoma. Sophia fought with dignity, grace, and humor over the next 20 months as she endured multiple brain surgeries, high dose chemotherapy, stem cell transplants, and radiation treatments. In the middle of it all, Sophia could always be found singing, dancing, coloring, working in workbooks, and playing. Cancer never killed her joy of living. Our sweet Sophia was only four-years-old when she died in our arms at home. We will always remember her for her gentle, loving spirit.

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About The Brain Tumor Foundation for Children

Founded in 1983, BTFC was the first nonprofit in the U.S. to focus on brain cancer in children. Our mission is to support patients and their families.
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