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Donna's Story

Donna was born on July 20, 2005. She was named after her maternal grandmother, Donna Jean, a kind and easy woman with a sharp wit and love of books who had died five months earlier of a brain tumor. From the beginning, Donna was a joy. She was beautiful and helped ease the sadness of her grandmother’s death.

Donna was an extremely bright and courteous baby. She was patient with her rookie parents and had an easy temperament. She was talking by eleven months, knew her alphabet, colors and numbers by fifteen months, and though shy, was sweet and affectionate with those around her. In her nineteenth month, Donna began to show symptoms that would lead to her diagnosis of an aggressive brain tumor, papillary meningioma. During this time, she became moody, had difficulty walking, and would become suddenly fearful over small things.

Over the next thirty-one months Donna underwent four relapses, four neurosurgeries, chemotherapy, a stem cell transplant, and twelve weeks of proton beam radiation treatment in Bloomington, Indiana. She had metastatic disease in her lungs, liver and lymph nodes, and countless MRIs, CT scans, needle pokes, blood and platelet transfusions, ER visits, and home health and hospice visits. Donna did all of this with grace, humor, joy, courage and pluck. When Donna was unhappy with her medical situation, a needle poke or medicine, she felt and expressed that easily, sometimes loudly, but she had an amazing capacity to move on quickly. She had a lot of life to live in a short period of time.

Her oncologist once said, “She may have a brain tumor, but she is not a sick child.” Donna lived well, surrounded by the love of her parents, family and countless friends and supporters. We often told her before difficult treatments or procedures, “Never forget that you’re amazing.” And she was. While quiet and shy, she was also terrifically smart, playful, curious, and empathic. Donna never thought of herself as sick, except sometimes when she had a cold. Cancer did not define her, it was simply a part of her life. And because of her young age, she was not burdened with fear. As her parents, we talked with her about all the treatments and procedures she underwent, but she understood that she visited with doctors and hospitals, had scans and surgeries, to be well and stay healthy. She made it easy for us to parent her through cancer, and that is really saying something.

Donna was a performer. She liked to dance. Her favorite color was black. She had an incredibly silly side that was hard to imagine if you had just met her, as she tended to be quiet and reserved in new and unfamiliar situations. Sharp as a tack, Donna saw things in a different way. She often shared her point of view, making us feel smarter and wiser just being around her. She had tremendous empathy for a young child. Her greatest wish was to go to school, which she did the last two months of her life. The story about the old lady who swallowed a fly was traumatic for her, as were puppets, big trucks (which was unfortunate, living in a city where traffic is the norm), and dogs, large or small. She could sing Blue Suede Shoes cold and would, if you asked nicely. Donna jumped on beds and danced on the stage of the Auditorium Theater. She taught herself to ride a scooter and ran and jumped without her feet leaving the ground. For as young as she was, Donna had a wise and articulate voice. She loved her brother deeply and with joy. She ate sausage with vigor and remarked, "Cheddarwurst is the cheddarbest!" Painting and rainbows and turtles and books all made her happy. So did baking and making water soup.

Like all children, Donna had her likes and dislikes, her idiosyncrasies, her challenges. Unlike most children, Donna had a website, our caringbridge journal, where friends and family stayed connected with her day-to-day life. Soon, the online community grew to include readers from all over. Folks known and unknown followed the often daily updates that were our lifeline during the crisis of cancer. Many folks prayed for us and left messages of support, cooked for us and even packed and unpacked us when we moved soon after Donna's first relapse. Because of this online community, Donna grew up loved and admired by many who never met her. She and her story and the way she lived her life inspired folks to experience a moment, feel grateful, take a deep breath, and live their lives more meaningfully, knowing that sometimes life is too short.